I work in the mental health and substance abuse/addiction field. Over the last several years, there has developed a new awareness of labels. Instead of "schizophrenic," we're supposed to say "a person with schizophrenia." Instead of "addict," we're supposed to say "a person with addiction," or "a person with substance abuse/dependence." Instead of calling a person a "borderline," we're supposed to say, "a person with borderline personality disorder."
You get the idea.
The purpose for this is to avoid a label which identifies a person as one thing, and one thing only. To call a person with schizophrenia a "schizophrenic" suggests, according to the argument, that the person is defined by his or her schizophrenia, and that is the sum total of what they are. Of course a person with schizophrenia is multifaceted. Many work, have families, enjoy hobbies, and are active in their churches and communities. The proponents of the label awareness group state that because that is not all a person is, we should not define them by that. They should be thought of as a person with an illness, rather than the illness itself. Another reason is that so many of these mental health and substance use illnesses have stigma attached, it's a way of combating the stigma.
I'm not much for political correctness anyway, but this is another example of the perceptions of some dictating the reality for all.
Let me reframe this: I can say pretty confidently that I am a husband. Does that suggest in any way that this is the sum total of my identity? I am a father. Is that all I am? I don't have to say that I am a person who is married or a person with children, to understand that while these are essential features of what make me who I am, they are not the sum total of my identity. I am Catholic. That's not all I am. That religious label leaves out the idea that I am male, that I am married, that I have children, that I'm a counselor, and that I ride a motorcycle. I don't have a problem saying I'm Catholic, though. It's part of me.
Nathaniel is a hemophiliac. It doesn't matter whether I call him "a hemophiliac" or "a person with hemophilia." What I call him has no power over who he is or over his conditon. Do I want Nathaniel to be defined solely by his illness? Of course not. But calling him a hemophiliac no more defines him than calling him a Catholic. They are both important pieces of his identity, but neither name him as the sum total of who he is.
Some would say that the stigma about being married, having children, being a male or being Catholic is not like the stigma attached to mental health diagnoses. I would argue that anybody that thinks there's not a stigma attached to being Catholic is kidding himself. And if you think I'm not stigmatized when I tell people that I'm a biker in a motorcycle club, well...you are more open minded than most.
Seriously, the real issue is not what we call people. The idea that a name gives to a thing its essential quality is called nominalism. This is a strain of philosophy that states (simplistically put) that we assign a thing its essence by naming it. We all know that what I call a thing has nothing to do with the thing's essence. It's just a word that identifies it. "What's in a name?" quipped Shakespeare's Juliet, "That which we call a rose by any other name would smell as sweet." What we call something has no power either to define or to change a thing's essence. If we perceive schizophrenia or addiction or hemophilia or down's syndrome or Catholic or Baptist or Republican or Democrat as negative, calling it something else is not going to change what we perceive to be the negative qualities of that condition.
The real problem is the attitudes of some towards those with mental health diagnoses, or physical disability, or mental handicap, or differing religious or political views. I do not believe we can change a person's mind by changing the language that we use to talk about it. I've seen it too often: the look that glazes over some people's faces when I talk about addicts. It doesn't matter to these people whether I say "addict" or "a person with addiction." No matter what I call it, the negative response is the same. Whether I say "addict" or "a person with addiction", they hear someone with weak will power who should just be able to quit. It even exists within circles of the same group. For example, I work specifically in methadone assisted treatment with opioid addicts. As soon as I say that, other addicts get a look on their faces like I'm a drug pusher helping an opioid addict stay addicted, just switching the heroin for methadone. Stigma exist. Changing our language is not going to help confront the stigma.
What does help confront and resolve the stigma is honest conversation. We do not have to work at word games. When I experience stigma against my opioid addicts because they are receiving methadone assisted treatment, I meet it squarely. I open up the conversation and give accurate information. So often the reason for stigma against something is because those with stigma are uninformed. Accurate information does more to dissipate stigma than any word games we can play.
How do I keep Nathaniel's hemophilia from being the sole factor of his identity? I put it in perspective. I do not deny that he has hemophilia, and I'm willing to talk to anyone about it who doesn't understand it (giving information about it). I also will not allow him to define himself by it. As he grows, Lesley and I will give him information about it. I like Dirty Harry's idea, "A man's gotta know his limitations." As Nathaniel grows, I will encourage him to define his own boundaries, his own identity. He will, slowly and in age appropriate ways, decide what his hemophilia means to him, and how it will affect his behaviors. My job will be to give him age appropriate information about what hemophilia is and what consequences his behaviors may produce. He will be free age-appropriately to choose what to do and what no to do, and he will be responsible for the consequences.
I'm already fighting the fight against stigma with some family members about hypothetical situations in his life. On what playground equipment should he be allowed to play? Should he be allowed to ride a bicycle? In what sports activities should he participate? They all want to define these according to his hemophilia. I prefer that he should define these according to him.
In the end, we cannot be defined by one thing, no matter how essential that thing is to us. I would not be who I am if I were not Lesley's husband or Jacob, Caitlin and Nathaniel's father. These are essential to my identity. They are interrelated. I would not be Jacob, Caitlin or Nathaniel's father if it weren't for me first being Lesley's husband. Neither of these labels, however, define me exclusively. If anything were to happen, God forbid, to Lesley, I would still be my children's father. The same is true of being Lesley's husbad if we had no children. One label is not the sum total of who I am. Nathaniel's label of hemophilia is not the sum total of who he is. A person's addiction, mental health impairment, handicap, religious or political affiliation is not the sole criteria of the person's being. So suggesting that using label to describe a person necessarily excludes all other possiblities of the person's identity is inauthentic.
In the end, if I don't like a label, maybe what I should be changing is my own attitude toward those with that label. It's a lot easier to change myself than it is to change an entire language. And maybe by changing myself, I might be able to help others change, too.
Friday, September 09, 2011
Thursday, September 01, 2011
Wyman's Place in My Poem
Edited: The parts in italics below I added prior to going through my prepared remarks:
I wrote out what I wanted to say today and showed it to my wife. She told me I was remiss in not mentioning one of her favorite stories about Wyman that I told her. I forget where we were, but Wyman and I were at a public gathering of some kind, and someone that hadn't seen her in years walked up to her and made the remark, "You haven't changed a bit." Wyman was very gracious to her, and when the lady walked away, Wyman turned to me and said, "I hate it when people say that, because it means I looked older than dirt 10 years ago."
I remember the first time I met Dr. Wyman. I was a transfer student in to Lincoln and told her I wanted to study English Literature. She asked me what my favorite poem was. I told her Good Friday Riding Westward 1613 by John Donne. She responded, "Ooh, I'm going to like you."
I can’t tell you how honored I am that I was asked to speak today. I continued to call Dr. Wyman “Dr. Wyman” after I graduated from Lincoln. She and I were eating lunch together one day, and she asked me about that. I told her that it was kind of awkward for me to call her Linda, but I knew that “Dr. Wyman” was too formal. She said, “When you think of me in your head, what do you call me?” I said, “Usually just Wyman.” She said, “Well then, you should call me just Wyman.”
You’ll have to forgive me, that’s still the way I think of her in my head.
Wyman had a love for T.S. Eliot. That’s no secret to any one here. I can’t help but think of an image that T.S. Eliot used when he discussed the great literature of the ages. He used the image of a book shelf, in which a great work of literature takes its place. Of course, when you add a book to a book shelf, all of the other books in the book shelf need to be adjusted. The great works of literature do not stand alone, but stand with every other great work through out history, and affect our experience of all of those great works that came before and will come after.
Another image Eliot uses is a “sentence that is right, (where every word is at home, taking its place to support the others).” A word is just a word, but in the context of a sentence, it creates a commerce with all of the other words that both receives its beauty from them, and contributes beauty to them, until they all become poetry.
That is Wyman. Wyman’s life is a great work of literature among the lives of others.
Wyman is one of the” words” of my life that has contributed to the beauty of my life. I hope in some way I was able to contribute to the poetry of hers.
She dedicated her life to shedding light on the great writers and people that had come before her, and has had an impact on all of those who entered her wake and followed her. I know that she changed my life. She introduced me to Dylan Thomas and Ezra Pound and to her beloved T.S. Eliot. She helped me understand Gerard Manley Hopkins. Funny story about that. We were in the Modern Poetry Class reading Gerard Manley Hopkins. There was a young student in the class who considered himself enlightened. He offered a veiled criticism of Hopkins’s religious themes in his poetry one day by saying, “I love what he does with the language of his poetry. It’s sad that the focus of his writing was so narrow.” To which Wyman responded, “God, man, the universe, that’s pretty narrow.”
It wasn’t just by introducing me to literature that my life was changed. My life was changed by her very presence. She was there for me when a lot of other folks weren’t, or probably more accurately, she found a way in when I wouldn’t let a lot of other folks be there for me. She touched my life more deeply than I have words to express. She was one of those types of friends that we could go long periods without seeing each other, but when we would see each other, it was like we had never been apart. After one of our lunches together, I went home and wrote a poem that I dedicated to her. I hope you will indulge me if I read it to you. It’s called “Being: For LW.”
In the little restaurant
At the intersection of Smith and Grace
The clock on the far wall was broken.
We appreciated each other's company
By choosing to fall
Into a comfortable silence;
To stare out the window
Which allowed the breeze
To threaten our napkins;
To admire how wise the sky
For being blue,
The trees for being green,
The poets for using rhyme
(Or not).
When we did speak, we spoke nothing.
We worked our lunch about our plates,
But that was the extent of it.
The smell of fried chicken still takes me there,
Like incense reminding a monk of prayer.
I wrote that poem after that lunch that day and brought it to her. She said to me, "Wow, that turned into poetry fast." I said, "Wyman, it was poetry all along." She nodded her head and said, "Wasn't it though?"
The restaurant at which we ate that day really was on the corner of Smith Street and Grace Street. That’s one of those” coincidences” that seemed to follow Wyman everywhere she went.
I was asked if I would close with a prayer today. I will, but first I would like to read in a spirit of prayer the 5th segment of Little Gidding, which is Number 4 of T.S. Eliot’s 4 quartets:
“What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal word precise but not pedantic,
The complete consort dancing together)
Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. And any action
Is a step to the block, to the fire, down the sea's throat
Or to an illegible stone: and that is where we start.
We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.
The moment of the rose and the moment of the yew-tree
Are of equal duration. A people without history
Is not redeemed from time, for history is a pattern
Of timeless moments. So, while the light fails
On a winter's afternoon, in a secluded chapel
History is now and England.
With the drawing of this Love and the voice of this Calling
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Through the unknown, unremembered gate
When the last of earth left to discover
Is that which was the beginning;
At the source of the longest river
The voice of the hidden waterfall
And the children in the apple-tree
Not known, because not looked for
But heard, half-heard, in the stillness
Between two waves of the sea.
Quick now, here, now, always—
A condition of complete simplicity
(Costing not less than everything)
And all shall be well and
All manner of thing shall be well
When the tongues of flame are in-folded
Into the crowned knot of fire
And the fire and the rose are one.”
Let us Pray: Eternal rest grant unto her, Oh Lord. And let perpetual shine upon her. May she rest in peace. Amen.
Besides this, the only other prayer I can offer is one of thanksgiving that I was blessed to know her: Thank you, Lord, for the opportunity to get to know this humble, beautiful woman. Thank you, God. Amen.
I wrote out what I wanted to say today and showed it to my wife. She told me I was remiss in not mentioning one of her favorite stories about Wyman that I told her. I forget where we were, but Wyman and I were at a public gathering of some kind, and someone that hadn't seen her in years walked up to her and made the remark, "You haven't changed a bit." Wyman was very gracious to her, and when the lady walked away, Wyman turned to me and said, "I hate it when people say that, because it means I looked older than dirt 10 years ago."
I remember the first time I met Dr. Wyman. I was a transfer student in to Lincoln and told her I wanted to study English Literature. She asked me what my favorite poem was. I told her Good Friday Riding Westward 1613 by John Donne. She responded, "Ooh, I'm going to like you."
I can’t tell you how honored I am that I was asked to speak today. I continued to call Dr. Wyman “Dr. Wyman” after I graduated from Lincoln. She and I were eating lunch together one day, and she asked me about that. I told her that it was kind of awkward for me to call her Linda, but I knew that “Dr. Wyman” was too formal. She said, “When you think of me in your head, what do you call me?” I said, “Usually just Wyman.” She said, “Well then, you should call me just Wyman.”
You’ll have to forgive me, that’s still the way I think of her in my head.
Wyman had a love for T.S. Eliot. That’s no secret to any one here. I can’t help but think of an image that T.S. Eliot used when he discussed the great literature of the ages. He used the image of a book shelf, in which a great work of literature takes its place. Of course, when you add a book to a book shelf, all of the other books in the book shelf need to be adjusted. The great works of literature do not stand alone, but stand with every other great work through out history, and affect our experience of all of those great works that came before and will come after.
Another image Eliot uses is a “sentence that is right, (where every word is at home, taking its place to support the others).” A word is just a word, but in the context of a sentence, it creates a commerce with all of the other words that both receives its beauty from them, and contributes beauty to them, until they all become poetry.
That is Wyman. Wyman’s life is a great work of literature among the lives of others.
Wyman is one of the” words” of my life that has contributed to the beauty of my life. I hope in some way I was able to contribute to the poetry of hers.
She dedicated her life to shedding light on the great writers and people that had come before her, and has had an impact on all of those who entered her wake and followed her. I know that she changed my life. She introduced me to Dylan Thomas and Ezra Pound and to her beloved T.S. Eliot. She helped me understand Gerard Manley Hopkins. Funny story about that. We were in the Modern Poetry Class reading Gerard Manley Hopkins. There was a young student in the class who considered himself enlightened. He offered a veiled criticism of Hopkins’s religious themes in his poetry one day by saying, “I love what he does with the language of his poetry. It’s sad that the focus of his writing was so narrow.” To which Wyman responded, “God, man, the universe, that’s pretty narrow.”
It wasn’t just by introducing me to literature that my life was changed. My life was changed by her very presence. She was there for me when a lot of other folks weren’t, or probably more accurately, she found a way in when I wouldn’t let a lot of other folks be there for me. She touched my life more deeply than I have words to express. She was one of those types of friends that we could go long periods without seeing each other, but when we would see each other, it was like we had never been apart. After one of our lunches together, I went home and wrote a poem that I dedicated to her. I hope you will indulge me if I read it to you. It’s called “Being: For LW.”
In the little restaurant
At the intersection of Smith and Grace
The clock on the far wall was broken.
We appreciated each other's company
By choosing to fall
Into a comfortable silence;
To stare out the window
Which allowed the breeze
To threaten our napkins;
To admire how wise the sky
For being blue,
The trees for being green,
The poets for using rhyme
(Or not).
When we did speak, we spoke nothing.
We worked our lunch about our plates,
But that was the extent of it.
The smell of fried chicken still takes me there,
Like incense reminding a monk of prayer.
I wrote that poem after that lunch that day and brought it to her. She said to me, "Wow, that turned into poetry fast." I said, "Wyman, it was poetry all along." She nodded her head and said, "Wasn't it though?"
The restaurant at which we ate that day really was on the corner of Smith Street and Grace Street. That’s one of those” coincidences” that seemed to follow Wyman everywhere she went.
I was asked if I would close with a prayer today. I will, but first I would like to read in a spirit of prayer the 5th segment of Little Gidding, which is Number 4 of T.S. Eliot’s 4 quartets:
“What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal word precise but not pedantic,
The complete consort dancing together)
Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. And any action
Is a step to the block, to the fire, down the sea's throat
Or to an illegible stone: and that is where we start.
We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.
The moment of the rose and the moment of the yew-tree
Are of equal duration. A people without history
Is not redeemed from time, for history is a pattern
Of timeless moments. So, while the light fails
On a winter's afternoon, in a secluded chapel
History is now and England.
With the drawing of this Love and the voice of this Calling
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Through the unknown, unremembered gate
When the last of earth left to discover
Is that which was the beginning;
At the source of the longest river
The voice of the hidden waterfall
And the children in the apple-tree
Not known, because not looked for
But heard, half-heard, in the stillness
Between two waves of the sea.
Quick now, here, now, always—
A condition of complete simplicity
(Costing not less than everything)
And all shall be well and
All manner of thing shall be well
When the tongues of flame are in-folded
Into the crowned knot of fire
And the fire and the rose are one.”
Let us Pray: Eternal rest grant unto her, Oh Lord. And let perpetual shine upon her. May she rest in peace. Amen.
Besides this, the only other prayer I can offer is one of thanksgiving that I was blessed to know her: Thank you, Lord, for the opportunity to get to know this humble, beautiful woman. Thank you, God. Amen.
Saturday, August 27, 2011
Freedom Isn't Free
I've heard people say, "Freedom isn't free," in reference to the idea that we must make sacrifices in order to maintain our freedom. It's true. Freedom and responsibility are two sides of the same coin. In order to be free, we must be responsible. We must be willing to make sacrifices to meet our responsibilities in order to maintain our freedom. We cannot have freedom without responsibility.
The nurse who will be working with us from the Hemophilia Treatment Center came over the other night and brought a social worker with her. The purpose of the visit was for the social worker to discuss with us the various possibilities for financial assistance in paying for Nathaniel's treatment.
Nathaniel has severe type hemophilia, which means he will be receiving the blood clotting factor infusions 3 times weekly starting at about 9 months of age and lasting the rest of his life. As a baby and through early childhood, the factor infusions will cost about $600 per week. Lesley's insurance will cover the majority of that cost. At this time, and the numbers may be revised in the future, Lesley's insurance will cover nearly all but the copays. I believe at this time, our out of pocket expenses for Nathaniel's infusions will be a little over $100 per week, once he starts receiving the infusions. This cost includes the amount of copays for the prescription and office visits. As he grows into adolescence and adulthood, his treatment costs will increase, because he will need more of the blood clotting factor per infusion (prescription cost goes up). As he reaches adulthood, the cost of his infusions could reach $6,000.00 per week. Again, insurance will cover the majority of that cost, leaving us with copays, which will increase due to the increased prescription cost.
