There have been many days that have challenged my faith, my spirit, my determination, and my patience. That first year of living with Citrullinemia was as much a learning experience as it was a personal journey. I almost grieved the loss of having a "normal" experience upon bringing my newborn home. My first born. My beautiful baby boy. And as difficult as Coulby's diagnosis was for me, it was even harder for him. Becoming a human pin cushion. Having to drink so many ounces of formula each and every day, sometimes having it pushed on him when his little belly was full. And the meds! My husband and I have tasted them and...well, let me say that my eyes watered and I nearly lost my lunch!
We began calling the nurses by name because Coulby was in and out of the hospital for various reasons (illness, dietary and medication adjustments). They were always happy to see him, and we were never too happy to see them. Not because we did not like them, but because Hopkins became synonymous with blood draws and hyperammonemia. Every time Coulby was hospitalized, it was not only scary, but emotionally and physically exhausting. I would look out of the window, permanently sealed shut, and watch the people walk the streets of Baltimore going about their daily morning, afternoon and evening routines, oblivious to the world on the other side of the window. I was helpless, often angry, and depressed. I never knew what each day would bring: Would Coulby have a good appetite today? Will today be the day he needs to be hospitalized? Should I risk exposure to public germs just to preserve my sanity?
Although I cannot pinpoint the exact hour on the exact day, I know that something hit me that seemed to take some of the weight off of my shoulders and help me to breath again: My son is a fighter. A survivor. And I am surviving. Step by step. Day by day. And now, year by year.
To say that this journey never challenges me anymore would be a lie. But I have learned to live with it, and to seek the guidance from God that I need to take care of Coulby. I only wish that there had been someone out there, someone who knew exactly what I was going through and had been there too; who could have held my hand through that first year. Just to guide me. Reassure me. Educate me. And provide some hope when I thought all was lost.
Now I am getting the chance to be that person that I always longed for. In May 2008, Coulby's nutritionist told me that there was another baby boy born in the state of Maryland and diagnosed with partial Citrullinemia. Really??? She asked if I would be willing to meet them some day in the future, when everyone was ready. I said yes. What else would I have said? The opportunity came sooner than I expected.
Coulby was scheduled for a routine appointment at Hopkins. It was the same day that the above referenced baby was to be discharged. Almost like a meeting of fate. God knowing it was something I needed just as much as the baby's family needed.
Corrigan. I snuck a peek at him as we walked into the all-too-familiar hospital room. Hooked up to an IV, cords coming from every which way, almost like tentacles, I saw my son in Corrigan. His parents and big brother stood to meet us. Mindy, Mark and Connor. And I smiled and said "hello," but what I felt like doing was crying. Because I saw myself standing in their spot just four years prior. Because I remembered the feelings of uncertainty, fear, and pure despair. Geez, what would they think if I just broke down and started crying? I would terrify them! So I sucked it up and we got to talking. The conversation came easily. General "getting-to-know-you" talk, and of course, Citrullinemia talk. Questions. Answers. I really wanted to help this family, who so reminded me of my own. We exchanged information and said goodbye, vowing to be in touch. This was a great opportunity for me to be able to share some of my Citrullinemia experiences, and hopefully prevent some of the heartache and despair I had felt when I thought there was no one to talk to.
In the months since, Mindy and I have found common ground because our sons share the same disorder, and because we seem to be kindred spirits. We have common interests, and often seem to live parallel lives. She has been a friend outside of our Citrullinemia lives. The friend that I have needed, even if I did not know it.
You know how people say, "Things happen for a reason," or "God has a plan for everyone?" They are right. Even when it seems like the world is closing in on you. Keep the faith!