Jacob had his kindergarten check-up a couple of weeks ago. Healthy as a horse, of course. He had to get his 5 year old vaccinations, but no big deal. Lesley said he was a real trooper and didn’t even cry. Except a couple of days later when he went up to Lesley and announced, “Mom, I think I caught hemophilia from my shots.”
Jacob has put together shots with hemophilia, because “shots” is the word that we have been using to describe the thrice weekly infusions that Nathaniel needs to receive.
The word “thrice” should be used more often.
It seems to me a very natural connection in the mind of a 5 year old. “Getting shots” is the treatment for hemophilia. If Jacob received shots, he must have hemophilia, too. Since he didn’t have it before he got the shots, but he got shots anyway, then he must have gotten it from the shots. Makes perfect sense.
Jacob’s been the victim of another illness that we’ve called “Hezafaken Syndrome.” The symptoms are being able to breathe out, but not in, itchy spots under his feet, ear wax effusing from the ears, and being so sick that he cannot even muster the energy to run a fever. He’s had this and several other variants on multiple occasions over the last month or so.
Jacob has been more and more protesting that he is sick or that he has some other malady that demands immediate attention.
Caitlin has been showing some interesting behaviors, too. She used to be highly independent. She did not want us to help her do anything. Now, she wants to be carried through the store, sit on our laps at dinner time, drink out of “sippy cups,” and she has been exhibiting all kinds of physical injuries for which she needs band aids, Dora or Disney Princess preferred, thank you very much.
We’ve spent so much time over Nathaniel: the hospitalization, the subsequent pulmonary problems, the bleeds (averaging 2 per week in November) that required all of those hospital visits, the surgery earlier this month and the hospital check-ups since then, and now the thrice weekly (there it is again) visits from April, our home health nurse, to give him the infusions of blood clotting factor.
Jacob actually confessed at one point that he was feeling left out of our family.
I think I know the source of Hezafaken Syndrome. I don’t think it’s hard to figure out Caitlin’s new found clinginess.
Nathaniel’s physical health needs have demanded so much attention from both Lesley and me that Jacob and Caitlin are responding by “being sick,” being needy, reverting to what could be considered a younger stage of development when they are with us. They are increasing their need for us.
Lesley and I have tried to keep them involved. We want them to be around when Nathaniel’s receiving his infusions and breathing treatments. Caring for Nathaniel’s physical health will be a normal part of our lives, and we want Jacob and Caitlin to experience it as just what we do. We’ve even employed them to help out, especially with the breathing treatments where keeping things sterile is not as important (compared to the sterile environment necessary for the infusions). We ask them to help with Nathaniel’s bath time and changing diapers as a means of keeping them involved.
I’ve realized that’s a cop out.
The fact is if we ask them to help us give Nathaniel a breathing treatment or change a diaper or give a bath, we’re still focusing the attention on Nathaniel, not them. We praise Jacob and Caitlin for helping, giving them all kinds of affirmation about what a good big brother and big sister they are. But even that’s about Nathaniel. They’re good because they’re a good provider for Nathaniel. That doesn’t make them good in their own right, good just for being themselves.
That’s not to say we don’t want them involved in these things. We want them to be a good big brother and big sister. We cannot replace the attention they require, however, by only including them in activities involving Nathaniel. One thing we were told when we first learned that Nathaniel has hemophilia is that our lives should not revolve around his illness. It’s very hard not to let that happen, even in the way we parent our other children.
For the past couple of weeks, I’ve been taking Jacob out, just him and me once a week. He’s usually satisfied with going to McDonald’s for supper and then running an errand. We did some Christmas shopping the last time we went out. One on one, just the two of us. Interestingly, his symptoms seem to be abating a bit. We’ve switched his Wii day to the days when April comes. Usually, he can get so focused on the game he’s playing, that we can take care of the infusion and he hardly notices that April is there.
I’ve been spending more time with Caitlin, too. She has preferred my company lately to Lesley’s, becoming something of a daddy’s girl much to Lesley’s chagrin. She wants me to cuddle with her as she goes to sleep at night, wants to sit on my lap during supper, and wants to play Candy Land and Shoots and Ladders with me. I give her as much attention as I can.