We thought the social worker was going to come with grant or scholarship information.
Nope. Not so much.
He explained to us that Nathaniel's level of severity of hemophilia could qualify him for Social Security Disability, which in turn would qualify him for Medicaid/Medicare. Then he encouraged us to quit our jobs. Well, not really. Not both of us. He told us that if one of us quit work, our income would drop below the limits for social security. We could draw Social Security Income (SSI) on Nathaniel, around $500.00 monthly. Due to our low income level, Jacob and Caitlin would qualify for Medicaid, as well. We would also qualify for EBT card (colloquially known as "food stamps") and also qualify for other government assistance programs.
So basically, his solution to the financial responsibility that Nathaniel's hemophilia imposes on us is to become dependent on the government for income, health insurance, and food.
Lesley and I discussed this...briefly...very briefly.
Allow me to repeat: We can't have freedom without responsibility. They are two sides of the same coin. When we lose one, we necessarily give up the other.
Lesley and I didn't see the option this social worker presented to us as a means of managing the financial responsibility Nathaniel's treatment imposes. We saw his solution as an abdication of that responsibility. If one of us were to quit work so as to qualify for social security income, Medicaid, and EBT, we would lose the freedom of making decisions about Nathaniel's health care (and in turn Jacob's and Caitlin's). We would also lose the freedom to choose the type of housing in which we live, as we would no longer be able to afford our home. We would also lose the freedom of choosing what types of food we would like to eat. EBT only covers certain types of foods, and with reduced income we would not be able to afford our choices. By giving over responsibility to the government, we lose freedom.
I want to be understood here. In no way is this a criticism of those who truly need government assistance. I've worked in the social services field for several years now, and have helped people obtain Social Security Income (SSI), Social Security Disability Income (SSDI), housing assistance, food stamps, and Medicaid/Medicare. I did it willingly and diligently. After my brother's motorcycle accident, I knew he would not be able to work for an extended period of time, and I helped him get SSDI. I was glad when it was awarded, because I knew he truly needed it.
One thing needs to be understood about these programs, though. Those who utilize these government assistance programs lose a certain level of their freedom. For example, I've seen Medicaid turn down my clients for Hepatitis C treatments because they were over a certain age. By relying on government to pay for their healthcare, they lost the freedom to choose which treatments they received. With housing assistance, I worked with a gentleman who was not able to move into a fairly nice house simply because the house had 3 bedrooms rather than 2. The gentleman moved into a 2 bedroom apartment for the same cost as the 3 bedroom house, and housing authority ended up paying the same amount. The man lost his freedom to choose where he wanted to live because he needed the government to help him with the responsibility of paying for his rent. I worked with people who were put on restrictive diets by their doctors for chronic health conditions like diabetes and high blood pressure. They could not, however, afford the food the diets dictated, because they relied on EBT cards and food pantries for their groceries. The costs of the healthy foods the diets dictated far outstretched the meager amount they were awarded on their EBT card, and the food pantries, which do wonderful service, give out mostly processed foods high in sugar, salt, and other preservatives. They lost the freedom to obtain the types of food that would be good for them because they needed assistance with the responsibility of paying for their groceries.
These clients that I worked with legitimately needed help with meeting their needs for healthcare, shelter and food. The government took the responsibility of helping to provide for these needs, but also took from them the freedom to make choices concerning their healthcare, shelter and food.
Freedom and responsibility: if we give up one, we necessarily give up the other.
What the social worker who visited us proposed was not to help us obtain assistance that we needed. What he proposed was that we put ourselves deliberately into a situation where we need assistance. Then we were to hand the responsibility of meeting our needs over to the government. Lesley and I are not willing to sacrifice that freedom, even if it means taking on more responsibility.
The fact is, Lesley and I are blessed. I have no qualms about admitting that we have done well financially with our work. We are by no stretch of the imagination rich. But we're comfortable. We will need to make some lifestyle changes due to the cost of Nathaniel's treatment. I won't be buying that Harley Davidson by the time I turn 40. I will stop going out to lunch as often as I've been in the habit of doing. Lesley just might need to start buying a few more generic items at the grocery store. With her insurance (which is very good), with our incomes, and with a few minor lifestyle changes, the cost of Nathaniel's treatment will be manageable. We have the FREEDOM TO CHOOSE what sacrifices to make to meet our responsibilities. We won't have a third party (like the government) making the choices for us. We will not need to lose the freedoms we have because we aren't able to afford the responsibility.
Should our situation change in the future, we may need government assistance. Right now, we don't. To put ourselves deliberately into a situation where we would need government assistance would be a violation of my conscience, an abdication of freedom, and immoral.
We are going to apply for disability for Nathaniel, but not because we have to. We are going to apply, knowing that we will not qualify for disability income for him. But that's ok. We don't need it. We will apply in the hopes that he will be granted Medicaid, but, again, not because we need it. Medicaid, in this circumstance, will act as a secondary insurance to our primary insurance policy. It will also give us peace of mind. If anything happens to one of us, and we need Medicaid to become his primary insurance, he will already have been approved. There will not be a lapse in his ongoing treatment.
Lesley and I enjoy the freedoms we have. We know they come with a responsibility, but "Freedom isn't free."
The nurse who will be working with us from the Hemophilia Treatment Center came over the other night and brought a social worker with her. The purpose of the visit was for the social worker to discuss with us the various possibilities for financial assistance in paying for Nathaniel's treatment.
Nathaniel has severe type hemophilia, which means he will be receiving the blood clotting factor infusions 3 times weekly starting at about 9 months of age and lasting the rest of his life. As a baby and through early childhood, the factor infusions will cost about $600 per week. Lesley's insurance will cover the majority of that cost. At this time, and the numbers may be revised in the future, Lesley's insurance will cover nearly all but the copays. I believe at this time, our out of pocket expenses for Nathaniel's infusions will be a little over $100 per week, once he starts receiving the infusions. This cost includes the amount of copays for the prescription and office visits. As he grows into adolescence and adulthood, his treatment costs will increase, because he will need more of the blood clotting factor per infusion (prescription cost goes up). As he reaches adulthood, the cost of his infusions could reach $6,000.00 per week. Again, insurance will cover the majority of that cost, leaving us with copays, which will increase due to the increased prescription cost.
We thought the social worker was going to come with grant or scholarship information.
Nope. Not so much.
He explained to us that Nathaniel's level of severity of hemophilia could qualify him for Social Security Disability, which in turn would qualify him for Medicaid/Medicare. Then he encouraged us to quit our jobs. Well, not really. Not both of us. He told us that if one of us quit work, our income would drop below the limits for social security. We could draw Social Security Income (SSI) on Nathaniel, around $500.00 monthly. Due to our low income level, Jacob and Caitlin would qualify for Medicaid, as well. We would also qualify for EBT card (colloquially known as "food stamps") and also qualify for other government assistance programs.
So basically, his solution to the financial responsibility that Nathaniel's hemophilia imposes on us is to become dependent on the government for income, health insurance, and food.
Lesley and I discussed this...briefly...very briefly.
Allow me to repeat: We can't have freedom without responsibility. They are two sides of the same coin. When we lose one, we necessarily give up the other.
Lesley and I didn't see the option this social worker presented to us as a means of managing the financial responsibility Nathaniel's treatment imposes. We saw his solution as an abdication of that responsibility. If one of us were to quit work so as to qualify for social security income, Medicaid, and EBT, we would lose the freedom of making decisions about Nathaniel's health care (and in turn Jacob's and Caitlin's). We would also lose the freedom to choose the type of housing in which we live, as we would no longer be able to afford our home. We would also lose the freedom of choosing what types of food we would like to eat. EBT only covers certain types of foods, and with reduced income we would not be able to afford our choices. By giving over responsibility to the government, we lose freedom.
I want to be understood here. In no way is this a criticism of those who truly need government assistance. I've worked in the social services field for several years now, and have helped people obtain Social Security Income (SSI), Social Security Disability Income (SSDI), housing assistance, food stamps, and Medicaid/Medicare. I did it willingly and diligently. After my brother's motorcycle accident, I knew he would not be able to work for an extended period of time, and I helped him get SSDI. I was glad when it was awarded, because I knew he truly needed it.
One thing needs to be understood about these programs, though. Those who utilize these government assistance programs lose a certain level of their freedom. For example, I've seen Medicaid turn down my clients for Hepatitis C treatments because they were over a certain age. By relying on government to pay for their healthcare, they lost the freedom to choose which treatments they received. With housing assistance, I worked with a gentleman who was not able to move into a fairly nice house simply because the house had 3 bedrooms rather than 2. The gentleman moved into a 2 bedroom apartment for the same cost as the 3 bedroom house, and housing authority ended up paying the same amount. The man lost his freedom to choose where he wanted to live because he needed the government to help him with the responsibility of paying for his rent. I worked with people who were put on restrictive diets by their doctors for chronic health conditions like diabetes and high blood pressure. They could not, however, afford the food the diets dictated, because they relied on EBT cards and food pantries for their groceries. The costs of the healthy foods the diets dictated far outstretched the meager amount they were awarded on their EBT card, and the food pantries, which do wonderful service, give out mostly processed foods high in sugar, salt, and other preservatives. They lost the freedom to obtain the types of food that would be good for them because they needed assistance with the responsibility of paying for their groceries.
These clients that I worked with legitimately needed help with meeting their needs for healthcare, shelter and food. The government took the responsibility of helping to provide for these needs, but also took from them the freedom to make choices concerning their healthcare, shelter and food.
Freedom and responsibility: if we give up one, we necessarily give up the other.
What the social worker who visited us proposed was not to help us obtain assistance that we needed. What he proposed was that we put ourselves deliberately into a situation where we need assistance. Then we were to hand the responsibility of meeting our needs over to the government. Lesley and I are not willing to sacrifice that freedom, even if it means taking on more responsibility.
The fact is, Lesley and I are blessed. I have no qualms about admitting that we have done well financially with our work. We are by no stretch of the imagination rich. But we're comfortable. We will need to make some lifestyle changes due to the cost of Nathaniel's treatment. I won't be buying that Harley Davidson by the time I turn 40. I will stop going out to lunch as often as I've been in the habit of doing. Lesley just might need to start buying a few more generic items at the grocery store. With her insurance (which is very good), with our incomes, and with a few minor lifestyle changes, the cost of Nathaniel's treatment will be manageable. We have the FREEDOM TO CHOOSE what sacrifices to make to meet our responsibilities. We won't have a third party (like the government) making the choices for us. We will not need to lose the freedoms we have because we aren't able to afford the responsibility.
Should our situation change in the future, we may need government assistance. Right now, we don't. To put ourselves deliberately into a situation where we would need government assistance would be a violation of my conscience, an abdication of freedom, and immoral.
We are going to apply for disability for Nathaniel, but not because we have to. We are going to apply, knowing that we will not qualify for disability income for him. But that's ok. We don't need it. We will apply in the hopes that he will be granted Medicaid, but, again, not because we need it. Medicaid, in this circumstance, will act as a secondary insurance to our primary insurance policy. It will also give us peace of mind. If anything happens to one of us, and we need Medicaid to become his primary insurance, he will already have been approved. There will not be a lapse in his ongoing treatment.
Lesley and I enjoy the freedoms we have. We know they come with a responsibility, but "Freedom isn't free."
Thursday, August 25, 2011
NBFFNB
The first Motorcycle Clubs were founded in the late 1940’s by veterans returning from World War II. They were men who had been in combat. They had seen things and done things and experienced things that only other veterans understood. Those listening in from the outside could hear the stories, picture the images, and maybe catch some vague glimpse of emotion from these men. Those listening from the outside, however, could not in the fullest sense share the experience these men had. Only other veterans could do that.
These Motorcycle Clubs were founded by veterans who had tasted the thrill and horror of combat. They had something of a wild side, which was bred into them through their military training and experiences in war. It was hard for them to return to the mundane after what they had gone through. They needed something to fill that void of adrenaline rush that they had tasted in combat. So they rode motorcycles, raced them, got together for parties and weekend runs. They just wanted to be with other men who had shared this common experience of war and wanted to have some fun.
The idea of the “outlaw” motorcycle club was not a tag that was put on these groups by the police. It was put on them by the American Motorcycle Association (AMA). These veteran bikers would participate in and hold races that were not sanctioned by the AMA. Admittedly, they tended to be a little more rowdy in their activities than the AMA preferred, but, hey, they had just fought in war and seen their friends die to preserve our freedom. Who could blame them for wanting to blow off some steam? Their parties consisted of riding motorcycles, racing motorcycles, and alcohol consumption. It was bound to get a little rowdy.
The AMA, who didn’t like the fact that these clubs would organize races outside of their “authority,” quipped that most motorcyclists were good, honest, law-abiding citizens, but it was the one percent of motorcyclists who weren’t that gave the rest a bad name. Thus the “1%ers” were born. The “Outlaws.” Hollywood, beginning with Marlon Brando and “The Wild One,” ran with it. The image of the American Biker as an outlaw, someone outside of main stream, run of the mill, white-picket-fence-and-car-in-the-garage-America was born. And these veteran bikers loved it.
Society saw a ragtag band of bearded, unbathed, and uncouth men with bad manners and worse behavior. For the bikers, "the outlaw" meant freedom, the very thing they had fought and their brothers had died for. They became Robin Hood's fighting the oppressor; the Pirates sailing beyond the horizons; the Crusaders who would fight for freedom and wouldn't be bound by society's narrow limits and laws.
The original clubs were for men who had common experience surviving the horrors of war and earning the freedom just to have a good time. They got together with each other in that bond of brotherhood and had some fun. Nothing more.
That’s what New Breed Motorcycle Club means to me. I’m a prospect with New Breed Motorcycle Club, and I’m proud to be one. These men have invited me to get to know me, and let me get to know them, with the possibility that I can join them wearing the full patch someday. New Breed Motorcycle Club is a Clean and Sober Club, meaning that the members are in recovery from alcohol and drug addiction. That’s why they came together in the first place. Recovery first.
One can understand recovery by thinking of it as a program of self-improvement, but don’t let that analogy diminish what recovery means. For those in recovery, self-improvement is not a hobby, or a book written in pop-psychology that people read, get a couple of good ideas on how to reorganize their cabinets since the last book they read, and then put on a shelf. For those in recovery from addiction, this self-improvement means life or death. If they stop their program of recovery, they will eventually die. In addiction, there is no sitting still and being satisfied. There is only the daily work of moving forward and getting better…or relapse to death. These men are together because they need each other to save each other’s lives. They support one another’s recovery.
This common experience of having survived the loss of nearly everything (including their lives) (and sometimes multiple times), has drawn them together into a brotherhood. Their recovery means putting each other first. The reason they are club is because it gives them some ability to guard who comes into their brotherhood. They will only allow in and tolerate those who will participate in their recovery with them.
The men of New Breed MC have survived their addictions, bonded together to make sure they are all working their recoveries, and they want to have fun. They want to ride motorcycles, go to rallies, participate in activities, and do it clean and sober. They help each other do that. They help each other have clean and sober fun.
And I’m honored that they’ve invited me to be a part of it.
We are the “New Breed” of bikers, but really, our story isn’t that different than the story of those who have gone before us.
NBFFNB
These Motorcycle Clubs were founded by veterans who had tasted the thrill and horror of combat. They had something of a wild side, which was bred into them through their military training and experiences in war. It was hard for them to return to the mundane after what they had gone through. They needed something to fill that void of adrenaline rush that they had tasted in combat. So they rode motorcycles, raced them, got together for parties and weekend runs. They just wanted to be with other men who had shared this common experience of war and wanted to have some fun.
The idea of the “outlaw” motorcycle club was not a tag that was put on these groups by the police. It was put on them by the American Motorcycle Association (AMA). These veteran bikers would participate in and hold races that were not sanctioned by the AMA. Admittedly, they tended to be a little more rowdy in their activities than the AMA preferred, but, hey, they had just fought in war and seen their friends die to preserve our freedom. Who could blame them for wanting to blow off some steam? Their parties consisted of riding motorcycles, racing motorcycles, and alcohol consumption. It was bound to get a little rowdy.
The AMA, who didn’t like the fact that these clubs would organize races outside of their “authority,” quipped that most motorcyclists were good, honest, law-abiding citizens, but it was the one percent of motorcyclists who weren’t that gave the rest a bad name. Thus the “1%ers” were born. The “Outlaws.” Hollywood, beginning with Marlon Brando and “The Wild One,” ran with it. The image of the American Biker as an outlaw, someone outside of main stream, run of the mill, white-picket-fence-and-car-in-the-garage-America was born. And these veteran bikers loved it.
Society saw a ragtag band of bearded, unbathed, and uncouth men with bad manners and worse behavior. For the bikers, "the outlaw" meant freedom, the very thing they had fought and their brothers had died for. They became Robin Hood's fighting the oppressor; the Pirates sailing beyond the horizons; the Crusaders who would fight for freedom and wouldn't be bound by society's narrow limits and laws.
The original clubs were for men who had common experience surviving the horrors of war and earning the freedom just to have a good time. They got together with each other in that bond of brotherhood and had some fun. Nothing more.
That’s what New Breed Motorcycle Club means to me. I’m a prospect with New Breed Motorcycle Club, and I’m proud to be one. These men have invited me to get to know me, and let me get to know them, with the possibility that I can join them wearing the full patch someday. New Breed Motorcycle Club is a Clean and Sober Club, meaning that the members are in recovery from alcohol and drug addiction. That’s why they came together in the first place. Recovery first.
