Radical Acceptance

So many people have made comments to me about how strong I am for the way I am dealing with Nathaniel’s illnesses (his hemophilia and lung problems). They’ve said the same things to Lesley. The difference is, though, that she really is strong. Me? Well…
I’m just too weak to fight with it.

Nathaniel is very sick. Even as I type this, he’s back in the hospital due to his heavy congestion. Maybe he’s not quite over the cold that sent him to the hospital last week. When we catch a cold, our lungs produce mucus that we expel to push the virus causing the cold out of our bodies. Nathaniel’s lungs, for whatever reason, are not expelling that mucus. The mucus builds up and builds up and builds up and slowly causes his lungs not to work in keeping his blood oxygen saturation at a healthy level. Dealing with this is not strength.

I’ve stuck Nathaniel on 2 different occasions, and plan on doing so again soon. I mean that I’ve put the needle into the subcutaneous port in order to infuse the blood clotting factor. I did the whole process from wiping the counter down with Clorox disinfecting wipes to make the area sterile to putting on the band aid to throwing everything away when we’re done. This is not strength, either.

I’ve had to explain to Jacob and Caitlin on many different occasions why they cannot jump on the bed or on the floor or on the couch next to him. If they were to trip and fall on him, it could cause an internal bleed that could kill him. Not strength.

What is it then?

I think I call it acceptance. This is what we do now. We take Nathaniel to the hospital when he can’t breathe. That’s just what we do. We give him his blood clotting factor. It’s a shot 3 times a week. We balance keeping him safe from his very active brother and sister with trying to make sure they know that they can touch him, love on him, and have fun with him. That’s our daily lives.

It doesn’t take strength, unless it’s the strength of acceptance. But really, accepting reality doesn’t take a heck of a lot of strength either. I’ve always found fighting reality is a lot harder than accepting it. This is kind of my approach to exercise really. I know the dumbbell’s heavy. I can accept that and move on. I don’t need to lift it to know it’s going to be hard to lift. Lifting it takes strength. I’m a very weak, out of shape person, but I accept that.

I know that it’s going to be hard to cope with Nathaniel’s illnesses. Fighting with illness takes more strength than accepting that it’s going to be hard. So often we compound our own difficulties by thinking that life should not be difficult, or wondering why this is happening to me, or grumbling about the fact that life is unfair.

Life is hard enough without making it worse by feeling bad about the fact that it’s hard. Getting angry about the fact that life is hard won’t really help the situation, either. The first of the four noble truths of Buddhism is that life is suffering. Once we accept that, life gets a little easier; because we stop fighting so much when suffering comes. Actually, it’s one of the first things Christians know about being a fallen human in a fallen world. God told Eve, in pain she would bring forth children. And to Adam, the Lord said, “By the sweat of your brow shall you get bread to eat.” Life isn’t paradise in the garden anymore. We and the world are fallen from that perfect state of creation, so we suffer.

The real trick is to accept suffering. It’s an incontrovertible consequence of our fallen state. We suffer because of original sin. What makes so much conflict in our lives is that we don’t want to accept suffering. That doesn’t mean that if I get sick I should just lay down and die. When I get a headache, I take Advil. I also know that until the Advil really kicks in, my head is going to hurt. Getting upset about that and irritable with those around me is not going to make my head hurt any less.

If I were to get cancer, I would get treatment. I would also accept the fact that I’m probably going to feel like crap from the cancer and the treatment. That’s part of the process. I would also, if it were to come to that eventually, accept the fact that all treatment has been done and there is nothing left to do. I would accept the inevitability of my own death, and make preparations. Getting mad about it; getting sad about it; being a jerk about it is not going to help the situation.

Nathaniel has hemophilia. We accept that. That doesn’t mean we let it go and hope for the best. We provide him the necessary assistance to manage it so that it will be as unobtrusive to his life as possible. We accept that, too. Nathaniel’s lungs are weak. He cannot expel the mucus that builds up in them if he catches a cold. What can I do about that? Getting mad doesn’t change the reality that this dumbbell is heavy to lift. I accept it. Jacob has to wear a patch over his eye for at least 8 weeks. I hope to teach him to accept reality as it is. We do what we have to do to manage reality. Getting mad, embarrassed, shy, sad, or upset is not going to change the fact that this is what we have to do.

In a lot of ways, Nike had it right.

Just do it.

In the end, it brings me back to Job. After losing his children, his livestock, his servants, and everything he had, the Lord then allowed Satan to strike him with an illness causing severe boils. His wife told him that he should just “Curse God and die!” (Man, I’ve wanted to say that to a few people in my time.)