Lesley, likewise, has been making more of an effort to meet with and be with Jacob and Caitlin in their own right. This is something about which Lesley and I have talked a lot. We are trying to let Jacob be Jacob, and to know that is pretty awesome. We want Caitlin to be Caitlin, and to know that she is beautiful and good because she is Caitlin.
I want Jacob and Caitlin to know that they are good in and of themselves, not only in their relationship with Nathaniel. Lesley and I want Jacob and Caitlin to know that they are important to us because they are important to us. Lesley and I want Jacob and Caitlin to know that we love them deeply, just as much as we love Nathaniel, not because of what they do for Nathaniel.
I don’t want Jacob and Caitlin growing up with resentment towards their brother because he got all the attention, or believing that they need to be sick in order to get attention themselves.
So, Nathaniel demands A LOT of attention. And we have 2 other beautiful children who need attention, too. And it is very easy to let the 2 other beautiful children “take care of themselves” in favor of Nathaniel’s immediate needs.
This is not an easy problem to solve. It’s one of those that demands moment by moment awareness. It’s one that requires that we as parents be in tune with the subtle (and sometimes not so subtle) cues our children give us. It’s one that requires faith.
I go back to what I wrote in an earlier post. I’m becoming more and more aware of my own inadequacy as a parent. I don’t know what my children need all the time. So I walk by faith. I believe that God will guide Lesley and me. I believe that God has given us all 3 of our children as beautiful gifts. I believe He will not abandon us to walk this road alone.
Lesley and I know that we need to address Jacob and Caitlin as Jacob and Caitlin, not merely as Nathaniel’s big brother and big sister. Doing that, with Nathaniel’s special health needs, is very hard, time consuming, and sometimes exhausting. Jacob and Caitlin are worth the effort, though.
I mean, they’re a couple of pretty freakin’ awesome kids.
Wednesday, December 28, 2011
Wednesday, December 14, 2011
I Never Want To Go Through That Again
During Nathaniel’s hospital stay, we had a very frank conversation with Dr. Acton, Nathaniel’s pulmonologist, about the possibility of Nathaniel having Cystic Fibrosis. The symptoms of CF are: 1. very salty tasting skin, 2. persistent coughing at times producing phlegm, 3. frequent lung infections like pneumonia or bronchitis, 4. wheezing or shortness of breath, 5. poor growth/weight gain in spite of good appetite, 6. frequent greasy or bulky stools, or difficulty with bowel movements, and 7. small growths in the nose called fleshy polyps.
Of those 7 symptoms, Nathaniel has 5. When he exerts himself, he sweats profusely, and his sweat is so salty that when it dries, it actually leaves a filmy residue on his skin. Salty skin. He coughs incessantly. He has had lung infections, considering the severe pneumonia he had a couple of weeks after his birth that caused his lung to collapse and the ongoing breathing issues with which he’s struggled. His wheezing sometimes is so loud that it can be heard from another room in the house. He’s a tank, so number 5 is ruled out. He doesn’t have so much the greasy, bulky stools, but he has very difficult bowel movements, and at times will go up to a week without pooping.
When we had the conversation with Dr. Acton, I could see the concern on his face, especially after I mentioned to him that his sweat seemed excessively salty to me. He told us that he would be tested the following morning with the golden measure “sweat test.” If Nathaniel’s sweat were excessively salty, that would be a positive test result.
I went home that night and researched CF. Nothing I read filled me with a lot of confidence. By 11:30 pm that night, I was so worried about this that I was literally physically sick. I went into the bathroom, threw up, and then I wrote the following:
I guess I'm preparing for the worst. Not really hoping for the best. I will not be surprised if the test comes back positive.
There was a time when a person with CF would not be expected to make it to kindergarten. Medical advances and better treatments have extended CF patients' lives into their 30's, sometimes early 40's. It depends on the severity level. Today, 45% of all people with CF are 18 years old or older. These statistics and information all came from the Cystic Fibrosis Foundation's website.
I'm beginning to think about what it will be like to have to bury my son. It might not happen for 40 years, but there is a level of certainty that comes from my gut that I will watch my son die.
After that last sentence, I could not write anymore.
Needless to say: I was a wreck that night.