One can understand recovery by thinking of it as a program of self-improvement, but don’t let that analogy diminish what recovery means. For those in recovery, self-improvement is not a hobby, or a book written in pop-psychology that people read, get a couple of good ideas on how to reorganize their cabinets since the last book they read, and then put on a shelf. For those in recovery from addiction, this self-improvement means life or death. If they stop their program of recovery, they will eventually die. In addiction, there is no sitting still and being satisfied. There is only the daily work of moving forward and getting better…or relapse to death. These men are together because they need each other to save each other’s lives. They support one another’s recovery.
This common experience of having survived the loss of nearly everything (including their lives) (and sometimes multiple times), has drawn them together into a brotherhood. Their recovery means putting each other first. The reason they are club is because it gives them some ability to guard who comes into their brotherhood. They will only allow in and tolerate those who will participate in their recovery with them.
The men of New Breed MC have survived their addictions, bonded together to make sure they are all working their recoveries, and they want to have fun. They want to ride motorcycles, go to rallies, participate in activities, and do it clean and sober. They help each other do that. They help each other have clean and sober fun.
And I’m honored that they’ve invited me to be a part of it.
We are the “New Breed” of bikers, but really, our story isn’t that different than the story of those who have gone before us.
NBFFNB
Monday, August 22, 2011
I Forgot How Fun It Can Be
Parenting, that is.
Everyone who keeps up on facebook and the blog here knows the ongoing saga with trying to get sensor probes for the pulsox monitor that both fit Nathaniel and stay put once we get them on. I keep telling the company that it's the sensor probes, not the monitor, that is the problem. They keep telling us that they can bring us a new monitor.
Well, this weekend, on Saturday, we finally ran out of sensor probes. We turned his oxygen level to 1 notch higher than the bare minimum we had been keeping it. We turned the monitor completely off. That was Saturday afternoon. When Sunday morning finally came, we woke up to find an alert, smiling, goofy little boy waving his arms and "ah-goo"ing. He was so happy. I'm not a medical person, but I believe the 10 hours of having the oxygen set and maintained at a steady level without concern of desaturation of blood oxygen content and being messed with and stressed out by having uncomfortable sensor probes sticking to him made a WORLD of difference.
And not just for him.
We all had a really good time with him on Sunday. We had some balloons from a welcome home present that Lesley's cousin gave us. We put the strings in his hands and he bounced those balloons around and laughed. We tried putting a balloon in each hand. Not good. A little over stimulation. But the look of absolute terror on his face when both of those balloons were bouncing overhead was HILARIOUS. We picked him up without worrying about knocking probes loose. He and I danced to the Hemophilia Rock song we made up for him. (We don't have it written down yet, so don't ask for the words or music.)
Jacob and Caitlin weren't getting shooshed away everytime they wanted to stroke his head and give him a hug. At one point, Nathaniel was laying on the couch, and Jacob had climbed up the back of the couch and was precariously perched back there. I told Jacob to be careful not to fall on Nathaniel. "Because he's so sick, Daddy?" Jacob asked.
"No," I replied, "because he's a baby." It was nice telling Jacob that his little brother was a baby, and not a sick baby. Made me feel kind of normal, you know?
Over the last 7 weeks, I've been so worried about Nathaniel, first whether or not he was going to live to see the next day, about whether we were just prolonging his inevitable death, about whether he is ever going to get off this oxygen, about whether the pulsox readings are right or not, that I forgot what I love most about being a dad.
It's just fun.
I went to Mass yesterday morning, and I cried in Church. I was at my wit's end with the whole thing. I prayed from that deep place, you know, "Deep is calling on deep in the roar of waters." (Psalm 42:8) I prayed for Nathaniel's healing. That prayer was answered. He still has hemophilia. He's still on oxygen. The healing I got was what existed between me and Nathaniel.
Yesterday I was able to stop looking at him as this sick little baby, and I looked at him as my son. I had fun with him. We laughed together. We danced together. We played with his balloons together. We teased mommy together. We even ate an ice cream cone together (well, I did most of the eating, ok, all of the eating, but he was there with me).
It was fun being his daddy yesterday. I had forgotten just how fun it can be.
Being a parent is "wonderful," "beautiful," "miraculous," and all of those other fluffy adjectives. It's also just fun.
I remember that now, and I suspect THAT healing is what will help Nathaniel more than anything else.
Everyone who keeps up on facebook and the blog here knows the ongoing saga with trying to get sensor probes for the pulsox monitor that both fit Nathaniel and stay put once we get them on. I keep telling the company that it's the sensor probes, not the monitor, that is the problem. They keep telling us that they can bring us a new monitor.
Well, this weekend, on Saturday, we finally ran out of sensor probes. We turned his oxygen level to 1 notch higher than the bare minimum we had been keeping it. We turned the monitor completely off. That was Saturday afternoon. When Sunday morning finally came, we woke up to find an alert, smiling, goofy little boy waving his arms and "ah-goo"ing. He was so happy. I'm not a medical person, but I believe the 10 hours of having the oxygen set and maintained at a steady level without concern of desaturation of blood oxygen content and being messed with and stressed out by having uncomfortable sensor probes sticking to him made a WORLD of difference.
And not just for him.
We all had a really good time with him on Sunday. We had some balloons from a welcome home present that Lesley's cousin gave us. We put the strings in his hands and he bounced those balloons around and laughed. We tried putting a balloon in each hand. Not good. A little over stimulation. But the look of absolute terror on his face when both of those balloons were bouncing overhead was HILARIOUS. We picked him up without worrying about knocking probes loose. He and I danced to the Hemophilia Rock song we made up for him. (We don't have it written down yet, so don't ask for the words or music.)
Jacob and Caitlin weren't getting shooshed away everytime they wanted to stroke his head and give him a hug. At one point, Nathaniel was laying on the couch, and Jacob had climbed up the back of the couch and was precariously perched back there. I told Jacob to be careful not to fall on Nathaniel. "Because he's so sick, Daddy?" Jacob asked.
"No," I replied, "because he's a baby." It was nice telling Jacob that his little brother was a baby, and not a sick baby. Made me feel kind of normal, you know?
Over the last 7 weeks, I've been so worried about Nathaniel, first whether or not he was going to live to see the next day, about whether we were just prolonging his inevitable death, about whether he is ever going to get off this oxygen, about whether the pulsox readings are right or not, that I forgot what I love most about being a dad.
It's just fun.
I went to Mass yesterday morning, and I cried in Church. I was at my wit's end with the whole thing. I prayed from that deep place, you know, "Deep is calling on deep in the roar of waters." (Psalm 42:8) I prayed for Nathaniel's healing. That prayer was answered. He still has hemophilia. He's still on oxygen. The healing I got was what existed between me and Nathaniel.
Yesterday I was able to stop looking at him as this sick little baby, and I looked at him as my son. I had fun with him. We laughed together. We danced together. We played with his balloons together. We teased mommy together. We even ate an ice cream cone together (well, I did most of the eating, ok, all of the eating, but he was there with me).
It was fun being his daddy yesterday. I had forgotten just how fun it can be.
Being a parent is "wonderful," "beautiful," "miraculous," and all of those other fluffy adjectives. It's also just fun.
I remember that now, and I suspect THAT healing is what will help Nathaniel more than anything else.
Tuesday, August 16, 2011
Missing the Trees for the Forest
We've all heard that old saying, "He missed the forest for the trees." It's supposed to challenge us to keep big picture in mind, rather than getting so focused on the little things that we miss the grand scheme.
It's become painfully clear to me that if I am a "grand scheme person" in my spiritual life, I am spiritually blind. I can't see the trees for the forest. More importantly, if I'm busy looking at the forest, I can't see the path through the trees.
The wisdom literature in the scriptures present different concepts of wisdom. One of those scriptural concepts of wisdom that I have found meaningful and practical in my day-to-day life is that the wise person knows what is the right thing to do and the right time to do it. "For everything, there is a season, and a time for every matter under heaven. He has made everything beautiful in its time; also he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 1, 11)
It's always foolish to do the wrong thing. It is possible, also, to do the right thing at the wrong time. This is equally foolish. The wise person is able to understand that there is:
"a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace." (Ecclesiastes 3:2-8)
The wise person is able to find the right thing to do at the right time.
This frees me in a way that I have never experienced freedom. I don't have to worry about the big picture. My vision needs to be on the here and now. After all, that's all God sees.
God is the eternal now. Let that sink in for a moment. God has no future and no past. "He is who is." That's why God is the same yesterday, today, and forever. The difference between God's vision and mine is that for God every moment in history is happening right now. For me, only this moment is happening right now, but that's ok, because all I need to be concerned about is right now.
This may seem sheets to the wind, and a poor plan for future security, but there are certain things that I would like us to consider, like the lilies of the field.
"Therefore I tell you, do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add one cubit to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow; they neither toil nor spin; yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O men of little faith? Therefore do not be anxious, saying, `What shall we eat?' or `What shall we drink?' or `What shall we wear?' For the Gentiles seek all these things; and your heavenly Father knows that you need them all. But seek first his kingdom and his righteousness, and all these things shall be yours as well. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day." (Matthew 6:25-34)
This sets me free, because I know that all I need to do is what is right for today. I need to seek the kingdom now. By laying the brick in my hand, I make way for the next one to be laid. If all my attention is focused on the next one, however, I'll screw up the one I'm working on now.
I don't have to worry about what is the right thing to do tomorrow. I don't have to worry about what is the right thing to do next year. I don't have to worry about who's going to get elected in 2012. I don't have to worry about if the stock market crashes, and what will happen to my retirement account.
If I am in touch with the Holy Spirit who guides me in my moment to moment decisions, then in 10 years, I will find that I am exactly where I am supposed to be, doing exactly what I am supposed to be doing, with exactly what I need to do it. God, who sees 10 years from now as now, is preparing now for what I cannot see. "...he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 11b)
Here's a great mistake I made in my life. When I was discerning whether or not to become a priest, I had a still, small voice inside of me telling me that I should not get ordained. I spent so much time thinking about the future, and what ministry would be like, and where I would be 10 years, 20 years, 30 years from where I was, that I didn't listen to what that still, small voice was saying to me AT THAT MOMENT. If I had known then what I know now, I would not have asked for ordination. It was not God's will for me. I got so blinded by the forest, that I missed the details of the trees, which have a beauty all their own.
Right now, I am not called to see the forest. That's a vision that I will have someday in heaven. Right now, I'm called to keep my vision squarely on the path that I am walking today.
Practically, this is how it works. What do I do with my money today? I pray about it. That's always first. I ask God what is his will for me to do with my money today. God will guide me to divide it up between tithing, bills, insurance payments, retirement accounts, fun money. He will guide me into the amount given to each. Strangely enough, when I instituted this practice into my financial management, I've always had enough for everything.
I have a dear friend who takes issue with the list of priorities, "God first, something second, something else third." You can fill in the blanks. His issue is, "Why should I go beyond saying, 'God first'?" If God is first, and I am seeking what is his will for me now, God will tell me WHAT should be second and WHEN "fill in the blank" should be second. Because sometimes, "fill in the blank" will be third. "But seek first his kingdom and his righteousness, and all these things shall be yours as well." (Matthew 6: 33)
I have to monitor myself constantly, because I want to know what the future will be for me and for my children. That's not mine to know. When I'm suffering, I want to know what great purpose this suffering may serve. That's not mine to know either. What is mine is to seek God's will for me now, and to believe "He has made everything beautiful in it's time."
I know that if I'm doing God's will now, He will make it all beautiful IN ITS TIME.
It's become painfully clear to me that if I am a "grand scheme person" in my spiritual life, I am spiritually blind. I can't see the trees for the forest. More importantly, if I'm busy looking at the forest, I can't see the path through the trees.
The wisdom literature in the scriptures present different concepts of wisdom. One of those scriptural concepts of wisdom that I have found meaningful and practical in my day-to-day life is that the wise person knows what is the right thing to do and the right time to do it. "For everything, there is a season, and a time for every matter under heaven. He has made everything beautiful in its time; also he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 1, 11)
It's always foolish to do the wrong thing. It is possible, also, to do the right thing at the wrong time. This is equally foolish. The wise person is able to understand that there is:
"a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to rend, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace." (Ecclesiastes 3:2-8)
The wise person is able to find the right thing to do at the right time.
This frees me in a way that I have never experienced freedom. I don't have to worry about the big picture. My vision needs to be on the here and now. After all, that's all God sees.
God is the eternal now. Let that sink in for a moment. God has no future and no past. "He is who is." That's why God is the same yesterday, today, and forever. The difference between God's vision and mine is that for God every moment in history is happening right now. For me, only this moment is happening right now, but that's ok, because all I need to be concerned about is right now.
This may seem sheets to the wind, and a poor plan for future security, but there are certain things that I would like us to consider, like the lilies of the field.
"Therefore I tell you, do not be anxious about your life, what you shall eat or what you shall drink, nor about your body, what you shall put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add one cubit to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow; they neither toil nor spin; yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O men of little faith? Therefore do not be anxious, saying, `What shall we eat?' or `What shall we drink?' or `What shall we wear?' For the Gentiles seek all these things; and your heavenly Father knows that you need them all. But seek first his kingdom and his righteousness, and all these things shall be yours as well. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day." (Matthew 6:25-34)
This sets me free, because I know that all I need to do is what is right for today. I need to seek the kingdom now. By laying the brick in my hand, I make way for the next one to be laid. If all my attention is focused on the next one, however, I'll screw up the one I'm working on now.
I don't have to worry about what is the right thing to do tomorrow. I don't have to worry about what is the right thing to do next year. I don't have to worry about who's going to get elected in 2012. I don't have to worry about if the stock market crashes, and what will happen to my retirement account.
If I am in touch with the Holy Spirit who guides me in my moment to moment decisions, then in 10 years, I will find that I am exactly where I am supposed to be, doing exactly what I am supposed to be doing, with exactly what I need to do it. God, who sees 10 years from now as now, is preparing now for what I cannot see. "...he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end." (Ecclesiastes 3: 11b)
Here's a great mistake I made in my life. When I was discerning whether or not to become a priest, I had a still, small voice inside of me telling me that I should not get ordained. I spent so much time thinking about the future, and what ministry would be like, and where I would be 10 years, 20 years, 30 years from where I was, that I didn't listen to what that still, small voice was saying to me AT THAT MOMENT. If I had known then what I know now, I would not have asked for ordination. It was not God's will for me. I got so blinded by the forest, that I missed the details of the trees, which have a beauty all their own.
Right now, I am not called to see the forest. That's a vision that I will have someday in heaven. Right now, I'm called to keep my vision squarely on the path that I am walking today.
Practically, this is how it works. What do I do with my money today? I pray about it. That's always first. I ask God what is his will for me to do with my money today. God will guide me to divide it up between tithing, bills, insurance payments, retirement accounts, fun money. He will guide me into the amount given to each. Strangely enough, when I instituted this practice into my financial management, I've always had enough for everything.
I have a dear friend who takes issue with the list of priorities, "God first, something second, something else third." You can fill in the blanks. His issue is, "Why should I go beyond saying, 'God first'?" If God is first, and I am seeking what is his will for me now, God will tell me WHAT should be second and WHEN "fill in the blank" should be second. Because sometimes, "fill in the blank" will be third. "But seek first his kingdom and his righteousness, and all these things shall be yours as well." (Matthew 6: 33)
I have to monitor myself constantly, because I want to know what the future will be for me and for my children. That's not mine to know. When I'm suffering, I want to know what great purpose this suffering may serve. That's not mine to know either. What is mine is to seek God's will for me now, and to believe "He has made everything beautiful in it's time."
I know that if I'm doing God's will now, He will make it all beautiful IN ITS TIME.
Wednesday, August 10, 2011
Rolling the Dice with My Son's Life
Those of you who have been following on facebook know that Nathaniel was discharged from the hospital last Friday, August 5. When he was discharged, he was on 50 milliliters (ml) of oxygen support, and doing very well on it. The oxygen support runs in 25 ml increments, so ideally, we should have been able to wean him down to 25 ml, and then remove the oxygen support in a short amount of time, a few days to a week.
We left the hospital around 3:45 pm on Friday, with a portable oxygen tank and a pulsox machine (which is used for reading his blood saturation level known as the "sat" and his pulse rate). Around 6:30 the big oxygen tank delivery dude shows up with the oxygen concentrator for use at home. We hook up the oxygen concentrator, get everything going, and finally connect the sensors to the pulsox to get a read on how his sats are. For Nathaniel, sat numbers above 90 are considered normal. We couldn't get him to sat over 85. We messed with it for about 45 minutes to an hour, and decided to call the on-call numbers.
First we were given the Friday evening on-call run around. If you've ever tried to reach somebody who's supposed to be on-call on a Friday evening, you know exactly what I'm talking about.
Finally, we got a hold of the doctor Dr. Sarah Smitherman (whom we have come to love) who was the chief resident on the pediatric floor at the Women's and Children's Hospital in Columbia that night. She told us that she suspected the problem was with the pulsox machine, and not with Nathaniel, so to come up to the hospital and bring the pulsox with us. We called Lesley's mom and dad to come watch Jacob and Caitlin and headed up to the hospital.
Dr. Smitherman hooked up the hospital pulsox to one foot, and our pulsox to his other foot. There was a 10 point difference in their readings. The hospital pulsox was reading around 94-96. Ours was not reading over 85. Dr. Smitherman got in touch with the home health company who gave us the pulsox. The guy from the home health service showed up and examined the machine. I expressed to him at that time that I honestly didn't believe it was the monitor, but rather the sensors that weren't reading him properly. He said he understood what I was saying, but that he didn't have the expertise to make that distinction. He gave us a new monitor, and several of the same sensors that we had to begin with, and sent us home.
All weekend, we watched Nathaniel's numbers bounce around. He would be 92, 94, then drop to 73, then climb back up to 89, then drop to 84, then climb back up to 92, then drop to...you get the picture. The whole time, all of the indicators that would signal that the machine was getting a bad read were pretty quiet. I kept thinking, "How could his readings be so inconsistent but the machine be picking him up properly?"
