August 03, 2009
I’d like to say it all started with a t shirt. But it didn’t. It started way before I bought the shirt. I knew it was coming, but nothing can really prepare you. I like to say that I understand that you cannot understand anything at all until you are there. And at the risk of sounding vague, even understanding that is true in itself.
The t shirt was something I found online. It says, “Things may be complicated at my house, but hey, at least they’re unpredictable.” It resonated with me and continued from there. What I am talking about is my kids. Two of them were recently diagnosed with Cerebral Palsy. It sounds horrible when I see the words on paper, but not when I look at my sweet little babies, it’s actually not so bad. But it sure felt like it on diagnosis day.
My son’s diagnosis was expected. He had a severe brain bleed the day after they were born, 11 weeks early, resulting in a myriad of conditions that eventually arrived at CP. For the grade of bleed he had, he is doing remarkably well. No surprises. My daughter is the one that blindsided me. Her right leg turns in, and I only took her along to the neurologist to rule out CP. Ultimately it is not something that will prevent her from living a normal life, but it added to the laundry list of things to which we will need to adjust over time. The kids will grow and require various things like casts, braces, gait trainers, etc., and of course, more therapy. Though I love the doctors and professionals that make up our ‘team’, it is a constant flow of people in our lives. For someone who is used to being alone, it has been an adjustment for me. I am so very grateful for these caring people who help me and my children daily. But over time, I have come to realize that my time is slowly becoming everyone else’s - not only my children’s, but the whole team’s.
Fortunately CP is not an advancing condition. It is what it is, and can be improved for later years with early intervention/therapy. It is also not a cognitive impairing condition, thus, my kids are able to communicate and think well. We are very lucky. In the midst of feeling alternately overwhelmed and relieved, I came across a few blogs and sites that helped tremendously. A beautiful essay by Emily Perl Kingsley called ‘Welcome to Holland’ sums it up well. Now, Holland has always seemed like an interesting place to go. But I speak French. I like Brie and wine. Paris would almost always be my choice over other destinations. Ironically, I don’t like heavy perfume or cigarette smoke, and tulips happen to be my favorite flower. So what did we do? We got off the plane in Holland. And as we try to take in our new surroundings, we are tiptoeing oh so delicately through the tulips and realizing just how beautiful these large, bright and simple flowers really are.