Changes

When I was in the training for the new WALK chairs in Charlotte recently, a chair of another WALK and I connected. We were sitting next to each other at dinner one night and talking about how hydro affects the lives of our loved ones and she asked me, "Would you change it?"

We're supposed to say no. We're supposed to say that we love every part of our kid and would change nothing. And you know what? Maybe there are parents out there that wouldn't, but for me, I say hell yes, I would change it in a heartbeat if I could. If I could have this same sweet amazing boy that we've got and take away the difficulties that hydrocephalus has brought and will bring to his life? I'd do it. Immediately.

Without hydrocephalus, he would probably be able to eat by mouth. We'd be off formula by now and working on learning how to use a spoon, fork, and sippy cup rather than focusing on how to swallow without flooding his lungs. He would more than likely be sitting on his own, maybe crawling, and probably be trying to keep up with his little sister who decided in basically one day that walking was the way to go. He wouldn't have already had three surgeries in his short 14 months and the likelihood of future brain surgeries (which is almost certain right now) would be slim to none. His biggest worries would be keeping up with a big brother who plays a little rough and a big sister who loves him so much she's constantly hugging and kissing him.

Would I change Nicholas's story so that it was without hydrocephalus? Without a doubt. The truth is, though, I don't focus on that. Because I can't. There's no cure for hydrocephalus and Nicholas was born with it. So we focus on making sure that hydrocephalus doesn't hold him back. That he will hopefully one day be able to safely eat by mouth. By getting him amazing providers who work with him so hard to get him to sit up on his own and one day crawl and hopefully walk. Who are teaching him how to use his mouth to say words. We watch intently for signs of shunt failure so we can get him help the second he needs it. We figure out the best way to store his medical supplies and teach care givers signs of shunt failure to look for and how to hook him up to an extension to feed. We learn the ins and outs of the medical world, and a whole new vocabulary. Revision, Mic-key tube, nissen fundoplication... We love him deeply and try to show him (and all of our children) just how loved he is.