On Monday about noon, one of the respiratory therapists (RT) who works for the home health group came out to the house. They tried several different placements of the sensors on Nathaniel, but none of them were giving a consistent reading. The RT tried placing the sensor on herself and on Lesley. Inconsistent readings. She said, "Well, we could try ordering another machine, a completely different type, and see if that helps." Lesley told the RT that she would discuss it with me, and we would get back to her.
On Monday afternoon, we went to our family pediatrician, Dr. Weiss, for a scheduled hospital discharge follow up for Nathaniel. We explained to him that we couldn't get a good consistent reading from the pulsox. He believed us; that's why we love him. He offered to call the home health group himself, but we didn't have the number on us. We told him we would call as soon as we got home.
We left Dr. Weiss's office, picked up Jacob and Caitlin, went home, and Lesley called the home health group again. She expressed to them on the phone that we believed that the sensors were the problem. The guy came out, super nice, very kind, obviously concerned for us and our situation. He brought another of the same kind of monitors. I told him the same thing that Lesley and I had been saying for the past 4 days, "I don't think it's the monitor. The sensors are not picking him up." The guy, very nice, said, "I hear what you're saying, but I don't know how to get better sensors than the ones that came with the machine. I'm kind of just the delivery guy." He offered to leave us with a new monitor.
AAAAAHHHHHH!!!!
He left.
At this point, it was Monday evening, and Nathaniel was starting to look pretty tuckered out. He didn't want to eat. He was pretty lethargic. I tickled him in the ribs, shook him (gently to wake him) and tried getting him roused. He just did not want to wake up. The whole time, his pulsox sat was bouncing between 92 and 81. Remember, below 90 is bad. Lesley called again the on-call number. We spoke to a pulmonologist. The doctor asked lots of questions, and asked us to pinch his fingernail. If you pinch your fingernail, it will turn palish gray, and then turn pink again fairly quickly. If it does not, there's a problem. Nathaniel's didn't seem to turn pink again. She asked if his fingers and toes were cold. Yep. She told us that the lethargy, the fact he wasn't eating his normal amount, the "fingernail" test, and the coldness in his fingers and toes made her think there was a "blood profusion" problem. She asked what his pulsox number was. I responded, "Which one, the one now, or the one 5 seconds ago." I tried to explain to her that the pulsox was giving us inconsistent readings, and we honestly have never had a good sense of what his sat was since we brought him home.
The doctor at this point responded to me, "Well, we may be blaming the machine when actually he is getting sicker." I wanted to reach through the phone and smack her. She hadn't been living with the uncertainty about how our son was responding to his oxygen for 4 days. And she has the nerve to say that to me.
To me, her response bespeaks an incredible level of arrogance. There are some, not all, but some doctors who rely so heavily on their equipment, that they stop trusting the parents and caregivers to know their children.
She advised us to go to the hospital because she believed he was anemic. We packed up Jacob and Caitlin and took them to Mima and Papa's. We made the trip up to Columbia. When we arrived at the hospital, we were ushered to the Pediatric Intensive Care Unit, where they hooked him up to a pulsox monitor. His oxygen supply level was set at 125 ml.
It immediately read 96. We watched it for about 15 minutes. It never went below 92. They turned it down to 100. It dropped for a second to 91, and then started reading consistently 94-95. We dropped him to 75. The pulsox number dropped to 89 for a second, and then went back up and stayed consistently at 92-93. We dropped the oxygen to 50 ml. The pulsox dropped to 88, and then went to 92. We dropped the oxygen to 25 ml, and Nathaniel dropped to 88-89, and kind of camped there. So now we know. 50 ml of oxygen is the real amount that he needs in order to keep his sat level above 90. That means for the past 4 days, we have been giving him more than twice the amount of oxygen that he needs. For the past 4 days, we have been terrified to drop his level of oxygen support because the machine was not reading him correctly. For the past 4 days, we've been telling people that what we are doing right now is not working, not that Nathaniel is getting worse, but that we are afraid to do what we were told to do because we can't tell if he's getting worse.
I want to go back to that on-call doctor that we spoke to last night and rub her freakin' face in it. "Can we blame the machine now?" and probably throw in an expletive or two. Doctors who dismiss their patients experiences because they are trusting a machine get zero respect from me.
One of Lesley's relatives, I think it was her grandmother, was born very premature way back in the early 1900's, before incubators, breathing tubes, pulsox monitors. Her parents kept her alive by putting her in a shoe box on the door of the wood stove. Her parents knew instinctively what to do for that child.
I'd like to think Lesley and I know what to do for ours, but I have to admit I've bought into this self-doubt that the machines will tell us something that we don't know. I know these machines' value. The doctors, using these very same machines, saved my son's life. But I also know when the machine is not giving me information that is consistent with what I see in my son. At what point do I stop trusting the machine and just go with my gut as a parent? Man, that's a gamble. Do I really want to roll the dice when my son's life could be at stake? Do I want to take the gamble in trusting a doctor who puts her faith in a machine that I know isn't working?
Anyway, Dr. Gruner, our hematologist who will be helping us manage Nathaniel's hemophilia, is going to go to bat for us. She told us we will be leaving the hospital today, but not until we get a machine that is giving us accurate information. This is twice that we've had to rush to the hospital, not because Nathaniel's health was in danger, but because the machines that we have been told to rely on as a guide for his improvement aren't working.
The most important thing in the end is that Nathaniel is fine. Blood counts came back normal. No anemia. Chest xrays came back clear. No fluid build up on the lungs. Oxygen level was moved up to 75 ml when he got mad when he pooped, which is ok. It'll get turned back down to 50 ml in a little while when he calms down. Sat levels are staying in 91-95 range. That's his normal for now.
And above all, when I look at him, I can tell he's feeling frisky. I know in my gut that he's ok. That's where I'll place my bets for now.
We left the hospital around 3:45 pm on Friday, with a portable oxygen tank and a pulsox machine (which is used for reading his blood saturation level known as the "sat" and his pulse rate). Around 6:30 the big oxygen tank delivery dude shows up with the oxygen concentrator for use at home. We hook up the oxygen concentrator, get everything going, and finally connect the sensors to the pulsox to get a read on how his sats are. For Nathaniel, sat numbers above 90 are considered normal. We couldn't get him to sat over 85. We messed with it for about 45 minutes to an hour, and decided to call the on-call numbers.
First we were given the Friday evening on-call run around. If you've ever tried to reach somebody who's supposed to be on-call on a Friday evening, you know exactly what I'm talking about.
Finally, we got a hold of the doctor Dr. Sarah Smitherman (whom we have come to love) who was the chief resident on the pediatric floor at the Women's and Children's Hospital in Columbia that night. She told us that she suspected the problem was with the pulsox machine, and not with Nathaniel, so to come up to the hospital and bring the pulsox with us. We called Lesley's mom and dad to come watch Jacob and Caitlin and headed up to the hospital.
Dr. Smitherman hooked up the hospital pulsox to one foot, and our pulsox to his other foot. There was a 10 point difference in their readings. The hospital pulsox was reading around 94-96. Ours was not reading over 85. Dr. Smitherman got in touch with the home health company who gave us the pulsox. The guy from the home health service showed up and examined the machine. I expressed to him at that time that I honestly didn't believe it was the monitor, but rather the sensors that weren't reading him properly. He said he understood what I was saying, but that he didn't have the expertise to make that distinction. He gave us a new monitor, and several of the same sensors that we had to begin with, and sent us home.
All weekend, we watched Nathaniel's numbers bounce around. He would be 92, 94, then drop to 73, then climb back up to 89, then drop to 84, then climb back up to 92, then drop to...you get the picture. The whole time, all of the indicators that would signal that the machine was getting a bad read were pretty quiet. I kept thinking, "How could his readings be so inconsistent but the machine be picking him up properly?"
On Monday about noon, one of the respiratory therapists (RT) who works for the home health group came out to the house. They tried several different placements of the sensors on Nathaniel, but none of them were giving a consistent reading. The RT tried placing the sensor on herself and on Lesley. Inconsistent readings. She said, "Well, we could try ordering another machine, a completely different type, and see if that helps." Lesley told the RT that she would discuss it with me, and we would get back to her.
On Monday afternoon, we went to our family pediatrician, Dr. Weiss, for a scheduled hospital discharge follow up for Nathaniel. We explained to him that we couldn't get a good consistent reading from the pulsox. He believed us; that's why we love him. He offered to call the home health group himself, but we didn't have the number on us. We told him we would call as soon as we got home.
We left Dr. Weiss's office, picked up Jacob and Caitlin, went home, and Lesley called the home health group again. She expressed to them on the phone that we believed that the sensors were the problem. The guy came out, super nice, very kind, obviously concerned for us and our situation. He brought another of the same kind of monitors. I told him the same thing that Lesley and I had been saying for the past 4 days, "I don't think it's the monitor. The sensors are not picking him up." The guy, very nice, said, "I hear what you're saying, but I don't know how to get better sensors than the ones that came with the machine. I'm kind of just the delivery guy." He offered to leave us with a new monitor.
AAAAAHHHHHH!!!!
He left.
At this point, it was Monday evening, and Nathaniel was starting to look pretty tuckered out. He didn't want to eat. He was pretty lethargic. I tickled him in the ribs, shook him (gently to wake him) and tried getting him roused. He just did not want to wake up. The whole time, his pulsox sat was bouncing between 92 and 81. Remember, below 90 is bad. Lesley called again the on-call number. We spoke to a pulmonologist. The doctor asked lots of questions, and asked us to pinch his fingernail. If you pinch your fingernail, it will turn palish gray, and then turn pink again fairly quickly. If it does not, there's a problem. Nathaniel's didn't seem to turn pink again. She asked if his fingers and toes were cold. Yep. She told us that the lethargy, the fact he wasn't eating his normal amount, the "fingernail" test, and the coldness in his fingers and toes made her think there was a "blood profusion" problem. She asked what his pulsox number was. I responded, "Which one, the one now, or the one 5 seconds ago." I tried to explain to her that the pulsox was giving us inconsistent readings, and we honestly have never had a good sense of what his sat was since we brought him home.
The doctor at this point responded to me, "Well, we may be blaming the machine when actually he is getting sicker." I wanted to reach through the phone and smack her. She hadn't been living with the uncertainty about how our son was responding to his oxygen for 4 days. And she has the nerve to say that to me.
To me, her response bespeaks an incredible level of arrogance. There are some, not all, but some doctors who rely so heavily on their equipment, that they stop trusting the parents and caregivers to know their children.
She advised us to go to the hospital because she believed he was anemic. We packed up Jacob and Caitlin and took them to Mima and Papa's. We made the trip up to Columbia. When we arrived at the hospital, we were ushered to the Pediatric Intensive Care Unit, where they hooked him up to a pulsox monitor. His oxygen supply level was set at 125 ml.
It immediately read 96. We watched it for about 15 minutes. It never went below 92. They turned it down to 100. It dropped for a second to 91, and then started reading consistently 94-95. We dropped him to 75. The pulsox number dropped to 89 for a second, and then went back up and stayed consistently at 92-93. We dropped the oxygen to 50 ml. The pulsox dropped to 88, and then went to 92. We dropped the oxygen to 25 ml, and Nathaniel dropped to 88-89, and kind of camped there. So now we know. 50 ml of oxygen is the real amount that he needs in order to keep his sat level above 90. That means for the past 4 days, we have been giving him more than twice the amount of oxygen that he needs. For the past 4 days, we have been terrified to drop his level of oxygen support because the machine was not reading him correctly. For the past 4 days, we've been telling people that what we are doing right now is not working, not that Nathaniel is getting worse, but that we are afraid to do what we were told to do because we can't tell if he's getting worse.
I want to go back to that on-call doctor that we spoke to last night and rub her freakin' face in it. "Can we blame the machine now?" and probably throw in an expletive or two. Doctors who dismiss their patients experiences because they are trusting a machine get zero respect from me.
One of Lesley's relatives, I think it was her grandmother, was born very premature way back in the early 1900's, before incubators, breathing tubes, pulsox monitors. Her parents kept her alive by putting her in a shoe box on the door of the wood stove. Her parents knew instinctively what to do for that child.
I'd like to think Lesley and I know what to do for ours, but I have to admit I've bought into this self-doubt that the machines will tell us something that we don't know. I know these machines' value. The doctors, using these very same machines, saved my son's life. But I also know when the machine is not giving me information that is consistent with what I see in my son. At what point do I stop trusting the machine and just go with my gut as a parent? Man, that's a gamble. Do I really want to roll the dice when my son's life could be at stake? Do I want to take the gamble in trusting a doctor who puts her faith in a machine that I know isn't working?
Anyway, Dr. Gruner, our hematologist who will be helping us manage Nathaniel's hemophilia, is going to go to bat for us. She told us we will be leaving the hospital today, but not until we get a machine that is giving us accurate information. This is twice that we've had to rush to the hospital, not because Nathaniel's health was in danger, but because the machines that we have been told to rely on as a guide for his improvement aren't working.
The most important thing in the end is that Nathaniel is fine. Blood counts came back normal. No anemia. Chest xrays came back clear. No fluid build up on the lungs. Oxygen level was moved up to 75 ml when he got mad when he pooped, which is ok. It'll get turned back down to 50 ml in a little while when he calms down. Sat levels are staying in 91-95 range. That's his normal for now.
And above all, when I look at him, I can tell he's feeling frisky. I know in my gut that he's ok. That's where I'll place my bets for now.
Saturday, August 06, 2011
I Am In Recovery
My brother has been CLEAN AND SOBER for over 3 years. I thank God for that. We've grown to a place in our relationship where I don't feel like I have to protect myself from him, emotionally, physically, financially, you name it. I truly thank God that I have my brother back.
He was at the house yesterday and was talking with me and Lesley. I can't remember the question Lesley asked, but my brother's response struck me: "No, I was an addict a long time before I started using drugs."
I've been thinking about that a lot since he said that.
I realized that I was, too, despite the fact that I've never been addicted to drugs or alcohol.
God diddles in our lives. No doubt about that. He puts people and events in our lives that protect us, inspire us, move us, affirm us, and strengthen us along the way. I believe this: God knew that if I had started down the road of drugs and alcohol, there probably would not have been "recovery" for me. I've always been a "balls to the wall or nothing at all" kind of guy. If God had not intervened and protected me, I would not be alive today. I know I'm not strong enough to go through what I see recoverying alcoholics and addicts go through to stay alive.
Addiction is a terminal illness. If left untreated, it will kill the addict. That's the bottom line. A lot of addicts don't get serious about their recovery until they've come to that painful awareness. They have a terminal illness. They will die from it. But treatment leads to recovery, and recovery leads to life.
I believe that God knows my weakness. I believe that he put people, places and events in my life to keep me from going down that road. There were plenty of times when I had opportunity to use, but something interfered.
An example: I spent the entire spring semester of my junior year in college seminary drunk. That was the semester my great-grandfather died, and I felt incredibly betrayed by God. That was the semester where I really confronted my fears that if God existed at all, I thought he was an abusive, manipulative, asshole who enjoyed setting me up for failure to get his kicks. (I have of course come to understand Him very differently since then, but there's no doubt my image of God the Father was formed by my step-father.)
One morning towards the end of that semester, I was nursing a hang over and a cup of coffee, thinking about when I was going to go into town to buy another bottle of cheap scotch for that night. A guy who I knew was connected with AA came over to me.
"Can I talk to you for a second?" He asked.
I grunted.
"You know how to turn a cucumber into a pickle?" He persisted.
"No, I don't know how to turn a cucumber into a pickle." I was trying to let him know I also didn't really care at the moment.
"You soak it in vinegar," he said. "There's a long time where you can pull that cucumber out of that vinegar, and it will still be a cucumber. But once it turns into a pickle, it'll never be a cucumber again. And you don't know when that moment will be."
"Very enlightening," I said.
"You know how to make a guy an alcoholic?" He asked. I didn't really like where this was going. "You soak him in alcohol," he continued. "There's a long time where if a guy stops drinking, he won't be an alcoholic. But at the moment he flips that switch and becomes an alcoholic, there will never be a time for the rest of his life where he will not be an alcoholic again, and you don't know when that moment will be either." I didn't say anything to this. "I hope you think about that," he said as he got up from the table.
I didn't go buy that scotch that night. I didn't drink any alcohol again for probably 2 years. I can say that I've only actually been drunk 2 times since that conversation in 1995.
God put that guy in my life at that time to keep me from going down that road. I praise God that he also put the grace in me to listen to him. God also put dozens, maybe hundreds of people in my life that I may never even know about, who stepped in at various moments to keep me from going down a path from which I would never have RECOVERED.
What makes an alcoholic an alcoholic? It's not just soaking him in alcohol. There's a whole lot of other things that go into the thinking, attitudes and behaviors that alcoholics and addicts have. It's in their core, in their hearts and personalities. I believe I have those wounds, tendencies, weaknesses, "defects of character" in me. I believe God has protected me from drugs and alcohol, although my defects have come out in other ways in my life. I begin to recognize those defects of character more and more as I maneuver my meandering way through life.
So I believe (I hope that those who are in recovery from drugs and alcohol don't get offended by this) that while I have never been addicted to drugs or alcohol, I am in recovery. I am trying to work on those defects of character that have wounded so many people in my past, more people than I can possibly count, honestly. I know that I have left behind me a wake of wounded people. I am in recovery. Even the Alcoholics Anonymous big book (and my brother could tell you the page number) says that most people are sick, and only some express that sickness through addiction to alcohol and/or drugs.
I claim that recovery.
There's a myth out there that a lot of addicts join in as a way to keep them from having to work with "straight" counselors. The myth is that "If my counselor has not been an addict, he/she can't really understand what I'm going through, so there's nothing he/she can teach me." Unfortunately, that's a myth that many counselors have bought into, too.
