Cerebral Palsy is a funny thing. Although the official diagnosis is Kaitlyn's, I often feel like there should be some kind of secondary diagnosis that applies to me and Chris. While of course neither Chris nor I have CP, we suffer many of its side effects. For me the condition has undoubtedly caused absolute heartbreak. While I try to always focus on the positive, I admittedly have my moments of sadness. When your 4-year-old bursts into tears while driving through town on a beautiful spring day, and when asked why tells you through her tears that she "just wants to walk like the other kids", you too would be overcome with sadness.
However this post isn't about me. As an adult, I am lucky. I have the capacity to understand what CP is, I have the tools to cope with the sad moments, and I have the ability to get past those moments and focus on all of the wonderful things that make Kaitlyn so special. However, at four years old, Connor has so much to learn about Cerebral Palsy.
I really haven't spent too much time talking to Connor about all of this. He knows that Kaitlyn has Cerebral Palsy. He knows that she has trouble walking or running. He knows that she is his best friend, and that he loves her more than anything. To me, that seemed like enough.
Lately, it has become clear that Connor is much more aware of the toll that living with this condition takes on his sister...
Connor had a banner weekend. He played in his very first soccer game, he mastered riding his bike without training wheels, and he felt like a superhero when he whacked the pinata off the pole at our block party. Really, it was a banner weekend for him.
On Monday, he and I were having lunch together (my new absolute favorite time of the day). We were talking about how well he's doing riding his bike. He asked me if Kaitlyn would ever be able to ride her bike without training wheels. I said that she might, but she might not. He asked me if she can't ride like him because she has Cerebral Palsy. I said yes. I explained to him that because she has CP she can't walk like him, she can't run like him, she can't ride a bike like him, and she can't play soccer with him. I then told him that none of that matters, and that even though she does things differently, she can still do all of those things in her own way. I felt pretty good about my answer, and thought that since he turned away and was intently focused on his sandwich that the conversation may be done. Connor then turned to me, looked me right in the eye, and asked me a question that I didn't see coming. In a soft voice the tone of which was riddled with worry, he said...
"Mommy, will Kaitlyn have cerebral palsy forever?"
I answered him in the only way I knew how, and said "Yes.".
So now I'm adding Connor to the list of people clearly affected by Kaitlyn's condition. Next on my to-do list...figure out how to help Connor deal with all of this. Wish me luck.
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ReplyDeleteGood luck, Tara. This brought a tear to my eye. It's something I don't have to think about with Malayna as my only child, but it is hard on each of us in our own way. Big hugs!
ReplyDeleteEmma is our only child also, so I don't have to deal with this exactly. But, I do understand the coping stuff. It's very enlightening for me to hear that it still affects each CP family somewhat similarly. I just assumed it was those of us with the most hurt kids that felt these things. For example, both Kaitlyn and Malayna (and a bunch of other kiddos that I keep up with since the BBC days) actually walk independently, so I assumed that it was so much like having a typical child that it wouldn't impact the family that much. Honestly, I am glad to hear that it is still hard even though you are at the upper end of the spectrum, as it strangely validates my feelings. What I mean is I keep thinking if Emma was able to walk on her walker more...then no one would stare. Or if she talked more clearly, then no one would stare. But, I guess even if she walked with a limp people would still notice a difference and we would feel it. I don't think I made much sense here. Good luck with talking to Connor. He seems like an amazingly well-adjusted, bright, thoughtful 4-year-old. My hats off to you for raising such a compassionate child.
ReplyDeleteWow. I've just taken a moment to punch myself for complaining about being to broke to buy a book.
ReplyDeleteAll I can say is wow.
I'm going to start working with a guy on a design project who has CP and have spent the last 2 hours trying to educate myself about it. Medically, yes, I think I'm starting to understand it.
But reading this has made me realize the emotional toll it take on people.