I never want to go through that again.
But the reality is Nathaniel has severe hemophilia. Even with the factor infusions that he’s going to receive, there is no guarantee. A trauma (like a minor car accident) that might just mildly injure someone could cause in him a bleed severe enough to kill him. Teething could cause severe bleeds. He’s got 2 very active older siblings, with whom he’s going to try to keep up as they climb and jump and fall and sword fight with baseball bats. One good whack to the head could do him in.
There’s still a good chance just with the hemophilia that I will watch my son die.
I could say, “Been there, done that.” The night of July 3 to the morning of July 4. I have no doubt that night that Nathaniel could see the angels gathering around him to welcome him to heaven. We got to the ER before midnight, and it was 4:30 or 5 in the morning before we were told that our little boy was going to live. I’ve had nightmares about that night.
The Sunday immediately after that night, there was a baptism at Church. I dreamed that night that the baby that was baptized at Church was dead.
I have nightmares about it still.
I never want to go through that again, either.
But what do I do with this ongoing fear that Nathaniel will die before I do?
Why is it so different than the knowledge that my grandfather has terminal cancer? When I think about my Papa going to meet the Lord, I’m hurt, but I’m at peace. I’ve said all the things that I feel like I’ve needed to say. Our relationship is fulfilled. He knows that I love him and I’m at peace with his journey.
Maybe it’s the fear of the loss of the possibilities. Nathaniel’s life could be gone in 80 years, or it could be gone tomorrow. That doesn’t make him all that different than anybody else, really. Nathaniel forces me to look at the reality that life is fragile.
We, all of us, hang by a thread to things that could be gone to us in the blink of an eye. How empty the pursuit of these earthly things seems to me. How futile. What a monumental waste of time to spend our efforts and energy on anything other than that which will endure for eternity. “Do not store for yourselves treasures on earth, where moth and decay destroy, and thieves can break in and steal. But store up treasures in heaven, where neither moth nor decay destroys, nor thieves break in and steal. For where your treasure is, there also will your heart be.” Matthew 6:19-21.
And yet, I’m confronted by the practicality of living this life. If I give up the useless phone conferences at work over the changes they want to make in our client documentation computer program, I’d lose my job. Useless to the pursuit of the spiritual and eternal, but necessary if I’m going to put food on the table for my family. Providing for my family, though, is spiritual and eternal. I’m fulfilling the vocation to which God has called me as a husband and father.
In this context, the mundane, seemingly useless things in life become highly important. I sacrifice out of love for the greater good of my family this time and these efforts on activities that are mundane, useless, boring. By making this sacrifice, I provide for my family, and thus fulfill my spiritual calling.
It is in what we sacrifice here on earth that we store up our treasure in heaven.
Odds are that I am going to have to bury my son someday. God, please, if that time comes, please help me to offer him in a spirit of sacrifice, so that he will be among my treasures when I enter into eternity.
But, God, honestly, I never want to go through that again.
Of those 7 symptoms, Nathaniel has 5. When he exerts himself, he sweats profusely, and his sweat is so salty that when it dries, it actually leaves a filmy residue on his skin. Salty skin. He coughs incessantly. He has had lung infections, considering the severe pneumonia he had a couple of weeks after his birth that caused his lung to collapse and the ongoing breathing issues with which he’s struggled. His wheezing sometimes is so loud that it can be heard from another room in the house. He’s a tank, so number 5 is ruled out. He doesn’t have so much the greasy, bulky stools, but he has very difficult bowel movements, and at times will go up to a week without pooping.
When we had the conversation with Dr. Acton, I could see the concern on his face, especially after I mentioned to him that his sweat seemed excessively salty to me. He told us that he would be tested the following morning with the golden measure “sweat test.” If Nathaniel’s sweat were excessively salty, that would be a positive test result.
I went home that night and researched CF. Nothing I read filled me with a lot of confidence. By 11:30 pm that night, I was so worried about this that I was literally physically sick. I went into the bathroom, threw up, and then I wrote the following:
I guess I'm preparing for the worst. Not really hoping for the best. I will not be surprised if the test comes back positive.
