This week has been stuffed to the brim with doctors appointments and occupational therapy appointments and ophthalmologist appointments. I’m exhausted. I’ve been driving all over creation, and on Tuesday I spent the entire day an hour away from home as I went to one appointment, and then waited six hours for my next appointment. My poor kid never wants to see his carseat again. Also? It is impossible to keep yourself and a baby occupied away from home for that long without shopping. So I spent a lot of money.
About three months ago we went to the ophthalmologist for the first time to check everything out. Preemies frequently have vision problems, so this appointment was just standard procedure. After the doctor looked at him, he was concerned that Atti would be blind. I’ve actually been so terrified about this that I couldn’t write about it. I could barely even speak the words out loud. We always knew that the worst his cerebral palsy would possibly be would still allow him to eventually function normally, but the thought of him not being able to see….when everything I do involves art…..I couldn’t even go there. For the last four months we’ve been holding our breath waiting to see if he would end up just fine – or be blind and crippled. No middle ground for us! EVER!
He was a little slow to smile, and I was sure that meant that he couldn’t see me to emulate it. He loves to stare at lights, and I was so scared that meant that he couldn’t see much else. I obsessed over his every reaction, and the day he started paying attention to the toys over his head I wept with relief.
Obviously being blind is not the end of the world. I’m sure I would have gotten on board quickly and learned how I could best help him. But the thought of not being able to share what I love most with him…not being able to read him a book and show him the illustrations…not being able to draw and color with him….I couldn’t see past the loss.
Bear felt the same way when we first got the cp diagosis. He was a college athlete. He’s dreamt about throwing the ball around with his boy. The thought of not being able to share that with him… I just can’t seem to find the words to explain it. The crushing disappointment. The guilt for feeling anything other than joy at your little marvel. The huge loss of potential you grieve while simultaneously rejoicing in what you have.
Most Tuesday’s I have a standing lunch date with Bear’s sister Mari and her mother in law Virginia. Virginia adores Atti and is totally a doting grandmother to him. I was discussing his development with her one day and how thrilled I was that he was grasping his toys with both hands; he was kicking both of his legs. How proud we were about every little thing he manages to accomplish because it shows him beating the odds every time. She commented that every parent should probably have that attitude about their children. That children come the way they come with their own talents and interests, and even if Atticus was completely healthy, he still might not want to toss the ball around with his dad. Maybe he’ll grow up to be an indoor kid like me and Bear would still not have that athletic ground to share with him. But now, he’ll rejoice in every thing he does instead of think less of him for what he doesn’t. Bear has done such a good job in letting go of his own expectations and celebrating Atti for who he is. I hope I can do as well.
The appointments on Tuesday all looked really good. There are a few exercises we need to do with Atti, he’s got some tightness in his muscles that we’ll need to work on, but so far everything is in the normal range for what you’d see from a preemie. So far we haven’t seen any manifestations of cp. We’re not out of the woods yet. We won’t be until he’s able to do all the normal physical skills. It just won’t show up until it does. The ophthalmologist said the same thing about his eyes. He’s seeing something, he’s not perfect, but he’s doing well and we’ll continue to monitor. But for now, there’s nothing to be concerned about and that’s the best news we could possibly get.