With this myth in mind, many of my clients ask me if I'm in recovery. I've always wanted to say yes, but wasn't quite able to give that answer without feeling disingenuous. I claim my own recovery, now. Yes, I'm in recovery. Was I addicted to drugs and alcohol? No. Do I have defects of character that make me vulnerable to addiction and lead me to hurt people in my life? Absolutely, I do. And that's why I'm in recovery.
He was at the house yesterday and was talking with me and Lesley. I can't remember the question Lesley asked, but my brother's response struck me: "No, I was an addict a long time before I started using drugs."
I've been thinking about that a lot since he said that.
I realized that I was, too, despite the fact that I've never been addicted to drugs or alcohol.
God diddles in our lives. No doubt about that. He puts people and events in our lives that protect us, inspire us, move us, affirm us, and strengthen us along the way. I believe this: God knew that if I had started down the road of drugs and alcohol, there probably would not have been "recovery" for me. I've always been a "balls to the wall or nothing at all" kind of guy. If God had not intervened and protected me, I would not be alive today. I know I'm not strong enough to go through what I see recoverying alcoholics and addicts go through to stay alive.
Addiction is a terminal illness. If left untreated, it will kill the addict. That's the bottom line. A lot of addicts don't get serious about their recovery until they've come to that painful awareness. They have a terminal illness. They will die from it. But treatment leads to recovery, and recovery leads to life.
I believe that God knows my weakness. I believe that he put people, places and events in my life to keep me from going down that road. There were plenty of times when I had opportunity to use, but something interfered.
An example: I spent the entire spring semester of my junior year in college seminary drunk. That was the semester my great-grandfather died, and I felt incredibly betrayed by God. That was the semester where I really confronted my fears that if God existed at all, I thought he was an abusive, manipulative, asshole who enjoyed setting me up for failure to get his kicks. (I have of course come to understand Him very differently since then, but there's no doubt my image of God the Father was formed by my step-father.)
One morning towards the end of that semester, I was nursing a hang over and a cup of coffee, thinking about when I was going to go into town to buy another bottle of cheap scotch for that night. A guy who I knew was connected with AA came over to me.
"Can I talk to you for a second?" He asked.
I grunted.
"You know how to turn a cucumber into a pickle?" He persisted.
"No, I don't know how to turn a cucumber into a pickle." I was trying to let him know I also didn't really care at the moment.
"You soak it in vinegar," he said. "There's a long time where you can pull that cucumber out of that vinegar, and it will still be a cucumber. But once it turns into a pickle, it'll never be a cucumber again. And you don't know when that moment will be."
"Very enlightening," I said.
"You know how to make a guy an alcoholic?" He asked. I didn't really like where this was going. "You soak him in alcohol," he continued. "There's a long time where if a guy stops drinking, he won't be an alcoholic. But at the moment he flips that switch and becomes an alcoholic, there will never be a time for the rest of his life where he will not be an alcoholic again, and you don't know when that moment will be either." I didn't say anything to this. "I hope you think about that," he said as he got up from the table.
I didn't go buy that scotch that night. I didn't drink any alcohol again for probably 2 years. I can say that I've only actually been drunk 2 times since that conversation in 1995.
God put that guy in my life at that time to keep me from going down that road. I praise God that he also put the grace in me to listen to him. God also put dozens, maybe hundreds of people in my life that I may never even know about, who stepped in at various moments to keep me from going down a path from which I would never have RECOVERED.
What makes an alcoholic an alcoholic? It's not just soaking him in alcohol. There's a whole lot of other things that go into the thinking, attitudes and behaviors that alcoholics and addicts have. It's in their core, in their hearts and personalities. I believe I have those wounds, tendencies, weaknesses, "defects of character" in me. I believe God has protected me from drugs and alcohol, although my defects have come out in other ways in my life. I begin to recognize those defects of character more and more as I maneuver my meandering way through life.
So I believe (I hope that those who are in recovery from drugs and alcohol don't get offended by this) that while I have never been addicted to drugs or alcohol, I am in recovery. I am trying to work on those defects of character that have wounded so many people in my past, more people than I can possibly count, honestly. I know that I have left behind me a wake of wounded people. I am in recovery. Even the Alcoholics Anonymous big book (and my brother could tell you the page number) says that most people are sick, and only some express that sickness through addiction to alcohol and/or drugs.
I claim that recovery.
There's a myth out there that a lot of addicts join in as a way to keep them from having to work with "straight" counselors. The myth is that "If my counselor has not been an addict, he/she can't really understand what I'm going through, so there's nothing he/she can teach me." Unfortunately, that's a myth that many counselors have bought into, too.
With this myth in mind, many of my clients ask me if I'm in recovery. I've always wanted to say yes, but wasn't quite able to give that answer without feeling disingenuous. I claim my own recovery, now. Yes, I'm in recovery. Was I addicted to drugs and alcohol? No. Do I have defects of character that make me vulnerable to addiction and lead me to hurt people in my life? Absolutely, I do. And that's why I'm in recovery.
Tuesday, August 02, 2011
Observations on Infancy
I am amazed that life exists.
I mean, seriously, it's a wonder we survive past infancy.
We've heard, "Well, Nathaniel's bone marrow, because he is a baby, isn't quite fully functional, so he's not making enough of his own blood at this time anyway, and then with the extreme blood loss he suffered..."
We've heard, "Well, Nathaniel's lungs are immature because he is a baby, and then to have an injury to them like he sustained, ..."
We've heard, "Well, Nathaniel's an infant, so the soft tissue around his heart and lungs isn't quite firmed up yet, so we think that..."
Throughout this whole ordeal with Nathaniel, I've lost count of how many times I've heard, "Well, first of all he's a baby so his (fill in the blank) is not fully developed/functional/firm/..."
It's no wonder the infant mortality rate up until recent history was so high. If so many of our bodily functions are not completely up to par when we're born, it's a wonder more babies aren't lost each year. And by "bodily functions," I'm talking about things that are kind of important, like, oh, breathing, heart beating, and, I don't know, making blood.
The ancient Romans would not name their children when they were born. The first born would be called "Number 1," the second born, "Number 2," and so on. They didn't expect their children to live past being toddlers, so they didn't bother naming them until they were pretty sure the child was going to live into adolescence. True story.
So, this past month (Nathaniel is now over 1 month old), I've been reflecting on how fragile human life is from the very beginning. As far as we can tell, his hemophilia was caused by a random gene mutation on the X chromosome. Weird. Something so little can cause such a response in the human body.
Life is fragile. This wonderful, amazing, undeserved gift hangs by a thread. I am filled with wonder and awe that it can even exist at all. Pretty amazing.
I mean, seriously, it's a wonder we survive past infancy.
We've heard, "Well, Nathaniel's bone marrow, because he is a baby, isn't quite fully functional, so he's not making enough of his own blood at this time anyway, and then with the extreme blood loss he suffered..."
We've heard, "Well, Nathaniel's lungs are immature because he is a baby, and then to have an injury to them like he sustained, ..."
We've heard, "Well, Nathaniel's an infant, so the soft tissue around his heart and lungs isn't quite firmed up yet, so we think that..."
Throughout this whole ordeal with Nathaniel, I've lost count of how many times I've heard, "Well, first of all he's a baby so his (fill in the blank) is not fully developed/functional/firm/..."
It's no wonder the infant mortality rate up until recent history was so high. If so many of our bodily functions are not completely up to par when we're born, it's a wonder more babies aren't lost each year. And by "bodily functions," I'm talking about things that are kind of important, like, oh, breathing, heart beating, and, I don't know, making blood.
The ancient Romans would not name their children when they were born. The first born would be called "Number 1," the second born, "Number 2," and so on. They didn't expect their children to live past being toddlers, so they didn't bother naming them until they were pretty sure the child was going to live into adolescence. True story.
So, this past month (Nathaniel is now over 1 month old), I've been reflecting on how fragile human life is from the very beginning. As far as we can tell, his hemophilia was caused by a random gene mutation on the X chromosome. Weird. Something so little can cause such a response in the human body.
Life is fragile. This wonderful, amazing, undeserved gift hangs by a thread. I am filled with wonder and awe that it can even exist at all. Pretty amazing.
Tuesday, July 26, 2011
Observations From a Hospital Room
1. Hospital time is not the same as time everywhere else on earth. 60 seconds do not make a minute, and, "Oh, about 15 minutes," actually could mean any amount of time between 37 seconds to 2 hours, 49 minutes (give or take).
2. I wonder if there is a reason the hospital room toilet seat looks like the silhouette of a cartoonish clown face:
3. There are certain people, not many, but some, who cannot get beyond themselves and their own feelings to offer real support. They turn the whole situation around so that you end up comforting and supporting them through your difficulties. I wish there were a way to tell those people to bug off.
4. It's really, really, really important to remember the power of choice. For example, I wailed in a previous post about how my family has not eaten a meal at home together in 22 days. It begins to feel like we have to be at the hospital with Nathaniel. The fact is, we don't. A nurse told Lesley that she had to inform a married couple that their child had a severe illness, and would be in the ICU for at least 2 weeks. The nurse said that married couple then went on vacation for 2 weeks. They left contact numbers where they could be reached, but were out of state for the majority of their child's hospitalization. The fact is, we're at the hospital so much because we choose to take on that responsibility. I don't think anybody would consider us bad parents if we decided just "to take a night off" so that we could both be home together for a night. Nathaniel is important enough for us to make those sacrifices. Knowing it is my choice actually does make it easier to carry the burden.
5. In the hospital, boredom makes even the worst movies tolerable:
6. It was a really, really good idea to put a Wii in every room.
7. People do one of two things on elevators: 1) completely ignore you, or 2) talk to you as if you've been friends for years. (I'm not sure there is a middle ground between those two extremes.)
8. It's a lot easier to say that you believe God is taking care of you than to really, deep down, believe He is.
9. In those fleeting moments when you experience that deep down belief that God is taking care of you, there is "peace that surpasses understanding."
10. Staying overnight at the hospital with a loved one who is sick allows one to take a vacation from the reality of one's own powerlessness over the situation.
11. Hospital food really isn't that bad.
12. Sick people have touched the elevator buttons, too.
That's it for now. I may have more observations later. It looks like we may still be here for a while.
2. I wonder if there is a reason the hospital room toilet seat looks like the silhouette of a cartoonish clown face:
3. There are certain people, not many, but some, who cannot get beyond themselves and their own feelings to offer real support. They turn the whole situation around so that you end up comforting and supporting them through your difficulties. I wish there were a way to tell those people to bug off.
4. It's really, really, really important to remember the power of choice. For example, I wailed in a previous post about how my family has not eaten a meal at home together in 22 days. It begins to feel like we have to be at the hospital with Nathaniel. The fact is, we don't. A nurse told Lesley that she had to inform a married couple that their child had a severe illness, and would be in the ICU for at least 2 weeks. The nurse said that married couple then went on vacation for 2 weeks. They left contact numbers where they could be reached, but were out of state for the majority of their child's hospitalization. The fact is, we're at the hospital so much because we choose to take on that responsibility. I don't think anybody would consider us bad parents if we decided just "to take a night off" so that we could both be home together for a night. Nathaniel is important enough for us to make those sacrifices. Knowing it is my choice actually does make it easier to carry the burden.
5. In the hospital, boredom makes even the worst movies tolerable:
6. It was a really, really good idea to put a Wii in every room.
7. People do one of two things on elevators: 1) completely ignore you, or 2) talk to you as if you've been friends for years. (I'm not sure there is a middle ground between those two extremes.)
8. It's a lot easier to say that you believe God is taking care of you than to really, deep down, believe He is.
9. In those fleeting moments when you experience that deep down belief that God is taking care of you, there is "peace that surpasses understanding."
10. Staying overnight at the hospital with a loved one who is sick allows one to take a vacation from the reality of one's own powerlessness over the situation.
11. Hospital food really isn't that bad.
12. Sick people have touched the elevator buttons, too.
That's it for now. I may have more observations later. It looks like we may still be here for a while.
Friday, July 22, 2011
I Wonder If We're Capable of Making Any Other Type
Jacob at 1 week old:
Caitlin at about 6 weeks:
Nathaniel at 2 weeks:
Caitlin at about 6 weeks:
Nathaniel at 2 weeks:
A Gutteral Howl
I lost it the other night.
We had been told that Nathaniel would be able to come home with us on Thursday, 7/19. He had been recovering from the pneumonia that had wracked his little body since Thursday, 7/7, when his lung collapsed. They had reinflated the lung, but by Wednesday, 7/13, he had not made any progress in being able to wean down from the breathing machine.
They also noted that he had been losing blood due to natural attrition. Blood cells die after a period of time. He was not making enough blood cells to keep up with what is lost due to the natural blood cell life cycle.
They started a round of steroid treatments on Thursday, 7/14, that were to "kick start" his breathing and blood production. It worked. On Sunday, 7/17, the doctors told us that his breathing was sufficient to pull the breathing tube. His blood production picked up. Tuesday, 7/19, they told us he was looking so good that he would be able to go home on Thursday, 7/21.
Wednesday morning, 7/20, he developed an inguinal hernia. We were told no problem, fairly common in infants, docs had to deal with these all the time in newborns. He will be scheduled for surgery in 2 weeks. Hemophilia doc told us he would receive factor 8 (the blood clotting factor his little body doesn't make) infusions for 7 days prior to the surgery, and there wouldn't be any complications. We could still take him home.
On Wednesday afternoon, he spiked a fever. They took blood draws and realized he had a bacterial infection in his blood. The bacterial infection was caused by having been pricked, poked and IV'd so much that a bacteria got in. It is unrelated to the hemophilia, the pneumonia, and the hernia. The doctors came in around 9:00pm to tell Lesley what they had found, and to inform her that the treatment would be a minimum 7 day round of antibiotics given IV, which means that we would not be taking him home on Thursday. Lesley called me to tell me, because I was home with Jacob and Caitlin. We told each other that we loved each other and that we would make it through this, no matter what. We hung up.
Then I lost it.
My heart screamed at God. Inside, I was screaming things that I will never repeat in polite company. Anger. Frustration. Exhaustion. Loneliness. It all came out. A gutteral howl of pain.
About 1:00 in the morning, I wept myself to sleep.
The anger is still there. Deep down inside, I still feel it. I'm trying not to take it out on people, like lightening strikes. I find myself feeling angry everytime I pull into the hospital parking lot. I find myself wanting to blame people, the doctor who did the circumcision, the urologist who sent us home that first Sunday, the ER physicians who were trying to save his life but didn't even recognize that he needed blood, the doctors and nurses at the PICU, who have been nothing but excellent and supportive, but allowed my son to get an infection.
I find myself getting angry at the wonderful family and friends who want to support us. I want to howl, "LEAVE ME ALONE!!! You cannot possibly understand what this is like." I find myself wanting to howl at people who want to say comforting things that only sound hollow to me.
I'm just angry.
Is this grief?
I've lost the last 22 days of having my family together. I appreciate people trying to comfort me by telling me that my family is together in my heart. Bullshit. I want my family together in my home. My wife and I have not slept in the same house for 22 nights. We have not eaten supper together as a family for 22 days. We have not prayed together as a family for 22 days. We have not chilled in the living room watching Strawberry Shortcake while Jacob plays basketball on the fireplace for 22 days. I go 36 to 48 hours regularly without seeing my beautiful Jacob or Caitlin.
I'm tired. And I'm angry.
And right now, that's the best I can be.
We had been told that Nathaniel would be able to come home with us on Thursday, 7/19. He had been recovering from the pneumonia that had wracked his little body since Thursday, 7/7, when his lung collapsed. They had reinflated the lung, but by Wednesday, 7/13, he had not made any progress in being able to wean down from the breathing machine.
They also noted that he had been losing blood due to natural attrition. Blood cells die after a period of time. He was not making enough blood cells to keep up with what is lost due to the natural blood cell life cycle.
They started a round of steroid treatments on Thursday, 7/14, that were to "kick start" his breathing and blood production. It worked. On Sunday, 7/17, the doctors told us that his breathing was sufficient to pull the breathing tube. His blood production picked up. Tuesday, 7/19, they told us he was looking so good that he would be able to go home on Thursday, 7/21.
Wednesday morning, 7/20, he developed an inguinal hernia. We were told no problem, fairly common in infants, docs had to deal with these all the time in newborns. He will be scheduled for surgery in 2 weeks. Hemophilia doc told us he would receive factor 8 (the blood clotting factor his little body doesn't make) infusions for 7 days prior to the surgery, and there wouldn't be any complications. We could still take him home.
On Wednesday afternoon, he spiked a fever. They took blood draws and realized he had a bacterial infection in his blood. The bacterial infection was caused by having been pricked, poked and IV'd so much that a bacteria got in. It is unrelated to the hemophilia, the pneumonia, and the hernia. The doctors came in around 9:00pm to tell Lesley what they had found, and to inform her that the treatment would be a minimum 7 day round of antibiotics given IV, which means that we would not be taking him home on Thursday. Lesley called me to tell me, because I was home with Jacob and Caitlin. We told each other that we loved each other and that we would make it through this, no matter what. We hung up.
Then I lost it.
My heart screamed at God. Inside, I was screaming things that I will never repeat in polite company. Anger. Frustration. Exhaustion. Loneliness. It all came out. A gutteral howl of pain.
About 1:00 in the morning, I wept myself to sleep.
The anger is still there. Deep down inside, I still feel it. I'm trying not to take it out on people, like lightening strikes. I find myself feeling angry everytime I pull into the hospital parking lot. I find myself wanting to blame people, the doctor who did the circumcision, the urologist who sent us home that first Sunday, the ER physicians who were trying to save his life but didn't even recognize that he needed blood, the doctors and nurses at the PICU, who have been nothing but excellent and supportive, but allowed my son to get an infection.
I find myself getting angry at the wonderful family and friends who want to support us. I want to howl, "LEAVE ME ALONE!!! You cannot possibly understand what this is like." I find myself wanting to howl at people who want to say comforting things that only sound hollow to me.
