Sunday, September 21, 2008

seven months old...

As I'm sure you all understand, time is no longer of the essense, if you will. Or really, it is. The things that before always HAD to be done, really aren't quite as necessary in our lives. What is of the essence, though, is Colin. So much so that Rebecca has now crafted a daily schedule for us to use so we don't forget a nebulizer treatment, or one of the many new steps in feeding him, or a session of chest pt (gently thumping on this back and chest). So many things involving Colin and taking care of him are more "of the essence" now than they ever were in our eyes before. It is crazy how adjusting your life because you absolutely have to can give you a glimpse into how selfish you really are as a person. And slowly but surely, through this process, we are stripping down layer upon layer of selfish pride to provide completely selfless care for our son.

Sitting in his room, by his crib, between 9 and 10 each night, holding a breathing mask up to his face so he can take in the different drugs pumping through the nebulizer, there are moments that I look at him and I can think of no where else I would rather be, and yet in the same moment, I don't want to be there at all. I want to be downstairs watching tv, or lying in bed next to my wife. I don't want to have to play "doctor" day in and day out for my son. I think ahead to our future and I don't want to spend a week or more each year by my son's hospital bed because his breathing had become too bad for us to care for him in our home. These are my selfish desires. I don't want them so Colin doesn't have to go through it all, I want them because I don't want to go through it all.

And in that same moment, I am back to not wanting to leave Colin's side. To always wanting to protect him and provide for him, and watch him grow into a stellar young man and sweep some lovely, unsuspecting young girl off her feet. I want to instill in him a desire to dream big and love intensely and live adventurously. These are all things that I wanted since the moment we found out Rebecca was pregnant. I want to love him unconditionally and I pray that through those devastating moments when the neurons in my brain are colliding with the reality and the gravity of Colin's situation, that God would provide both Rebecca and myself with the strength and the courage to rise above the "me" culture in which we live, which infects us both, and see to it that our actions towards Colin are completely and utterly for him, 100% organic and pure.

So as for the essence of time, the blog really hasn't been gaining any ground on the list. It is evenings like tonight, when Colin goes down for bed smoothly (which is actually happening much more often lately), that I am able to squeeze in some time for things like this. And so instead of a real update with all the details of our life over the past few weeks, here is an even truer update into our hearts and our desires. To all of you, thank you so much for all you have done over the past several weeks. Please know, even if we haven't had a chance to thank you personally, that you are all greatly appreciated. I also know that many of you have sent emails and written letters and the like, and while we haven't been able to respond to every one just yet, please know we have received them and we thank you so much for your offerings of support and prayer. We humbly accept them all.

Soon I will have to add more pictures to Picasa of our incredible growing boy. Thanks to the enzymes he is now taking, he is bulking up quite nicely. I will be sure to let you know when I do. For now, adios.

Wednesday, September 3, 2008

sixty five roses

Colin, Rebecca and I arrived home from Levine Children's Hospital on Monday afternoon and got started right away on laying our schedule over the next few days: full of Albuterol treatments, medicine giving and feeding schedules with new precautions to counteract Colin's reflux. It was a lot, but we were ready.

After twenty-four hours at home, Colin was back to his pediatrician for a follow-up appointment, where the doctor recommended he be tested for cytic fibrosis. Time out.

Now, at the hospital, the attending doctor had mentioned CF, as we now know it, but only as something they would have tested for if he had been sick for a month and still not getting any better. This had only been two weeks, a long time, but still not so long as to still have some lingering congestion, in a baby nonetheless. But after looking at Colin's growth chart and all of the respiratory issues going on with the cold and pneumonia, she said it couldn't hurt. Gulp.

This morning Colin was back at Levine for the test and around 1:30 Rebecca called me with the results. Colin was positive for cystic fibrosis, or the moniker that it has come to have: sixty five roses. Big Gulp.

So what does this mean? What is cystic fibrosis exactly? Isn't it that crippling joint disease? 

According to the Cystic Fibrosis Foundation:

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

- clogs the lungs and leads to life-threatening lung infections; and

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Scary? Yes. Crazy? Yes. Will we make it through? Yes. Friday we will meet with a pulmonologist who will go over a ton of information about the disease and give us an opportunity to ask any questions we might have. From there we will schedule the second test and at the same appointment go ahead and test his body to see what type of CF he does in fact have. The information learned from that test will help us determine what combination of treatments Colin will need.

Needless to say, this week has been insane, but we are up for the challenge that is before us. Of course, a part of us wants to be able to raise our son without having to give him special treatments, or give him medicines with every meal, or take extra precautions when he is going to be exposed to people who are sick, but the reality is that our son has cystic fibrosis and we are ready to do what we need to do.

Tonight, when I came into the house from work, I looked at Colin and he smiled back and gave a little laugh, and all I could about was, there's my son, the same as he's always been. The reality is, that is true. Nothing has changed about Colin, only the information, the knowledge, we have.

I love him so much and while I know there are challenges before us, I am more excited than ever to see the man that my son will become.

If I may make one request: please pray. For Colin, for our own abilities, for our emotions, and for our sanity through all of this. Thank you.