Thursday, April 7, 2011

What I've Learned

People are funny. I include myself in this rather bland statement. Not "ha ha" funny. More like funny because their human nature makes them unpredictable. That kind of peculiar funny. Do you follow me, or am I making absolutely no sense? Maybe further explanation is required...

My mind was wandering the other day, as it often does, and I got to thinking about all of the people I have met or crossed paths with at different points in my life. Some I have formed close friendships with and we will forever be connected. Some became mere acquaintances. And then there are those with whom I have lost touch, re-connected, and either lost touch with again or formed steadfast connections. Funny how that works sometimes. Which brings me back to the initial "people are funny" statement. You think you know who will be the one person standing next to you through anything, and I mean ANYTHING in life: highs and lows, celebrating and grieving, moments of glory and shame, times of clarity and uncertainty. The one who will accept you for just what you are, no matter what. The one you could call in the middle of the night and know he/she will answer without irritability. That person who will take your hand when no one else will. But you never really know until your friends, family, acquaintances, co-workers, get the point...are put to the test. Because people are funny like that. And they will surprise you.

I speak about people in general, but more specifically, about people in my life in relation to being a parent of a child with a UCD. This encompasses those I knew before, and met as a result of, Coulby's birth and diagnosis of Citrullinemia. I can tell you that in the days of hell following Coulby's initial hospitalization at Johns Hopkins, I was surprised over and over again. Surprised by the outpouring of support; phone calls, cards, visitors, meals. Just the genuine care and concern that people had. But mostly surprised by who reached out. There were those that I knew, and always had known, would be there during tough times. But it was the people whom I would have never expected to be there that blew me away.

Human nature is to set ourselves up for disappointment. To put expectations on ourselves or someone else that are unrealistic or unattainable. In doing so, I was disappointed by several people in my life who were not there during such a scary, traumatic, stressful and helpless point in my life. But it is also human nature to judge, unfairly or otherwise. Judging sets us up for disappointment as well, but in ourselves and not others. This brings back memories of a woman I used to work with. She was gruff and seasoned in her job, which made her a bit of a know-it-all. Well, in my opinion she was a know-it-all, which is a judgment in and of itself. I was young and she always made sure I knew that she was far older and therefore wiser than myself. It was annoying. At that time in my life, I was almost always the youngest in the office, and I heard about it: "When I was your age (fill in the blank)," "I'm old enough to be your mother," "That was long before your time, I'm sure." Anyway, this woman was not my favorite person. But do you know who was one of the first people to call when Coulby was hospitalized? Yup...that annoying, know-it-all co-worker of mine! I NEVER would have expected her to call. I mean NEVER. It was shocking. And humbling. So much so that I remember it to this day. I will remember it always.

In this world of technology, places like Facebook can link us to all of the people we have ever met, or even come into contact with, in our lives. I have met some phenomenal people online. Other UCD families who share a story similar to my own and know exactly what it means to have those people you know you can count on. When these disorders threaten our children and life gets scary and crazy and often seems unfair, they are the ones who help us through it. I suppose that really goes for every facet of life, but especially a UCD life.

My hope for my children is that they have an abundance of people, in addition to myself, who will stand beside them through anything. I hope they form those steadfast friendships young and grow to appreciate the value of such. I hope that they, too, can be that to others. When I look beside me, I know who I will see. Do you? The people you expect to be there might disappoint you. Don't discredit the know-it-all co-worker. Expect the unexpected, because people are funny...

Tuesday, February 22, 2011

Back to Blogging

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!