So, I'm having a bit of a hard time swallowing the fact that Connor won't be able to play. Connor was going to be my NY Giant. He's big, fast, strong and has a wicked temper. Perfect for football. Except for the fact that a head injury can be fatal. So what does this ellliimate? Most sports. Connor's neurologist told us that baseball, soccer, hockey, football and gymnastics are all out. Well, what can he do? He WANTS to be like his brother, but since he can't we need to find something else. That something else will be golf. This makes his grandpa quite happy. As a matter of fact my dad, who Connor and the rest of the grandkids call Pop, called me to tell me he got his Golf Magazine in the mail and there was a feature about a Pro Golfer named JB Holmes who has Chiari and had the decompression surgery. Well slap my ass and call me Sally.. Here is a man who suffers from the same thing, went through the surgery, had a bad go of it and is still out there trying. What a good example.
Connor is only two, we may find that he doesn't like golf, or any sports for that matter as he gets older. But the point is, he has an option. He may not be like every other kid. He may never be like everyone else, but he doesn't have to be. That's what I adore about this kid. He doesn't have to be anyone but Connor. This kid makes his own path.
I just saw your blog link off of an ICA posting. I read your entries, and wow. I'm transported back to March 23, 2011. My 4 yr old son had a seizure. Unexplained, sent home from the ER. But landed back in the hospital for 10 days with unexplained increased ICP, then we started tracking a papilledema, followed by posterior fossa decompression surgery Aug 2011 for Chiari I and syringomyelia. Here's my long story totally shortened. Prefaced by saying that I have come to believe that everyone's Chiari journey is unique. Regardless of what you are told or what you read or what anyone tells you, your job as the parent is to listen, evaluate, and do the best with it you can. Because there are NO magic answers. So, that being said...my son today plays hockey and baseball and rides a bike and swims and plays Xbox Kinect...Prior to his decompression, I had read there would be no sports. And while he played t-ball and was in hockey training classes, he was struggling physically so I assumed that to be true. We met with our wonderful neurosurgeon, who's opinion is that, when the surgery is done correctly and successfully, there is no reason he shouldn't recover completely and be able to do whatever he wants to do. And in fact, 3 months post-decompression he started slowly with his skating coach, who said he sated like a totally new kid. And within 1 year post-decompression had quickly moved up 3 levels in hockey so quickly that I never could have imagined. Now, I won't tell you that every time he falls down I don't shudder inside. But then, that's the same as when, 2 years post-seizure, I don't go on ultra-high alert at every fever or vomiting episode. Also, here's where all my caveats come in--evaluate with your doctor, with your research, with your heart/mind, etc. I don't know Connor's situation compared to my son's situation, and I'm certainly not a neurosurgeon with experience. And, I am a firm believer in NOT doctor hopping until you find the answer you want. But my (unsolicited) advice is to not blindly take a neurologists opinion about what is and isn't possible. There's much research to be done. There's much mis-information out there. And there's lots more practicing neurologists and neurosurgeons than really have proper experience with Chiari, let alone pediatric Chiari. Good luck to you all!
ReplyDeleteThank you so much. How amazing that your son can do all of these things. I hope Connor can do the same and I guess time will tell. -Jodi
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