There was a time when a person with CF would not be expected to make it to kindergarten. Medical advances and better treatments have extended CF patients' lives into their 30's, sometimes early 40's. It depends on the severity level. Today, 45% of all people with CF are 18 years old or older. These statistics and information all came from the Cystic Fibrosis Foundation's website.
I'm beginning to think about what it will be like to have to bury my son. It might not happen for 40 years, but there is a level of certainty that comes from my gut that I will watch my son die.
After that last sentence, I could not write anymore.
Needless to say: I was a wreck that night.
I never want to go through that again.
But the reality is Nathaniel has severe hemophilia. Even with the factor infusions that he’s going to receive, there is no guarantee. A trauma (like a minor car accident) that might just mildly injure someone could cause in him a bleed severe enough to kill him. Teething could cause severe bleeds. He’s got 2 very active older siblings, with whom he’s going to try to keep up as they climb and jump and fall and sword fight with baseball bats. One good whack to the head could do him in.
There’s still a good chance just with the hemophilia that I will watch my son die.
I could say, “Been there, done that.” The night of July 3 to the morning of July 4. I have no doubt that night that Nathaniel could see the angels gathering around him to welcome him to heaven. We got to the ER before midnight, and it was 4:30 or 5 in the morning before we were told that our little boy was going to live. I’ve had nightmares about that night.
The Sunday immediately after that night, there was a baptism at Church. I dreamed that night that the baby that was baptized at Church was dead.
I have nightmares about it still.
I never want to go through that again, either.
But what do I do with this ongoing fear that Nathaniel will die before I do?
Why is it so different than the knowledge that my grandfather has terminal cancer? When I think about my Papa going to meet the Lord, I’m hurt, but I’m at peace. I’ve said all the things that I feel like I’ve needed to say. Our relationship is fulfilled. He knows that I love him and I’m at peace with his journey.
Maybe it’s the fear of the loss of the possibilities. Nathaniel’s life could be gone in 80 years, or it could be gone tomorrow. That doesn’t make him all that different than anybody else, really. Nathaniel forces me to look at the reality that life is fragile.
We, all of us, hang by a thread to things that could be gone to us in the blink of an eye. How empty the pursuit of these earthly things seems to me. How futile. What a monumental waste of time to spend our efforts and energy on anything other than that which will endure for eternity. “Do not store for yourselves treasures on earth, where moth and decay destroy, and thieves can break in and steal. But store up treasures in heaven, where neither moth nor decay destroys, nor thieves break in and steal. For where your treasure is, there also will your heart be.” Matthew 6:19-21.
And yet, I’m confronted by the practicality of living this life. If I give up the useless phone conferences at work over the changes they want to make in our client documentation computer program, I’d lose my job. Useless to the pursuit of the spiritual and eternal, but necessary if I’m going to put food on the table for my family. Providing for my family, though, is spiritual and eternal. I’m fulfilling the vocation to which God has called me as a husband and father.
In this context, the mundane, seemingly useless things in life become highly important. I sacrifice out of love for the greater good of my family this time and these efforts on activities that are mundane, useless, boring. By making this sacrifice, I provide for my family, and thus fulfill my spiritual calling.
It is in what we sacrifice here on earth that we store up our treasure in heaven.
Odds are that I am going to have to bury my son someday. God, please, if that time comes, please help me to offer him in a spirit of sacrifice, so that he will be among my treasures when I enter into eternity.
But, God, honestly, I never want to go through that again.
Thursday, December 08, 2011
How Government Intrusion Hurts Small Businesses, Consumers: A Case Study
I don't know if it's really a case study, but it's a catchy title.
I've been noticing a lot more gas stations and other places putting up signs that say things like, "$0.35 charge on all debit/credit card purchases under [a specified amount]." I've also seen, "Cash only for purchases under [again, a specified amount]." I've been wondering what the heck's happening. Well, I got some information that makes it all clear.
Earlier this year, the government passed legislation aimed at "levelizing the playing field" regarding Visa and Mastercard. Basically, the law, which took effect on October 1, 2011, capped the amount of money that Visa and Mastercard are allowed to charge businesses for the use of their product, the credit and debit cards we have all come to know and love. The idea was "to protect" businesses from being gauged by Visa and Mastercard.
