Let me clear the cobwebs and blow off the dust and get this blog back up and running! I've been away for a while. School happened. Long days at work happened. Life happened. And my blog, on my 'to do' list, kept getting put off until it no longer had top 10 status. But the truth is, I have missed it. Greatly. So on this day, home sick and unable to tackle any 'to do's', I reconnected with my old friend; my blog. So many months have passed between posts that it is difficult to even know where to begin. Life has changed in so many ways that it is almost unrecognizable to last year's version. And amazingly, among all of this change, one thing has remained the same: Coulby. Sure, his face has matured, he has lost some teeth along the way, he is a little taller and starting to read now and refining his Wii skills, but he is still the same miracle that he always has been. He still amazes me each and every day, as I watch him grow and mature into his future self. And he is still kicking Citrullinemia's a** and defying all odds. That's my boy!
Coulby has had his fair share of illness since the start of school, with numerous stomach bugs, colds and other assorted viruses, and (*knock on wood*) has been home to get through them all. My little boy, who has been stuck with needles and pumped full of fluids and meds and pushed to meet daily protein and calorie requirements every single day of his life (except for his first three days in this crazy world) and whose doctors were only "cautiously optimistic" at diagnosis, is...well...thriving; living! And living a pretty normal life at that. I cannot help but be amazed every time I reflect on Coulby's life. It is difficult, and downright painful, to remember the days of rushing Coulby to Hopkins at the first possible sign of illness. If he so much as hiccuped and spit up as an infant, he was whisked off to the ER to make sure some illness was not threatening to elevate his ammonia. And in those early days, when his immune system was not as strong as it has become, he did spend many sleepless nights hooked up to IV's, battling the body's natural defenses against illness that, ironically, threatened his life. Illness is still a threat and nothing to be taken lightly, but now I know Coulby can and has taken on these battles at home. And that is ultimately one thing every parent of a child with a UCD hopes for.
Coulby is strong. He takes on life without trepidation. Lives life to the fullest and accepts his disorder and all that comes with it, even when it draws him away from being carefree and innocent. I admire him most in those moments. When he has to stop playing, or take time away from fun being had by his peers, to drink formula or eat precisely weighed out food to meet his daily needs. Because it is then that I know my free-spirited Coulby wants to just do his kid thing, but switches gears just long enough to deal with the reality of Citrullinemia as a part of who he is. For those who do not witness this in their own child on a daily basis, it is hard to understand why it is so admirable. But it is. Truly.
I wish I could draw upon even a quarter of Coulby's amazing self. I know I would be better for it. His strength. His steadfast determination. His delight in life. His unreserved, loving nature. I do my best as an imperfect adult scarred by reality to teach not only Coulby, but both of my children, all of the knowledge I have to offer them. But I have found that my children teach me far more than I ever thought possible when I stop and take time to observe to them. To listen to them. To admire them!
