Thursday, April 29, 2010

My life turned upside down...sideways...inside out

April 29, 2010: If I allow myself, I will live the moment all over again. A moment in time when such a simple thing as a phone call sent me hurdling into a world I never knew existed within the world. A world in which an enzyme slacking on its job can upset a seemingly simple internal human cycle. A UCD world. Six years ago today I crossed the threshold, only looking back to grieve the loss of the world I knew. Being honest with myself, I still do sometimes. Think about what could have been. And then I look at Coulby. Having been diagnosed with Citrullinemia at 4 days fresh, he has never known any other existence. And he smiles. Laughs. Plays. Pretends. He is happy. Content with the life he has been given. Citrullinemia and all.

*May 5, 2010: I started this blog on the 6 year anniversary of Coulby's diagnosis and could not finish it. Not because my emotions overcame me. Not because I found it difficult to talk about how my life was turned inside out by Citrullinemia. But because it is truly a task to convey what it feels like to go from having a seemingly "normal" newborn to one who is diagnosed with a potentially fatal disorder. Those who have never experienced this just have no idea how it feels, to no fault of their own. My hope was to recap that day in such a way that everyone, UCD families or not, could experience what I felt. And I just do not know if I can do that. Taking a break from the post does not seem to have sparked any creativity.

I remember a lot about April 29, 2004, but I can honestly say that certain details are blurred. I am not sure if that is my way of protecting myself from feeling the despair all over again, but my brain was overloaded that day with words not even remotely close to those existing in my vocabulary. Coulby was so tiny and perfect. So innocent. And he was a pincushion. 4-days-old with an IV in his tiny veins. I did not know if he would make it through the night. I did not know if he had any chance at a normal future. I did not know if he had suffered any brain damage. Everything that I ever thought I knew or had any control over ceased to exist that day. And it has never, ever been the same since.

Coulby has grown into the most amazing little man. He has fought his battles and overcome all of them with grace and a smile. He goes to public school (something I was not sure he would ever do), he has gotten through illnesses at home, he can eat anything as long as it is in moderation, he laughs, he plays, he talks (a lot...and loudly), he walks, he writes his own name, he spells small words, he comprehends...all things that a 6-year-old little boy should do. He has come a long way from the screaming 4-day-old baby hooked up to an IV and wires. And I have come a long way from the new mom whose world seemed to rip apart at the seams in an instant. While this is not necessarily the life I would have chosen for my baby boy, it is the life he has been given; I have been given. And I draw from his strength to keep me going during the best of times, and during the worst of times. Coulby is my hero. My little miracle. My inspiration.

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