“But he said to her, ‘You speak as foolish women do. We accept good things from God; should we not accept evil?’ Through all this, Job did not sin in what he said.” Job 2:10.

Ultimately, it is not strength that helps me bear up under trials. It is acceptance.

Perfect Love Drives Out Fear

I’ve been thinking of 1 John 4:18 a lot lately. A lot of people are familiar with part of this verse, “Perfect love drives out fear.” That’s not the entire verse, though.

“There is no fear in love, but perfect love drives out fear because fear has to do with punishment, and so one who fears is not yet perfect in love.”

Too often, when things happen like what has happened with my family and Nathaniel, it gets interpreted as a punishment. It was a question that I know has crossed both Lesley’s and my mind, “What did we do to deserve this?” The question, “Why is God doing this to us?” is much like it, often asked out of a sense that God is heaping troubles on us because we did something, even unknowingly, to deserve it. Even the question, "Why would God let this happen?" suggests the idea that God, although passively, has something to do with the cause of our suffering. Many people have that image of God as the punisher, wreaking vengeance for everything in our lives we’ve done that’s wrong.

If we believe that God’s love is perfect, this is unacceptable. In an earlier post, I discuss the biblical Truth that all suffering is a result of original sin. Nathaniel’s hemophilia and lung problems are due to the fact that we are separated from God while we live in this world. They are not punishments from God.

I have no need to fear, because I am doing the best I can to remain in right relationship with the God who loves me. Is my love perfect, as 1 John 4:18 requires? No, but God’s love is. I’ve moved past the being angry at God phase of all that's happened over the last six months. I’d be lying if I said I haven’t been angry with Him. In faith, though, I know that He is the source of everything good that has kept Nathaniel alive. How can I be angry with a God who has been so active, even before Nathaniel was born, in giving us what we’ve needed to enjoy him in our lives?

It wasn't easy moving beyond the anger I felt for what God allowed to happen to my little boy. It took a great deal of faith and reflection. God's permissive will allows suffering, because for him to remove suffering would be for him to rescind his gift of free will. God passively allows suffering, because it is the result of original sin, the consequence of humanity's choice as a whole to separate ourselves from Him. God actively works to be there with us through our suffering, though, so that we can lean on Him for wisdom, awe, reverence, strength, understanding courage and knowledge. (Get that, the gifts of the Holy Spirit). God joins us in our suffering so that we can experience "the peace that surpasses understanding" (Phillipians 4:7).

God has not left us in our pain. God joins us in our suffering. That's the meaning of the cross of Jesus Christ.

Hemophilia is not a punishment. Nathaniel, certainly, is not.

One of the most important things I know as a parent is that my children’s self-concept is formed by my belief in them. If I think of my children as cursed, as their hardships as punishments, their needs as awkward, their quirks as weird, however you want to put it, that’s what they are going to think of themselves. Children do not know what to think about themselves. Whether it’s something as simple as Jacob needing to wear a “pirate patch” because he has anisometropia and anisometropic amblyopia (the doctors' fancy way of saying his left eye sees better than his right eye), or something as complex as managing Nathaniel’s hemophilia, they will form their thoughts about it according to the way Lesley and I think about it.

If we make out that it’s weird and awkward that Jacob has to wear a patch for a few weeks to correct his vision, he’s going to believe that HE IS weird and awkward. I prefer to think of it as kind of cool. He’s got a doctor’s order to be a pirate for the next 2 months. If truth be told, I'm a little bit jealous.

If we think of ourselves or Nathaniel as being punished by God because Nathaniel has hemophilia, even if I never say a word about it to him, he’s going to develop a sense that HE IS a punishment to us, a curse to us. I prefer to think of him as a gift. That’s what he really is.

God gave him to us, and… “If you then, who are wicked, know how to give good gifts to your children, how much more will your heavenly Father give good things to those who ask him” (Matthew 7:11). Nathaniel is our “gift from God.”

And so are Jacob and Caitlin.

Perfect love casts out fear, because I don’t need to be afraid of being punished. I don’t love my God perfectly, but I believe in His perfect love. And I believe in His desire to help my love for Him to grow. After all, “God is love” (1 John 4:8). So while I cannot trust that a gene on an X chromosome won't mutate to cause a life long, difficult to manage illness in an infant, I can trust that God will be there next to me and Lesley and, more importantly, next to Nathaniel, for as long as he has to manage it. I can't trust that Nathaniel's lungs will ever be healed, but I can trust that God's breath of life will lift him up for eternity.

Parenting a "Normal" Sibling of a Special Needs Child

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.