Well, Visa and Mastercard responded. These companies had been in the habit of giving discounted rates to small businesses like quick stop gas stations and coffee shops, beauty salons, privately owned restaurants, etc. When Visa and Mastercard could no longer charge the amount to big businesses like Walmart and McDonald's that they had been charging, they needed to make up the lost revenue to maintain their operating costs, so they discontinued the discounts they offered to small businesses. Now every business, whether it's a small coffee shop or McDonald's McCafe, Walmart or the local family owned grocer, have to pay the same percentage on every purchase.
Small businesses are now being forced to pay more to Visa and Mastercard than they were paying prior to this law taking effect. So the small businesses have to adjust in order to make up their lost revenue (the extra money they are now having to pay) to maintain their operating costs. So the small businesses are passing along this cost to the consumer, either by charging a fee or only accepting cash for small purchases.
Consumers don't like this. I don't like it. Why should I have to pay more money to use my money? So consumers are not going to small businesses anymore. They are going to McDonald's for their latte's (which you know is a desperate thing because McDonald's lattes suck). They are going to the big grocery stores when they just need to pick up that gallon of milk. They are going to big businesses, who can afford the loss on the credit or debit card purchase.
This is a perfect example of how government intrusion into the free market actually hurts small businesses and, ultimately, you and me as consumers. We seriously need to think about where our government is going, and who we vote into leadership. I'm becoming more and more libertarian.
I'm also standing more and more firmly with Henry David Thoreau:
"I HEARTILY ACCEPT the motto, — 'That government is best which governs least'; and I should like to see it acted up to more rapidly and systematically. Carried out, it finally amounts to this, which also I believe, — 'That government is best which governs not at all'; and when men are prepared for it, that will be the kind of government which they will have."
The less government intrudes in our lives, the better we will all be.
I've been noticing a lot more gas stations and other places putting up signs that say things like, "$0.35 charge on all debit/credit card purchases under [a specified amount]." I've also seen, "Cash only for purchases under [again, a specified amount]." I've been wondering what the heck's happening. Well, I got some information that makes it all clear.
Earlier this year, the government passed legislation aimed at "levelizing the playing field" regarding Visa and Mastercard. Basically, the law, which took effect on October 1, 2011, capped the amount of money that Visa and Mastercard are allowed to charge businesses for the use of their product, the credit and debit cards we have all come to know and love. The idea was "to protect" businesses from being gauged by Visa and Mastercard.
Well, Visa and Mastercard responded. These companies had been in the habit of giving discounted rates to small businesses like quick stop gas stations and coffee shops, beauty salons, privately owned restaurants, etc. When Visa and Mastercard could no longer charge the amount to big businesses like Walmart and McDonald's that they had been charging, they needed to make up the lost revenue to maintain their operating costs, so they discontinued the discounts they offered to small businesses. Now every business, whether it's a small coffee shop or McDonald's McCafe, Walmart or the local family owned grocer, have to pay the same percentage on every purchase.
Small businesses are now being forced to pay more to Visa and Mastercard than they were paying prior to this law taking effect. So the small businesses have to adjust in order to make up their lost revenue (the extra money they are now having to pay) to maintain their operating costs. So the small businesses are passing along this cost to the consumer, either by charging a fee or only accepting cash for small purchases.
Consumers don't like this. I don't like it. Why should I have to pay more money to use my money? So consumers are not going to small businesses anymore. They are going to McDonald's for their latte's (which you know is a desperate thing because McDonald's lattes suck). They are going to the big grocery stores when they just need to pick up that gallon of milk. They are going to big businesses, who can afford the loss on the credit or debit card purchase.
This is a perfect example of how government intrusion into the free market actually hurts small businesses and, ultimately, you and me as consumers. We seriously need to think about where our government is going, and who we vote into leadership. I'm becoming more and more libertarian.
I'm also standing more and more firmly with Henry David Thoreau:
"I HEARTILY ACCEPT the motto, — 'That government is best which governs least'; and I should like to see it acted up to more rapidly and systematically. Carried out, it finally amounts to this, which also I believe, — 'That government is best which governs not at all'; and when men are prepared for it, that will be the kind of government which they will have."
The less government intrudes in our lives, the better we will all be.
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