I'm just angry.
Is this grief?
I've lost the last 22 days of having my family together. I appreciate people trying to comfort me by telling me that my family is together in my heart. Bullshit. I want my family together in my home. My wife and I have not slept in the same house for 22 nights. We have not eaten supper together as a family for 22 days. We have not prayed together as a family for 22 days. We have not chilled in the living room watching Strawberry Shortcake while Jacob plays basketball on the fireplace for 22 days. I go 36 to 48 hours regularly without seeing my beautiful Jacob or Caitlin.
I'm tired. And I'm angry.
And right now, that's the best I can be.
Monday, July 18, 2011
Harry Potter: How the Movie Missed It
Spoiler Alert: if you haven't read the Harry Potter books or seen the last of the movies, I'll give away the endinng.
I'd like to begin by saying I love the Harry Potter series, the movies and the books.
I have to say, though, that I felt disappointed in the last movie. I felt they really missed the point. I don't really blame them. I think it's easy to get so focused on the idea that either Voldemort or Harry was going to need to die, that the true point was easily missed.
This is my disappointment.
At the end of the 7th book, Harry walks into the dark forest to sacrifice himself willingly and deliberately for his friends. Voldemort then has Hagrid carry the body out, where the final confrontation takes place. Before the final fight seen, Voldemort attempts to silence the crowds several times with a silencing charm, but for some reason, the charm just doesn't hold. Voldemort attempts to torture Neville Longbottom for his loyalty to Harry, but cannot harm him, even when he sets the sorting hat on fire on top of Neville's head.
Why were Voldemort's charms unable to hold the crowd or harm Neville?
Harry knows. Harry's mother sacrificed herself out of love for Harry, thus providing him with the protection that kept Voldemort from being able to harm him as an infant. Harry's willing and deliberate self-sacrifice out of love for his friends provided them the same protection. Because Harry died out of love for his friends, Voldemort's power was broken.
Ultimately, it became irrelevant whether Voldemort died or not. He could no longer harm those for whom Harry died. I wish this had been brought out in the film.
The Dark Lord's power was not broken because he died. The Dark Lord's power was broken because Harry died...for his friends...out of love.
I really wish that had been reflected in the movie.
I'd like to begin by saying I love the Harry Potter series, the movies and the books.
I have to say, though, that I felt disappointed in the last movie. I felt they really missed the point. I don't really blame them. I think it's easy to get so focused on the idea that either Voldemort or Harry was going to need to die, that the true point was easily missed.
This is my disappointment.
At the end of the 7th book, Harry walks into the dark forest to sacrifice himself willingly and deliberately for his friends. Voldemort then has Hagrid carry the body out, where the final confrontation takes place. Before the final fight seen, Voldemort attempts to silence the crowds several times with a silencing charm, but for some reason, the charm just doesn't hold. Voldemort attempts to torture Neville Longbottom for his loyalty to Harry, but cannot harm him, even when he sets the sorting hat on fire on top of Neville's head.
Why were Voldemort's charms unable to hold the crowd or harm Neville?
Harry knows. Harry's mother sacrificed herself out of love for Harry, thus providing him with the protection that kept Voldemort from being able to harm him as an infant. Harry's willing and deliberate self-sacrifice out of love for his friends provided them the same protection. Because Harry died out of love for his friends, Voldemort's power was broken.
Ultimately, it became irrelevant whether Voldemort died or not. He could no longer harm those for whom Harry died. I wish this had been brought out in the film.
The Dark Lord's power was not broken because he died. The Dark Lord's power was broken because Harry died...for his friends...out of love.
I really wish that had been reflected in the movie.
Thursday, July 14, 2011
I Believe God is Good
I'm not one of those Polly Anna a-holes who believes "everything happens for a reason." People like to say, God is letting this happen for a reason. If you believe that, please keep it to yourself. In the state I'm in right now, I might just punch you in the face.
People say, "Everything happens for a reason," in a feeble attempt to ascribe to God the crap that happens to them in their lives so they can feel better about getting crapped on by life. I don't really want to be the disciple of a God who gives little kids hemophilia and nearly causes them to bleed to death.
No. Sometimes, shit just happens.
So what do I believe about the goodness of God?
I believe that God knows everything, and since he knows everything, he is able to put things into place that make us able to get through anything, "without men's every discovering, from beginning to end, the work which God has done" (Ecclesiastes 3:11b).
For example, the night we had to rush Nathaniel to the hospital, Lesley was completely exhausted, but "something" inside of her kept nudging her to keep her from falling asleep.
For example, Lesley and I found out that the team leader of the transport team (who was the first to recognize that Nathaniel needed blood) was the most experienced, most qualified, and most respected member of the entire transport staff.
For example, years ago, Lesley was taken by her family to a general practictioner, who eventually became our children's doctor. He will be Nathaniel's primary care doctor, too. This family doctor, our family doctor, has hemophilia.
For example, God has surrounded me and Lesley with family, friends, coworkers, club brothers, and a host of other people who offer so much support and kindness to us.
God didn't want Nathaniel to get hemophilia. God didn't want Nathaniel to bleed almost to death literally. God didn't want Nathaniel to get pneumonia. If you have to ascribe a reason for Nathaniel's illness, then the reason is original sin. All of these are the result of that original sin that separates all humanity from God. If we were in perfect union with God, Nathaniel would not be sick.
Nathaniel's illness is a result of the original sin. All of the good things we have experienced since finding out about Nathaniel's illness are gifts from God to help us through Nathaniel's illness. God was at work, even years ago when Lesley was still a child, putting things in place that will help see us through this. That's the goodness of God.
God cannot take away the cross. Suffering in this life is the result of original sin. So what He did instead was even more wonderful. He made the cross, suffering, our doorway to unity with Him, where there will be no more suffering. And he puts those people in place, the women of Jerusalem who comfort us, the Simon of Cyrene's who help us carry the burdens, and the Roman centurion's and the good thieves who tell us that they believe in us, to help us through the cross to the resurrection that awaits us on the other side.
It's Good Friday right now. It's hard. It's very hard.
I'm comforted by two things:
I am not alone. God is there, and so are those whom He has placed.
And I know Easter Sunday is coming.
People say, "Everything happens for a reason," in a feeble attempt to ascribe to God the crap that happens to them in their lives so they can feel better about getting crapped on by life. I don't really want to be the disciple of a God who gives little kids hemophilia and nearly causes them to bleed to death.
No. Sometimes, shit just happens.
So what do I believe about the goodness of God?
I believe that God knows everything, and since he knows everything, he is able to put things into place that make us able to get through anything, "without men's every discovering, from beginning to end, the work which God has done" (Ecclesiastes 3:11b).
For example, the night we had to rush Nathaniel to the hospital, Lesley was completely exhausted, but "something" inside of her kept nudging her to keep her from falling asleep.
For example, Lesley and I found out that the team leader of the transport team (who was the first to recognize that Nathaniel needed blood) was the most experienced, most qualified, and most respected member of the entire transport staff.
For example, years ago, Lesley was taken by her family to a general practictioner, who eventually became our children's doctor. He will be Nathaniel's primary care doctor, too. This family doctor, our family doctor, has hemophilia.
For example, God has surrounded me and Lesley with family, friends, coworkers, club brothers, and a host of other people who offer so much support and kindness to us.
God didn't want Nathaniel to get hemophilia. God didn't want Nathaniel to bleed almost to death literally. God didn't want Nathaniel to get pneumonia. If you have to ascribe a reason for Nathaniel's illness, then the reason is original sin. All of these are the result of that original sin that separates all humanity from God. If we were in perfect union with God, Nathaniel would not be sick.
Nathaniel's illness is a result of the original sin. All of the good things we have experienced since finding out about Nathaniel's illness are gifts from God to help us through Nathaniel's illness. God was at work, even years ago when Lesley was still a child, putting things in place that will help see us through this. That's the goodness of God.
God cannot take away the cross. Suffering in this life is the result of original sin. So what He did instead was even more wonderful. He made the cross, suffering, our doorway to unity with Him, where there will be no more suffering. And he puts those people in place, the women of Jerusalem who comfort us, the Simon of Cyrene's who help us carry the burdens, and the Roman centurion's and the good thieves who tell us that they believe in us, to help us through the cross to the resurrection that awaits us on the other side.
It's Good Friday right now. It's hard. It's very hard.
I'm comforted by two things:
I am not alone. God is there, and so are those whom He has placed.
And I know Easter Sunday is coming.
Tuesday, July 12, 2011
In Sickness and In Health
Jacob can be so funny.
Last night he was eating some waffles as a mid-evening snack (I am in the running for the Father-Of-The-Year award, and I'm pretty sure it's determined by the vote of the children?). Mouthful of waffle, he looks up at me and says, "Dad, I just don't know very much about you and mom's wedding."
I said, "Well, you were there. Don't you remember it?" He was nine months old.
"No, not really," he said, "maybe a little bit but not very much".
"I think we have a DVD around here somewhere of our wedding. Do you want to watch it?" I asked.
"I think I'd like that," he said, wrinkling his brow, thinking about it deeply. So we dug around until we found the DVD Lesley's aunt made for us, and watched it before bedtime last night.
I had forgotten that on our wedding day, I was sick. I had one of the worst cold's of my life. My voice was scratchy and crackly. I had difficulty breathing. Lesley gave it to me as an early wedding present.
It occurred to me as I watched myself say those words, "I promise to be true to you in sickness and in health," that the wedding vows really don't stipulate specifically who is sick.
I think often we hear those words (or speak those words) and interpret them to mean that we will care for our spouses whether whether they are sick or healthy. We are called to be just as true to them when we are the sick ones. What if it were Lesley's mother or father, or my mother? My vow is no less in force.
I'm sitting in the hospital room with Nathaniel, who is up and down. I am called to love my wife through his sickness, too.
I'm not sure exactly what that means right now, because I don't know how Lesley is going to need to be loved through Nathaniel's illness.
Isn't that part of the adventure? What an act of faith! Lesley believed me when I told her I would love and honor her all the days of my life. It's a good thing she didn't know on that day that I don't have the slightest clue how to do that. The other fact is, I'm very lucky, because Lesley is pretty good at letting me know how.
Ultimately, marriage is the beginning of the grand adventure. When husband and wife pledge those vows that day, they don't know what the future is going to bring. There's absolutely no way that I could have predicted having a child be as sick as Nathaniel is. But that's ok. My promise holds, and so does Lesley's. We will be true to each other, love and honor each other, in good times and in bad, for richer, for poorer, in sickness and in health, all the days of our lives. We will teach each other how to love each other for the rest of our lives, and through anything that this beautiful, funny life might throw at us.
And that's very comforting to me.
Last night he was eating some waffles as a mid-evening snack (I am in the running for the Father-Of-The-Year award, and I'm pretty sure it's determined by the vote of the children?). Mouthful of waffle, he looks up at me and says, "Dad, I just don't know very much about you and mom's wedding."
I said, "Well, you were there. Don't you remember it?" He was nine months old.
"No, not really," he said, "maybe a little bit but not very much".
"I think we have a DVD around here somewhere of our wedding. Do you want to watch it?" I asked.
"I think I'd like that," he said, wrinkling his brow, thinking about it deeply. So we dug around until we found the DVD Lesley's aunt made for us, and watched it before bedtime last night.
I had forgotten that on our wedding day, I was sick. I had one of the worst cold's of my life. My voice was scratchy and crackly. I had difficulty breathing. Lesley gave it to me as an early wedding present.
It occurred to me as I watched myself say those words, "I promise to be true to you in sickness and in health," that the wedding vows really don't stipulate specifically who is sick.
I think often we hear those words (or speak those words) and interpret them to mean that we will care for our spouses whether whether they are sick or healthy. We are called to be just as true to them when we are the sick ones. What if it were Lesley's mother or father, or my mother? My vow is no less in force.
I'm sitting in the hospital room with Nathaniel, who is up and down. I am called to love my wife through his sickness, too.
I'm not sure exactly what that means right now, because I don't know how Lesley is going to need to be loved through Nathaniel's illness.
Isn't that part of the adventure? What an act of faith! Lesley believed me when I told her I would love and honor her all the days of my life. It's a good thing she didn't know on that day that I don't have the slightest clue how to do that. The other fact is, I'm very lucky, because Lesley is pretty good at letting me know how.
Ultimately, marriage is the beginning of the grand adventure. When husband and wife pledge those vows that day, they don't know what the future is going to bring. There's absolutely no way that I could have predicted having a child be as sick as Nathaniel is. But that's ok. My promise holds, and so does Lesley's. We will be true to each other, love and honor each other, in good times and in bad, for richer, for poorer, in sickness and in health, all the days of our lives. We will teach each other how to love each other for the rest of our lives, and through anything that this beautiful, funny life might throw at us.
And that's very comforting to me.
Saturday, July 09, 2011
The Whole Story
This is more for my benefit than anyone else's. I've often found writing things out to be therapeutic.
Day 1: Thursday, June 30, 2011
Lesley said she had been having contractions nearly all afternoon, but didn't make a big deal of them. She actually saw our Ob/Gyn (who coincidentally is the wife of the doctor who would circumcise Nathaniel a few days later). Lesley told me that the Ob/Gyn was going to check on any dilation in the cervix, but stated that the cervix hadn't dropped at all, and so didn't bother.
After the appointment with the Ob/Gyn, Lesley and I went to pick up the kids. We went home, changed clothes, and took the Jacob to his swimming lesson. Before the swimming lesson, we ate supper at the Pizza Haus on McCarty. Swimming lessons over, we went home, gave the kids baths, and got ready for bed.
First I put Jacob down to bed. He goes to sleep by himself, but I usually lay with him for 5 or 10 minutes before letting him drift off. We small talk about the day and whatever is on his mind.
While I'm laying down with Jacob, Lesley usually lays down with Caitlin, doing the same. Girl talk and lots of giggling come from Caitlin's room. I went to bed and fell asleep by about 9:45pm. Lesley came in and I felt her get in bed with me about 10:10. 10:15, she rolls over at taps me on the shoulder, "Honey?"
"Yeah," I respond.
"My water just broke."
Race was on. Lesley got up and got herself and her stuff together. I went and got Jacob out of bed. I told him that we needed to go the hospital because Baby Squirt was about to be born. Jacob asked what was going to happen. I told him that Mima and Papa were going to meet us at the hospital and be with him and Caitlin, while Daddy and Mommy brought Baby Squirt into the world. He started rocking back and forth in his car seat, squeezing his hands into fists and kicking his legs. "I'm so excited," he said, "I get to see Mima and Papa."
Caitlin slept through it.
We got the hospital and Mima and Papa arrived. My mom, whom the kids call Mammy, came, too. They took Jacob and Caitlin out into the waiting room.
Lesley's Ob/Gyn came in, shocked that we were there since Lesley had just seen her earlier that day. The doc asked if we were ready to have a baby. I said, "Ready or not, here we go." Lesley asked if we could wait until July 1. The doctor just stared at her. Lesley explained that one of her best friends' birthday is July 1, and she would like to wait, if she could, so that the baby would be born on her friend's birthday. I explained that Lesley just really wanted the child's birthstone to be a ruby. Lesley stated this was an added benefit, but not her primary motivation. Well, the docs and nurses took their time, and eventually came and got Lesley to take her to the Operating Room.
I eventually got called into the operating room, where they had Lesley laid out like Jesus on the Cross, arms out stretched. They hung a curtain up across her mid-section. At 12:01, they asked, "Would dad like to tell everyone the sex?" I figured this meant they already had the kid extricated from Lesley's innards.
Nope.
I peaked over the curtain and the kids was shoulder deep in my wife. I got to see something that was slightly traumatizing, my child being pulled out of my wife. I quickly shouted, "It's a boy," and sat back down before I fainted.
Nathaniel was born at 12:01 am, July 1, 2011. By all outward appearances, he seemd perfect. When they took him to the nursery, I followed him as they stitched Lesley back up. In the nursery, the doctor and the nurse did the preliminary examination. "Perfect," the nurse stated. "Crap," I responded, "If he's already perfect, he's got nowhere to go but down." I was joking when I said that. Now it seems strangely prescient.
We finally got back to the room around 1:30 in the morning. Lesley's mom and dad took our kids with them to their house. My mom went home. Everything was awesome.
Caitlin slept through it.
Day 2: Friday, July 1, 2011
Nathaniel was perfect. We had a few visitors. People were very kind to wait to visit after Lesley had just had major surgery and needed rest. Uneventful, perfect first day with our son.
Day 3: Saturday, July 2, 2011. Started out wondefully.
Jacob and Caitlin and I spent the morning at the hospital. Around lunch time I took them out to get them something to eat and let them blow off some of their young, restless energy. While I was gone, about 12:15, the doctor came to get little Nathaniel for his cirumcision. About 45 minutes go by, and Lesley asked the nurse how things went. "The doctor will be coming to see you in a bit," was the only response she received. Of course, that set her mother's intuition into high gear.
1:30, still no response from the nurses.
2:30, no response.
About 3:00, Lesley goes into the nursery, and demands to be told what's going on. The doctor informed her that he had circumcised Nathaniel, but wasn't able to get him to stop bleeding from the circumcision site. They had decided to call the Women's and Children's Hospital in Columbia, and have him transported there where there would be pediatric specialists who would be able to manage the situation more competently than the they could.
Lesley called me. I had just returned and was pulling into the St. Mary's parking garage when the phone started ringing. She told me what was going on. We called, once again, her parents to come and get our children.
Lesley demanded that she should be discharged so that she could go with Nathaniel to the hospital in Columbia. They discharged her. However, the transport from Columbia would not allow her to ride in the ambulance with Nathaniel, so Lesley and I followed in the van, sometimes at speeds around 100 mph, in order to be there when they took him off.