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.

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.

Treatment Is A Partnership

If you’ve followed on facebook, you know of my experience at the urgent care facility. Nathaniel was having a pretty severe leg bleed, and our hemophilia doc decided he really needed multiple infusions over a couple of days. He received his first on Saturday. Once again, shout out to our dear friend Erin for her support that day.

Nathaniel is a hard stick, as far as IV’s go. The poor kid has been pricked and poked and punctured so much, that finding a vein that isn’t scarred or doesn’t collapse when they get the needle in is very difficult. This means that he usually needs to be poked multiple times in multiple veins before they get an IV that’s usable. Once he gets the IV, it’s usually a pretty quick process. It takes longer to find a vein and get him stuck than it does to give him the clotting factor.

So he gets the clotting factor on Saturday, which we were able to do at home (barely). The bleed didn’t get larger, but by Monday morning, it hadn’t shown any signs of reducing in size either, which is the indicator that the bleed has actually stopped. This isn’t unusual. Depending on the severity of the particular bleed, sometimes it takes multiple doses of the clotting factor to stop it.

By Monday, late afternoon, Lesley and the hemophilia treatment team decided another dose would be beneficial. By then, it was too late to get Nathaniel into the Hemophilia Treatment Center (HTC, for short), so she needed to take him to the urgent care at the Women’s and Children’s hospital. No problem.

She drives up. They admit him. It takes a few sticks, but they finally get the IV in a vein. They give him the clotting factor. Lesley and Nathaniel come home. It really should be that simple.

Tuesday, Lesley is in communication with the hemophilia treatment team. The bleed in his leg seems to be getting better, but not much progress, so they decide one more infusion. Once again, by the time they make the decision, it is too late to get him into the HTC, so back to the urgent care we go.

I called on my way, stating that the hemophilia doc wanted an IV run so that he could get another dose of the clotting factor. “We’re expecting you,” they said, “your wife called earlier saying you were bringing him.” Cool, this should go pretty easily.

We get there around 5:30. It took 4 sticks in 4 different veins, but on the 4th stick they got him in a vein in his ankle around 5:40. They taped it up. It was actually time for Nathaniel to receive one of his breathing treatments, so the urgent care doc took a listen to his lungs, agreed he needed one, and gave it to him. Wow. That was easy. We were waiting for them to come in and give him the factor. I mentioned to the nurse that Nathaniel has a history of digging out his IV’s, especially the ones in his feet and ankles, by rubbing his other foot against them until they come out. I told her that we needed to give him the clotting factor fairly quickly before he got it out.

“Oh,” she said, “it’s taped up too well. He won’t get it out.” That was at 6:00.

The doc came in to check on us. I told him that Nathaniel in the past has gotten his IV’s out by rubbing his feet together, and that we needed to get the clotting factor in quickly before he dug out the IV.

“He won’t dig it out,” the doc said, “it’s all taped up.” That was at 6:30.

Let me interrupt for a moment by describing Nathaniel’s desire to get his IV’s out of his skin. We went to the HTC when Nathaniel was having his thigh bleed. He was going to need multiple infusions for that one, so they decided to leave the IV in overnight. They taped all the way around his foot, where the IV was, then wrapped wash cloths around it, and taped those around it, as well. It was basically a cast on his leg.

The little bugger dug his feet together, kicked his leg like a horse, and dug his feet together some more, until sometime in the night while we were sleeping, he had gotten through the taped wash cloths, through the taped gauze, and through the tape around the IV, and dug the thing out of his foot.

He doesn’t like having IV’s in his body.

The doc at the urgent care told me he wasn’t particularly convinced that Nathaniel needed the factor, and that he wanted to confer with Dr. Gruner (the hemophilia doc) before giving it to him.

HE HAS THE IV!!! WHAT THE HELL?!!!

Let me explain: Giving clotting factor to a hemophiliac is not going to hurt him. As a matter of fact, if it isn’t needed to stop a bleed, then it actually works as a proactive preventative measure.

Give him the freakin’ factor so we can go home.

So we’ve been there an hour at this point with a needle in my boy’s ankle. The doc doesn’t want to give him the factor because he’s not sure it’s necessary. I wanted to ask the doctor how often he has to manage a hemophiliac’s healthcare, because I have to do it daily. While I know the doc has a heck of a lot of knowledge that I don’t have, this is one area where I think I may actually know more than the doc.

Another nurse comes in the room. Same exchange. Me: We need to do this quickly, blah, blah, blah. Nurse: He won’t dig it out, blah, blah, blah. This was at 7:20.

7:30, we’ve been there 2 hours, 1 hour and 50 minutes of which Nathaniel’s had a needle in his ankle. I had covered him with a blanket to keep him warm. He gives a nice hard kick and…

Blood everywhere.

I swore as I swung open the door, then I yelled down the hallway because there wasn’t anybody in sight, “He got his IV out and there’s blood all over everything.” Then I went back to Nathaniel and grabbed the blanket to hold pressure on the IV site to try stop the bleeding.

A nurse came running, one of the ones I had told earlier about him digging it out if we didn’t act quickly. Not an apology. Not an, “I’m an arrogant butthead who doesn’t listen to my patients.” Nothing. She goes to work cleaning him up as I continue to hold pressure on the IV site. The dose of clotting factor he had gotten the day before was apparently working, because after several long minutes of pressure, the bleeding at the IV site finally stopped.

They called back the nurse who had gotten the vein 2 hours ago. I told him I was pissed. I told him that I had warned them that he would dig it out if we didn’t give him the factor quickly. He didn’t really say anything.

3 more attempts at a vein somewhere on the little guy’s body, and on the 3rd try they got him in the hand. They got the IV in, gave him the factor, and told us we were ok to go home now. From when the nurse came in to stick him again to when they told us we could leave took about 15 minutes.

Unbelievable.

I work in the mental health/substance abuse side of health care. I know that there are many times that patients don’t know what they really need to make them better. That’s why we seek out health professionals. Sometimes, we don’t have the knowledge or the insight to know what really might be wrong with us or how to fix it.

But sometimes we do.

Treatment, all treatment whether it’s physical health, mental health, or substance abuse, all treatment is a cooperation between the one receiving treatment and the one providing treatment. That means we need to listen to each other. There is a real arrogance in the health treatment field among providers. Some providers believe that they have all of the answers and the patient needs to sit there and take what is given. This is a bunch of crap.

In Nathaniel’s case, we know what is wrong, and we know how to fix it. We just need someone to run an IV for us. Lesley and I have even been shown how to mix up the factor, get it into the syringe, and administer ourselves. We just need an IV to do it.

If they had listened to me last night, Nathaniel would not have been stuck an extra 3 times. Their arrogance cost Nathaniel the pain of being punctured again, and cost my family valuable time together.

We were warned that we would have to battle with medical personnel about what our son needs when we take him to seek medical help. I thought, “Oh, it can’t be that bad.” But it is. It’s frustrating. It’s painful (for Nathaniel especially, but for the rest of the family, as well, who are going through this with him.) And sometimes, it’s humiliating.

Being a provider of mental health/substance abuse services, I have resolved to be on constant guard against this arrogance in my own approach to my clients. Being a receiver of health services, I have resolved to confront it directly whenever I experience it from my providers, especially when it involves my children.

The Cloud of Uncertainty

I've always been of the opinion that babies were easy. If a baby's upset, it's basically one of three things: either the diaper needs to be changed, the belly's hungry, or the kid is tired. Anytime the baby's upset, you address these three things in order, and you have what is basically a happy baby. Fevers and rashes are the exception, in which case you usually seek medical attention by calling your pediatrician. No big deal, a quick visit to the doctor, administer some meds, and bottaboom-bottabang, you're back to the basic three.

Nathaniel has been a whole other ball of wax.

For example, our latest stint in the hospital. We decided it would be easier to have Nathaniel receive his 4 month vaccinations while in the hospital. He was in the hospital due to the compromised condtion of his lungs. Jacob brought home a cold several weeks ago, and Nathaniel picked it up. We were pretty sure he was over the cold, but he continued to be congested. The congestion was getting worse and worse, and when we realized that his breathing would actually stop at night due to the congestion, we knew it was time to seek a greater level of medical care.

We took him to the pulmonologist who wanted to stress to us that he was not hospitalizing Nathaniel due to a failure of ours. No, he was hospitalizing Nathaniel because Nathaniel needed a greater level of care than we could provide, not because we had not provided the greatest level of care that we could.

So they did round the clock breathing treatments every two hours and gave him steroids (prednazone) through an IV. 2 days later he was back to the boy we knew. He was smiling, laughing, playing, and interacting, and most importantly, breathing like normal, or at least normal for him. We decided it would be easier to make sure Nathaniel got his 4 month vaccinations and a shot of Synagis (which protects from RSV) before he left the hospital. The resident physician declined to give him a shot of the blood clotting factor prior to giving him the 5 shots in his thighs. When we asked the doctor about giving clotting, the doctor responded that he didn't need it if he wasn't bleeding.