They took him to the Emergency Room rather than the pediatric unit. A urologist arrived, who I have come to distrust inherently. She put stitches into his penis where the circumcision site was, and the initial evaluation showed that the doctor who did the circumcision had knicked a vascular gland. Because the head of the penis is such a vascular area, it caused excessive amounts of bleeding. The uroligist was ready to discharge us that evening.
Providence intervened. (That happens a lot during this story.) Lesley had tested Group B Strep positive, and the normal treatment for children who are born to mothers who are GBS positive is to observe them for a full 48 hours after birth. Well, because 48 hours would not be up until 12:01 am, July 3, they decided to keep him over night. They continued to repack the gauze, but never gave him a transfusion. They said they had slowed the bleeding to the point where it was no longer a threat to him. They sent us to a floor on the pediatric unit where we spent a very peaceful evening.
Day 4: Sunday, July 3, 2011
The morning was uneventful. We were told about 10:30 that Nathaniel would be discharged and we could take him home about noon. Noon came and went, and there we sat. The nurses continued primary care of him, but taught Lesley and I how to apply the vaseline seal and wrap him in the diaper to minimize the ongoing bleeding. Finally, at 3:30 in the afternoon, we walked out of the Children's hospital.
We arrived at Lesley's mom and dad's house to pick up Jacob and Caitlin. We changed Nathaniel's diaper about 4:30. There was some blood, but we were told to expect that. Mima held him after the diaper change. About 5:00, we decided to head home. When Lesley took him from her mother, Nathaniel had bled through his diaper, clothes, and basically covered the front of Mima's shirt with blood.
We didn't know what to make of it. My guess was that he peed, and because there was some blood, his pee had turned red because of the blood. Nathaniel's color was still good. He was still responsive. We changed his diaper, packed the vaseline gauze the way were told, and went home.
About 7:30, another diaper change. More blood. We packed the vaseline gauze the way were taught.
About 10:30, another diaper change. More blood. Except now Nathaniel was feeling cold to the touch and looking a little pale. We packed the vaseline gauze, put warmer clothes on him, and wrapped him tight in a warm blanket. Jacob was mis behaving pretty badly, so he had to go to be by himself that night. No daddy to lay there with him. Instead, I laid down with Caitlin and Lesley, who was totally, physically exhausted, laid down with Nathaniel.
I fell asleep in Caitlin's room with her.
Lesley, despite being totally exhausted, just couldn't seem to fall asleep. Another moment of divine meddling.
At midnight, Lesley came and woke me. "Will you come and look at Nate?" she asked, "Something's wrong." I went and looked at him.
Terror.
I've been with people as they were dying. I knew beyond any shadow of a doubt that my son was dying. His skin had turned snow white. His breaths were shallow and rattling. He was non-responsive, even to a pinch, and his eyes seemed to role into the back of his head when I would force them open. I knew my son was dying.
We called the emergency number we had been given for Women's and Children's Hospital. The nurse who I spoke to the first time told me to call the pediatric unit, and gave me the number. So I called that number, and got an automated answering machine. I cursed, and called the emergency number again. A different nurse spoke to me this time and I described Nathaniel's condition. She only confirmed what I already knew. We needed to get to the ER as quickly as possible.
I told Lesley to call her parents to come to the house to take care of Jacob and Caitlin and to get her things together. While she did this, I took Nathaniel into the bathroom and baptized him. I didn't want Lesley to know that I knew our son was dying, so I didn't tell her what I was doing. When we came out of the bathroom, Lesley asked what I was doing in there. I told her, "I baptized him." I gave him to her to hold at that moment. (For my reasoning behind having his mother hold him, see my blog below, Song of Songs 8:6.)
Lesley nearly fell down she began crying so hard. Lesley's parents arrived shortly after. Lesley asked if we should put him in his car seat. I said, "No, you hold him." Again, see my earlier post about that.
We rushed to the hospital, again, I was driving easily close to a 100 mph to get there. We arrived and the receptionist began walking us through the process of registering. At that point, a nurse peaked through and saw Nathaniel. She walked out, felt him, searched for his pulse, and said, very calmly, "We can finish this later, you come with me."
We went to the ER and within 15 seconds there were about 20 medical people gathered around our son. One of the nurses stepped back to us and asked us if we would like them to call pastoral care.
I cannot describe in words the stress of that night. I'm not even going to try.
I will say this, the normal body temperature is 98.6 degrees. Fatal body temperature usually is considered around 86 degrees (that' when the brain starts shutting down). Nathaniel's was 90 degrees. A hemoglobin count measures the number of hemoglobin proteins in your body that carry oxygen. A normal count will be above 10. 6-8 is considered critical. Less than 6 is considered fatal. Nathaniel's was 3.9. Hematicrit measures the amount of oxygen actually in your blood. A normal range is 31-55. 31-26 is considered critical. Less than 26 is considered fatal. Nathaniel's was 10.
By the numbers, Nathaniel should be dead.
Eventually, the transport arrived. The leader of the transport team, Louise, whom they called, "Weezie," took 1 look at Nathaniel, and in a kind of a "Well, duh," tone said, "This kid needs blood."
They gave him a transfusion of 25 cc's of O negative blood there at St. Mary's. It was like magic. His color turned pink. His eyes opened and he looked around with a "What the hell's going on now?" kind of look. He became responsive to pain.
They wrapped him in cellophane (I kid you not) to preserve his body heat, the little he had. His temperature at the ER was 90 degrees. We were rushed to pediatric ICU at Women's and children's, and arrived there right about 12 hours from the time we were discharged.
They gave him another 25 cc's of blood (which is the appropriate "unit" of blood for a baby of his weight). They continued to work on him until about 5:30 in the morning. They finally turned to us and said, "He's going to make it." I immediately offered, from the deepest part of my being, a prayer of thanks to God for sparing my son, and sparing me the sacrifice I thought he was calling me to make (blog: A Father's Love).
Day 5: Monday, July 4, 2011.
Lesley and I slept for about 2 hours. We awoke to find him receiving another 25 cc's of blood. He was intubated at this time. The doctor's stated that all indicators pointed to the fact that he had a blood disorder, possibly hemophilia.
We spent a lot of time that day praying, watching, waiting, doing nothing.
It was about 7:00 pm that evening when the Pediatric Resident physician came and confirmed to us that Nathaniel did have hemophilia.
He asked if we had any questions.
I couldn't help but laugh. Questions. Where do I start? Maybe with, "Why the hell did you people discharge him on Sunday when you knew that his blood count was off and there were some screwy numbers in his indicators?"
I sat there stunned.
Day 6: Tuesday July 5, 2011
Nathaniel received his first infusion of "Factor 8", the clotting factor that his little body does not make.
When a healthy person gets a cut, a series of dominoes get knocked over. Each of those dominoes is called a "Factor". When they have all fallen, the blood clots, a scab forms, and the person stops bleeding and has a protective, natural "bandaid" over the wound.
Nathaniel's body does not produce (or if less severe does not produce enough) of the 8th of those dominoes. That means when he gets a cut or a bruise or a high impact injury, the clotting process starts. When it reaches the 8th domino, however, the process stops, because he is missing Factor 8. Nathaniel's hemophilia does not cause him to bleed faster than anyone else, but because his blood does not clot to form the scab, he doesn't stop bleeding. As the events of Saturday and Sunday attest, he will eventually bleed out and die, unless some kind of intervention is provided.
The wonder of science is that they have been able to isolate each of the dominoes, each of the factors, and can give Nathaniel infusions of the specific factor his body is missing, which in turn allows the process to continue.
This day was pretty uneventful. Adjusting to the knowledge that Nathaniel has hemophilia was easier for me than it was for Lesley. My attitude was, now that we know, we can plan. It was the not knowing that was so painful to me. I knew, even before the hemophilia specialists told us in our first visit, that it would be important to help Nathaniel lead as normal a life as any other child. Protecting him in a bubble would only hurt him worse than the hemophilia in the long run. I made a lot of jokes about him not being able to ride a motorcycle, get tattoos or body piercings someday. Lesley took to those ideas fairly easily.
We met the hemotologist with whom we will be working through the Hemophilia Treatment Center, heard about the different types of hemophilia and different severity levels. We learned that it would be a month before they would run tests to determine Nathaniel's severity level, because he had the transfusions. It's necessary to make sure that he has processed the blood that is not his and it is out of his system before running tests. If we're going to know the severity of his blood disorder, we have to make sure that we're testing his blood.
Day 7: Wednesday, July 6, 2011
More adjustment and learning. Pretty uneventful. The doctor was even discussing the possibility of moving Nathaniel to the regular pediatric unit the next morning.
Day 8: Thursday, July 7, 2011
Early in the morning, before dawn, Nathaniel started to struggle. His blood oxygen saturation number was dropping regularly. It would drop; the nurses would come in, and give him a higher percentage of oxygen in his air. He would improve for a little bit, then it would drop again and the cycle would repeat.
They decided mid-morning to give him a a stronger air support, so they put him on what was called a high flow with a long pronged cpap. It helped. For a while. The cycle continued, and pretty soon he was up again to receiving 100% oxygen through the cpap. The doctor came in around noon to tell us that Nathaniel had developed a bad pneumonia, and that his right lung had collapsed. The collapse of his lung had created a vacuum in his chest, which caused his heart to shift to the right side of his chest, rather than center left. The doctor also explained that Nathaniel's heart rate, due to the stress of breathing and the shift, had spiked several times, which led to the fear that he may have a cranial hemorrhage, or bleeding on the brain. This is common in severe cases of hemophilia when the hemophiliac is under high physical stress, as Nathaniel was.
Worried sick.
The doctor said that they were going to reintubate him with a tracheal tube into his lungs, and that they would begin a process that would take several days of sucking out the mucus and fluid (affectionately known as gunk) and reinflating his right lung. The doctor said that by reinflating the lung, the heart would move back into the correct position.
When the process was over of reintubation and the first gunk extraction, they did both a head ultrasound and a chest ultrasound. The chest ultrasound came back fairly quickly. Strong heart, no internal bleeding. It would be ok once the lung was reinflated.
Lesley's parents were there, and we played cards in a feeble attempt to get our minds off the possibilities. Finally, around 7:00 pm, the doctor came in and told us that there was no bleeding in the brain. Thank you, God, again.
We went to bed that night knowing that, IF NATHANIEL SURVIVED THE PNEUMONIA, there would be no permanent brain or cardial damage.
Day 9: Friday, July 8, 2011
More watching and waiting and learning. Learning about hemophilia. Watching Nathaniel's progress in very small increments to a healthier lung. And waiting for his little body to do what they wanted it to do.
And here we are, at the end of day 10, Saturday, July 9, 2011. And we are still waiting and watching. This is the mode we will be in for the forseeable future. Nathaniel has to determine the progress at this point. He is out of the woods. He is not currently in danger of death, but that doesn't mean that he won't be if the pneumonia strikes back. His lung is looking for more clear each day. We saw an X-ray of his chest, and his heart has moved back to the center left position. Please no political jokes about that.
It is a miracle that Nathaniel is even still alive. I know that it is due to all the prayer warriors out there who have been storming heaven on our behalf. The doctors and nurses at Women's and Children's have been so kind to us. They keep saying, "Now I know there are other places you'd rather be."
I respond, "Maybe, but I would rather NOT be at my son's funeral."
Anyway, there's the whole story. Thanks, it helps getting it off of my chest.
Day 1: Thursday, June 30, 2011
Lesley said she had been having contractions nearly all afternoon, but didn't make a big deal of them. She actually saw our Ob/Gyn (who coincidentally is the wife of the doctor who would circumcise Nathaniel a few days later). Lesley told me that the Ob/Gyn was going to check on any dilation in the cervix, but stated that the cervix hadn't dropped at all, and so didn't bother.
After the appointment with the Ob/Gyn, Lesley and I went to pick up the kids. We went home, changed clothes, and took the Jacob to his swimming lesson. Before the swimming lesson, we ate supper at the Pizza Haus on McCarty. Swimming lessons over, we went home, gave the kids baths, and got ready for bed.
First I put Jacob down to bed. He goes to sleep by himself, but I usually lay with him for 5 or 10 minutes before letting him drift off. We small talk about the day and whatever is on his mind.
While I'm laying down with Jacob, Lesley usually lays down with Caitlin, doing the same. Girl talk and lots of giggling come from Caitlin's room. I went to bed and fell asleep by about 9:45pm. Lesley came in and I felt her get in bed with me about 10:10. 10:15, she rolls over at taps me on the shoulder, "Honey?"
"Yeah," I respond.
"My water just broke."
Race was on. Lesley got up and got herself and her stuff together. I went and got Jacob out of bed. I told him that we needed to go the hospital because Baby Squirt was about to be born. Jacob asked what was going to happen. I told him that Mima and Papa were going to meet us at the hospital and be with him and Caitlin, while Daddy and Mommy brought Baby Squirt into the world. He started rocking back and forth in his car seat, squeezing his hands into fists and kicking his legs. "I'm so excited," he said, "I get to see Mima and Papa."
Caitlin slept through it.
We got the hospital and Mima and Papa arrived. My mom, whom the kids call Mammy, came, too. They took Jacob and Caitlin out into the waiting room.
Lesley's Ob/Gyn came in, shocked that we were there since Lesley had just seen her earlier that day. The doc asked if we were ready to have a baby. I said, "Ready or not, here we go." Lesley asked if we could wait until July 1. The doctor just stared at her. Lesley explained that one of her best friends' birthday is July 1, and she would like to wait, if she could, so that the baby would be born on her friend's birthday. I explained that Lesley just really wanted the child's birthstone to be a ruby. Lesley stated this was an added benefit, but not her primary motivation. Well, the docs and nurses took their time, and eventually came and got Lesley to take her to the Operating Room.
I eventually got called into the operating room, where they had Lesley laid out like Jesus on the Cross, arms out stretched. They hung a curtain up across her mid-section. At 12:01, they asked, "Would dad like to tell everyone the sex?" I figured this meant they already had the kid extricated from Lesley's innards.
Nope.
I peaked over the curtain and the kids was shoulder deep in my wife. I got to see something that was slightly traumatizing, my child being pulled out of my wife. I quickly shouted, "It's a boy," and sat back down before I fainted.
Nathaniel was born at 12:01 am, July 1, 2011. By all outward appearances, he seemd perfect. When they took him to the nursery, I followed him as they stitched Lesley back up. In the nursery, the doctor and the nurse did the preliminary examination. "Perfect," the nurse stated. "Crap," I responded, "If he's already perfect, he's got nowhere to go but down." I was joking when I said that. Now it seems strangely prescient.
We finally got back to the room around 1:30 in the morning. Lesley's mom and dad took our kids with them to their house. My mom went home. Everything was awesome.
Caitlin slept through it.
Day 2: Friday, July 1, 2011
Nathaniel was perfect. We had a few visitors. People were very kind to wait to visit after Lesley had just had major surgery and needed rest. Uneventful, perfect first day with our son.
Day 3: Saturday, July 2, 2011. Started out wondefully.
Jacob and Caitlin and I spent the morning at the hospital. Around lunch time I took them out to get them something to eat and let them blow off some of their young, restless energy. While I was gone, about 12:15, the doctor came to get little Nathaniel for his cirumcision. About 45 minutes go by, and Lesley asked the nurse how things went. "The doctor will be coming to see you in a bit," was the only response she received. Of course, that set her mother's intuition into high gear.
1:30, still no response from the nurses.
2:30, no response.
About 3:00, Lesley goes into the nursery, and demands to be told what's going on. The doctor informed her that he had circumcised Nathaniel, but wasn't able to get him to stop bleeding from the circumcision site. They had decided to call the Women's and Children's Hospital in Columbia, and have him transported there where there would be pediatric specialists who would be able to manage the situation more competently than the they could.
Lesley called me. I had just returned and was pulling into the St. Mary's parking garage when the phone started ringing. She told me what was going on. We called, once again, her parents to come and get our children.
Lesley demanded that she should be discharged so that she could go with Nathaniel to the hospital in Columbia. They discharged her. However, the transport from Columbia would not allow her to ride in the ambulance with Nathaniel, so Lesley and I followed in the van, sometimes at speeds around 100 mph, in order to be there when they took him off.
They took him to the Emergency Room rather than the pediatric unit. A urologist arrived, who I have come to distrust inherently. She put stitches into his penis where the circumcision site was, and the initial evaluation showed that the doctor who did the circumcision had knicked a vascular gland. Because the head of the penis is such a vascular area, it caused excessive amounts of bleeding. The uroligist was ready to discharge us that evening.
Providence intervened. (That happens a lot during this story.) Lesley had tested Group B Strep positive, and the normal treatment for children who are born to mothers who are GBS positive is to observe them for a full 48 hours after birth. Well, because 48 hours would not be up until 12:01 am, July 3, they decided to keep him over night. They continued to repack the gauze, but never gave him a transfusion. They said they had slowed the bleeding to the point where it was no longer a threat to him. They sent us to a floor on the pediatric unit where we spent a very peaceful evening.
Day 4: Sunday, July 3, 2011
The morning was uneventful. We were told about 10:30 that Nathaniel would be discharged and we could take him home about noon. Noon came and went, and there we sat. The nurses continued primary care of him, but taught Lesley and I how to apply the vaseline seal and wrap him in the diaper to minimize the ongoing bleeding. Finally, at 3:30 in the afternoon, we walked out of the Children's hospital.
We arrived at Lesley's mom and dad's house to pick up Jacob and Caitlin. We changed Nathaniel's diaper about 4:30. There was some blood, but we were told to expect that. Mima held him after the diaper change. About 5:00, we decided to head home. When Lesley took him from her mother, Nathaniel had bled through his diaper, clothes, and basically covered the front of Mima's shirt with blood.
We didn't know what to make of it. My guess was that he peed, and because there was some blood, his pee had turned red because of the blood. Nathaniel's color was still good. He was still responsive. We changed his diaper, packed the vaseline gauze the way were told, and went home.
About 7:30, another diaper change. More blood. We packed the vaseline gauze the way were taught.