We went home Saturday night with what we thought was a healthy baby with a sore leg (due to the injections). His right leg started to swell. And swell. And swell.

By Sunday morning, the skin around his thigh was taut. Lesley called the hemophilia treatment center nurses, who told her that it was probably a reaction to the injections. Not to worry, they told us, it would go away in a couple of days.

That didn't feel right to us, but what do we know?

We called again later because nothing we did seemed to help or comfort him. Same response.

Lesley decided to go the ER. When she arrived at the ER, Nathaniel had calmed down (read "quit screaming") during the car ride from Jefferson City to the Women's and Children's hospital in Columbia. There were so many people in the ER waiting room that they were literally seeing people in the hallway. Rather than check him in, Lesley pulled a fast one. She called the hospital and asked to speak with the on-call pediatrician. She spoke via the phone and described the situation.

The pediatrician told Lesley that the swelling was a normal reaction in infants to the 4 month vaccinations. Not to worry, go home, if it doesn't get better in a couple of days, then you have something to worry about. Lesley came home, but it still didn't feel right.

But what do we know?

Monday morning, the swelling was worse. Lesley contacted the Hemophilia Treatment Center nurses and made arrangements to have Nathaniel seen at 11:00 am. I met her at the doctor's office. It was a brief examination. Muscle bleed in the right thigh causing severe swelling. Nathaniel was given an IV in the left foot, a shot of clotting factor, and had to have an ultrasound done in order to make sure that blood was flowing through the swolen part of his leg to the lower leg. The danger of prolonged swelling like Nathaniel was experiencing is a condition called compartment syndrome, which (simplistically put) is when the swelling causes compression damage to the nerves in the leg, which could lead to long term problems.

Well, the blood was still flowing, which rules out the possibility of compartment syndrome for now. The doctor wants to see Nathaniel again on Tuesday to make sure that his swelling has gone down and he is actually out of danger of compartment syndrome.

Put all that on the back burner for a minute.

There is a book that was written in the middle ages on contemplative prayer called "The Cloud of Unknowing." The basic idea of the book is that when we enter true contemplative prayer, we enter a space (for lack of a better word) in which "knowing" is impossible, and actually futile. It's pure experience of the presence of God. God overwhelms our senses so that we do not "know" anything anymore. All we are left with is an overhwelming sense of the presence of God.

That's where I'm at with Nathaniel and his illness and all the possibilities of things that could happen as a result of his hemophilia.

I have experienced a greater degree of self-doubt and uncertainty about what I've known as a father since the day I saw Jacob's little face when he was born. Everything I thought I knew about being a dad, and frankly has worked fairly well up to this point (judging by the feedback we get on how good our children are) is out the window.

Is Nathaniel's swelling a normal reaction to his 4 month injections, as the doctors and nurses (even the hemophilia specialists) told us? Or is it an internal bleed like my gut was telling me that could lead to serious, long-term physical problems?

Is Nathaniel fussy because he's colicky? Or is he bleeding somewhere in his body that I can't tell?

Is he drifting off to sleep because he's tired? Or because he's having a brain bleed?

Is Nathaniel's breathing getting worse because he's contracted a cold? Or is he suffocating on his fluids because he's bleeding into the lungs or as a residual effect of the injury to his lungs he suffered when he was just 2 days old?

I'm overwhelmed by how little I know, and I live in a constant state of fear that my child is going to die because I guessed wrong. I'm really, really scared of guessing wrong.

Terrified, actually.

I hate that old cliche that "God never gives us anything more than we can handle."

At this point, that ranks right up there with, "Everything happens for a reason." And if you want to know how I feel about that one, see my earlier post.

And don't go quoting to me 1 Corinthians 10:13 either. That doesn't say God won't give me anything I can't handle. It says that whatever God sends our way, he gives us a way out of it. And I know what that way out of it is:

It's Him.

In raising Nathaniel (and Jacob and Caitlin, despite my strong sense of self-sufficiency and delusional belief that I had this parenting thing figured out), I am completely and totally and utterly dependent on Him. That's all I'm left with in my "cloud of uncertainty": the experience of my own powerlessness, lack of knowledge, strength, wisdom. In my cloud of uncertainty where I do not know what is the right thing to do for my child TO KEEP HIM ALIVE, I can only depend completely on my God. I have no knowledge, no insight, no wisdom, nothing that I need to care for this child (or Jacob or Caitlin). I am naked in the cold and the dark with not even the vaguest sense of where the light is.

In my cloud of uncertainty, I have nothing except the experience of my utter dependence on God.

I am completely dependent on my God.

That's where I should have known I've always been in the first place.