About 10:30, another diaper change. More blood. Except now Nathaniel was feeling cold to the touch and looking a little pale. We packed the vaseline gauze, put warmer clothes on him, and wrapped him tight in a warm blanket. Jacob was mis behaving pretty badly, so he had to go to be by himself that night. No daddy to lay there with him. Instead, I laid down with Caitlin and Lesley, who was totally, physically exhausted, laid down with Nathaniel.
I fell asleep in Caitlin's room with her.
Lesley, despite being totally exhausted, just couldn't seem to fall asleep. Another moment of divine meddling.
At midnight, Lesley came and woke me. "Will you come and look at Nate?" she asked, "Something's wrong." I went and looked at him.
Terror.
I've been with people as they were dying. I knew beyond any shadow of a doubt that my son was dying. His skin had turned snow white. His breaths were shallow and rattling. He was non-responsive, even to a pinch, and his eyes seemed to role into the back of his head when I would force them open. I knew my son was dying.
We called the emergency number we had been given for Women's and Children's Hospital. The nurse who I spoke to the first time told me to call the pediatric unit, and gave me the number. So I called that number, and got an automated answering machine. I cursed, and called the emergency number again. A different nurse spoke to me this time and I described Nathaniel's condition. She only confirmed what I already knew. We needed to get to the ER as quickly as possible.
I told Lesley to call her parents to come to the house to take care of Jacob and Caitlin and to get her things together. While she did this, I took Nathaniel into the bathroom and baptized him. I didn't want Lesley to know that I knew our son was dying, so I didn't tell her what I was doing. When we came out of the bathroom, Lesley asked what I was doing in there. I told her, "I baptized him." I gave him to her to hold at that moment. (For my reasoning behind having his mother hold him, see my blog below, Song of Songs 8:6.)
Lesley nearly fell down she began crying so hard. Lesley's parents arrived shortly after. Lesley asked if we should put him in his car seat. I said, "No, you hold him." Again, see my earlier post about that.
We rushed to the hospital, again, I was driving easily close to a 100 mph to get there. We arrived and the receptionist began walking us through the process of registering. At that point, a nurse peaked through and saw Nathaniel. She walked out, felt him, searched for his pulse, and said, very calmly, "We can finish this later, you come with me."
We went to the ER and within 15 seconds there were about 20 medical people gathered around our son. One of the nurses stepped back to us and asked us if we would like them to call pastoral care.
I cannot describe in words the stress of that night. I'm not even going to try.
I will say this, the normal body temperature is 98.6 degrees. Fatal body temperature usually is considered around 86 degrees (that' when the brain starts shutting down). Nathaniel's was 90 degrees. A hemoglobin count measures the number of hemoglobin proteins in your body that carry oxygen. A normal count will be above 10. 6-8 is considered critical. Less than 6 is considered fatal. Nathaniel's was 3.9. Hematicrit measures the amount of oxygen actually in your blood. A normal range is 31-55. 31-26 is considered critical. Less than 26 is considered fatal. Nathaniel's was 10.
By the numbers, Nathaniel should be dead.
Eventually, the transport arrived. The leader of the transport team, Louise, whom they called, "Weezie," took 1 look at Nathaniel, and in a kind of a "Well, duh," tone said, "This kid needs blood."
They gave him a transfusion of 25 cc's of O negative blood there at St. Mary's. It was like magic. His color turned pink. His eyes opened and he looked around with a "What the hell's going on now?" kind of look. He became responsive to pain.
They wrapped him in cellophane (I kid you not) to preserve his body heat, the little he had. His temperature at the ER was 90 degrees. We were rushed to pediatric ICU at Women's and children's, and arrived there right about 12 hours from the time we were discharged.
They gave him another 25 cc's of blood (which is the appropriate "unit" of blood for a baby of his weight). They continued to work on him until about 5:30 in the morning. They finally turned to us and said, "He's going to make it." I immediately offered, from the deepest part of my being, a prayer of thanks to God for sparing my son, and sparing me the sacrifice I thought he was calling me to make (blog: A Father's Love).
Day 5: Monday, July 4, 2011.
Lesley and I slept for about 2 hours. We awoke to find him receiving another 25 cc's of blood. He was intubated at this time. The doctor's stated that all indicators pointed to the fact that he had a blood disorder, possibly hemophilia.
We spent a lot of time that day praying, watching, waiting, doing nothing.
It was about 7:00 pm that evening when the Pediatric Resident physician came and confirmed to us that Nathaniel did have hemophilia.
He asked if we had any questions.
I couldn't help but laugh. Questions. Where do I start? Maybe with, "Why the hell did you people discharge him on Sunday when you knew that his blood count was off and there were some screwy numbers in his indicators?"
I sat there stunned.
Day 6: Tuesday July 5, 2011
Nathaniel received his first infusion of "Factor 8", the clotting factor that his little body does not make.
When a healthy person gets a cut, a series of dominoes get knocked over. Each of those dominoes is called a "Factor". When they have all fallen, the blood clots, a scab forms, and the person stops bleeding and has a protective, natural "bandaid" over the wound.
Nathaniel's body does not produce (or if less severe does not produce enough) of the 8th of those dominoes. That means when he gets a cut or a bruise or a high impact injury, the clotting process starts. When it reaches the 8th domino, however, the process stops, because he is missing Factor 8. Nathaniel's hemophilia does not cause him to bleed faster than anyone else, but because his blood does not clot to form the scab, he doesn't stop bleeding. As the events of Saturday and Sunday attest, he will eventually bleed out and die, unless some kind of intervention is provided.
The wonder of science is that they have been able to isolate each of the dominoes, each of the factors, and can give Nathaniel infusions of the specific factor his body is missing, which in turn allows the process to continue.
This day was pretty uneventful. Adjusting to the knowledge that Nathaniel has hemophilia was easier for me than it was for Lesley. My attitude was, now that we know, we can plan. It was the not knowing that was so painful to me. I knew, even before the hemophilia specialists told us in our first visit, that it would be important to help Nathaniel lead as normal a life as any other child. Protecting him in a bubble would only hurt him worse than the hemophilia in the long run. I made a lot of jokes about him not being able to ride a motorcycle, get tattoos or body piercings someday. Lesley took to those ideas fairly easily.
We met the hemotologist with whom we will be working through the Hemophilia Treatment Center, heard about the different types of hemophilia and different severity levels. We learned that it would be a month before they would run tests to determine Nathaniel's severity level, because he had the transfusions. It's necessary to make sure that he has processed the blood that is not his and it is out of his system before running tests. If we're going to know the severity of his blood disorder, we have to make sure that we're testing his blood.
Day 7: Wednesday, July 6, 2011
More adjustment and learning. Pretty uneventful. The doctor was even discussing the possibility of moving Nathaniel to the regular pediatric unit the next morning.
Day 8: Thursday, July 7, 2011
Early in the morning, before dawn, Nathaniel started to struggle. His blood oxygen saturation number was dropping regularly. It would drop; the nurses would come in, and give him a higher percentage of oxygen in his air. He would improve for a little bit, then it would drop again and the cycle would repeat.
They decided mid-morning to give him a a stronger air support, so they put him on what was called a high flow with a long pronged cpap. It helped. For a while. The cycle continued, and pretty soon he was up again to receiving 100% oxygen through the cpap. The doctor came in around noon to tell us that Nathaniel had developed a bad pneumonia, and that his right lung had collapsed. The collapse of his lung had created a vacuum in his chest, which caused his heart to shift to the right side of his chest, rather than center left. The doctor also explained that Nathaniel's heart rate, due to the stress of breathing and the shift, had spiked several times, which led to the fear that he may have a cranial hemorrhage, or bleeding on the brain. This is common in severe cases of hemophilia when the hemophiliac is under high physical stress, as Nathaniel was.
Worried sick.
The doctor said that they were going to reintubate him with a tracheal tube into his lungs, and that they would begin a process that would take several days of sucking out the mucus and fluid (affectionately known as gunk) and reinflating his right lung. The doctor said that by reinflating the lung, the heart would move back into the correct position.
When the process was over of reintubation and the first gunk extraction, they did both a head ultrasound and a chest ultrasound. The chest ultrasound came back fairly quickly. Strong heart, no internal bleeding. It would be ok once the lung was reinflated.
Lesley's parents were there, and we played cards in a feeble attempt to get our minds off the possibilities. Finally, around 7:00 pm, the doctor came in and told us that there was no bleeding in the brain. Thank you, God, again.
We went to bed that night knowing that, IF NATHANIEL SURVIVED THE PNEUMONIA, there would be no permanent brain or cardial damage.
Day 9: Friday, July 8, 2011
More watching and waiting and learning. Learning about hemophilia. Watching Nathaniel's progress in very small increments to a healthier lung. And waiting for his little body to do what they wanted it to do.
And here we are, at the end of day 10, Saturday, July 9, 2011. And we are still waiting and watching. This is the mode we will be in for the forseeable future. Nathaniel has to determine the progress at this point. He is out of the woods. He is not currently in danger of death, but that doesn't mean that he won't be if the pneumonia strikes back. His lung is looking for more clear each day. We saw an X-ray of his chest, and his heart has moved back to the center left position. Please no political jokes about that.
It is a miracle that Nathaniel is even still alive. I know that it is due to all the prayer warriors out there who have been storming heaven on our behalf. The doctors and nurses at Women's and Children's have been so kind to us. They keep saying, "Now I know there are other places you'd rather be."
I respond, "Maybe, but I would rather NOT be at my son's funeral."
Anyway, there's the whole story. Thanks, it helps getting it off of my chest.
Wednesday, July 06, 2011
A Father's Love
I hope that no one took my words wrong in my previous post, believing that I was suggestng that as a father, I am not bonded to my children, or worse, that a father does not love his children. Nothing could be further from the Truth.
The Truth is, I cannot love my children the same way as their mother. But I'm not supposed to.
If a father's love and a mother's love were the same, then God would not have "created them male and female." We would all be the same gender. No, instead God created us "in his image, male and female he created" us. The father plays an essential, complimentary, and no less important role to the mother.
As a father, I will always be the outsider, the other in the trinity of the divine institution of the family, Father, Mother, Child. That's because God is the Other. The father is the image of God the Transcendent, who is outside of us, watching over us, protecting us, looking at the big picture.
A mother, on the other hand, is the image of God the Intimate, who comforts us, holds us, is within us, and nourishes us.
In the events that took place this last Sunday evening with Nathaniel, as a father, I had a very important role to play. As I held my son under the baptismal waters, I was Abraham sacrificially giving my son back to God. (Thank God, like Abraham, God spared me that sacrifiice.) As I drove to the hospital, as Lesley was holding my son (and I believe holding his soul bound to hers), I was praying, "Lord, into your hands I commend his spirit." Because I am father, I am the one called to give him up in sacrifice, or at least be prepared to.
Please don't take these words in the sense that I did not want my son to live. King David prayed through fasting and sacrifice for the life of his son. The child died anyway. King David rose from his prayer, bathed, and ate. When asked why he acted this way, he replied that God had seen fit not to answer his prayer, so what more should he do? This seems callous, but it's actually an image of a father who accepted the will of almighty God. That is my love as a father: to always be willing to obey God even to the point of sacrificing that which I hold most precious to me. Joseph, the husband of Mary, sacrificed his ancestral home, his livelihood, his own security for the sake of Jesus.
Another role I have as a father is to sacrifice myself for my wife, so that Lesley can fulfill her very special role of being the image of God the Intimate. What I wrote earlier was a celebration of that special vocation of hers as Mother. If I approach her relationship with jealousy over her place in my children's lives, I poison myself, my relationship with her, and my relationship with my children. So instead I celebrate her intimate, nourishing, life-gving bond with our children.
In the same token, Lesley should and does sacrifice herself for me so that I can perform my role as a father in the image of God the Transcendant. And believe me, she celebrates my transcendant, protective, life-giving role in our children's lives.
In the whole thing that went down Sunday night, Lesley and I each did our part as the image of God to which we are called by our vocation in marriage, equally, complimentarily, generously, stressfully, and most importantly, faithfully.
The Truth is, I cannot love my children the same way as their mother. But I'm not supposed to.
If a father's love and a mother's love were the same, then God would not have "created them male and female." We would all be the same gender. No, instead God created us "in his image, male and female he created" us. The father plays an essential, complimentary, and no less important role to the mother.
As a father, I will always be the outsider, the other in the trinity of the divine institution of the family, Father, Mother, Child. That's because God is the Other. The father is the image of God the Transcendent, who is outside of us, watching over us, protecting us, looking at the big picture.
A mother, on the other hand, is the image of God the Intimate, who comforts us, holds us, is within us, and nourishes us.
In the events that took place this last Sunday evening with Nathaniel, as a father, I had a very important role to play. As I held my son under the baptismal waters, I was Abraham sacrificially giving my son back to God. (Thank God, like Abraham, God spared me that sacrifiice.) As I drove to the hospital, as Lesley was holding my son (and I believe holding his soul bound to hers), I was praying, "Lord, into your hands I commend his spirit." Because I am father, I am the one called to give him up in sacrifice, or at least be prepared to.
Please don't take these words in the sense that I did not want my son to live. King David prayed through fasting and sacrifice for the life of his son. The child died anyway. King David rose from his prayer, bathed, and ate. When asked why he acted this way, he replied that God had seen fit not to answer his prayer, so what more should he do? This seems callous, but it's actually an image of a father who accepted the will of almighty God. That is my love as a father: to always be willing to obey God even to the point of sacrificing that which I hold most precious to me. Joseph, the husband of Mary, sacrificed his ancestral home, his livelihood, his own security for the sake of Jesus.
Another role I have as a father is to sacrifice myself for my wife, so that Lesley can fulfill her very special role of being the image of God the Intimate. What I wrote earlier was a celebration of that special vocation of hers as Mother. If I approach her relationship with jealousy over her place in my children's lives, I poison myself, my relationship with her, and my relationship with my children. So instead I celebrate her intimate, nourishing, life-gving bond with our children.
In the same token, Lesley should and does sacrifice herself for me so that I can perform my role as a father in the image of God the Transcendant. And believe me, she celebrates my transcendant, protective, life-giving role in our children's lives.
In the whole thing that went down Sunday night, Lesley and I each did our part as the image of God to which we are called by our vocation in marriage, equally, complimentarily, generously, stressfully, and most importantly, faithfully.
Song of Songs 8:6
A hemoglobin count measures the number of hemoglobin proteins in your blood that carry oxygen. Normally, a hemoglobin count of 6 means death. On Sunday night when we arrived at the ER, Nathaniel's was 3.9.
His body temperature was 90 degrees.
The doctors told us that bascially he had bled out so much that the only parts of his body that had oxygenated blood were his brain, his lungs and his heart.
When I was a priest, I was with people when they died. I know what death looks like. When Lesley came and got me on Sunday night and asked me to look at Nathaniel, I knew he was dying. I knew it with as much conviction as I know that I'm sitting here typing this. I honestly believed he would not survive the ride the 5 miles from our house to the emergency room.
We called Lesley's parents to come and watch our children, and Lesley began to prepare things to take to the hospital. While she was doing that, I took Nathaniel into the bathroom, and I baptized him. When I came out, I gave him to his mother to hold him.
Lesley's parents arrived. As we were getting into the car, Lesley asked if she should put him in his car seat. I said, "No, you hold him." She held him all the way to the hospital.
In my heart, I know that is what is saved his life.
Song of Songs 8:6
Set me as a seal on your heart,
as a seal on your arm;
For stern as death is love,
relentless as the nether world is devotion;
its flames are a blazing fire.
There is a bond that exists between a mother and her child, a love that grows between them and within them just as real as the body that grows in the mother's womb. This bond of love is strong as death, relentless as the netherworld.
I think Lesley, by holding her son, kept his soul in this world.
The love that a mother and her child have for each other is a spiritual reality. It cannot be comprehended cognitively. It cannot be touched or understood empirically. It can't even be felt emotionally. It is a spiritual reality, too deep for our feeble human senses to comphrehend.
I believe that Nathaniel could see the Angel of Death beckoning him on Sunday night. I also believe that between them was a force, stern as death, just as powerful, that kept Nathaniel from heeding that call, Lesley's love for him and his for her.
My son is alive because of his mother's love.
His body temperature was 90 degrees.
The doctors told us that bascially he had bled out so much that the only parts of his body that had oxygenated blood were his brain, his lungs and his heart.
When I was a priest, I was with people when they died. I know what death looks like. When Lesley came and got me on Sunday night and asked me to look at Nathaniel, I knew he was dying. I knew it with as much conviction as I know that I'm sitting here typing this. I honestly believed he would not survive the ride the 5 miles from our house to the emergency room.
We called Lesley's parents to come and watch our children, and Lesley began to prepare things to take to the hospital. While she was doing that, I took Nathaniel into the bathroom, and I baptized him. When I came out, I gave him to his mother to hold him.
Lesley's parents arrived. As we were getting into the car, Lesley asked if she should put him in his car seat. I said, "No, you hold him." She held him all the way to the hospital.
In my heart, I know that is what is saved his life.
Song of Songs 8:6
Set me as a seal on your heart,
as a seal on your arm;
For stern as death is love,
relentless as the nether world is devotion;
its flames are a blazing fire.
There is a bond that exists between a mother and her child, a love that grows between them and within them just as real as the body that grows in the mother's womb. This bond of love is strong as death, relentless as the netherworld.
I think Lesley, by holding her son, kept his soul in this world.
The love that a mother and her child have for each other is a spiritual reality. It cannot be comprehended cognitively. It cannot be touched or understood empirically. It can't even be felt emotionally. It is a spiritual reality, too deep for our feeble human senses to comphrehend.
I believe that Nathaniel could see the Angel of Death beckoning him on Sunday night. I also believe that between them was a force, stern as death, just as powerful, that kept Nathaniel from heeding that call, Lesley's love for him and his for her.
My son is alive because of his mother's love.
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