update - living life again despite CCHS

As mentioned in my last update, Wyatt has successfully transitioned to a self-contained Total Communication Pre-K Exceptional Student Education classroom (ha, now that's a mouth full). It's been right about a year now and the biggest change I have to mention here applies to our whole family. Yes, Wyatt has made huge progress and I'll list his progress in another post. But what I really want to point out here is that life has gone back to normal for us! I want other families in similar situations to know that it does get easier with time!
To be honest, I myself always hated it when people told me "it'll get easier" because it just wasn't happening fast enough in my book. But it does get easier, just maybe not in the way you expect. When I say "easier", please don't misunderstand. It was a battle to get to where we are now and we still have quite a few battles ahead of us I'm sure. But the path we paved in the last 4 years is paying off now and it is to some degree progressing on its own. We started with a huge learning curve and having to fight the good fight completely on our own. I mean what options do you have when you're dealing with a disorder 99% of doctors haven't even heard of. It was exhausting, frustrating, down-right depressing at times, and we often couldn't see the light at the end of the tunnel. But we fought our way through it and we slowly but surely build a good "Team Wyatt". This sounds so corny but it's true. We hand picked his doctors and were not afraid to say no to one and find another if that person didn't fit our life and medical approach. Having that confidence as a parent to do so does take practice though. But once you find it, the medical side gets easier to deal with. We also learned to follow Wyatt's lead when it came to therapy. Would we have liked to start therapy since he was born and seen faster progress? Of course and we tried but he wasn't having any of it. We learned to accept him for who he is in this moment and trust that he'll do things in his own time. That is another way that life became easier. We stopped second guessing ourselves and comparing Wyatt to what a typical child his age would do. Instead of pushing him to do things he wasn't ready for, we learned to trust our own instincts and ironically, progression actually started happening faster. Now he is receptive to therapy and is making huge progress. Once these two pieces were established, our self-confidence and trust that progress will happen on Wyatt's terms, our whole family dynamics became balanced again. We were able to step out of the constant proactive medical mode into enjoying life as it happens right this moment. Medically of course, we always have to think and act proactively but we learned to stop worrying so much about what might go wrong next. He's far more stable now than ever before and we can, with accommodations and some planning, go on adventures and do family activities. Thanks to Wyatt being in school now, also something we never thought he'd be medically stable enough to do, all other family members can pursue their own hobbies and goals again. There will always be sudden medical needs that will throw a curve ball but I'm here to tell you, even with this kids who went into respiratory arrest 20+times a day as a baby and to this day still scares us like that a few times a week, life still goes on. Having a child with CCHS is not a prison sentence. Each case is different but life's possibilities are endless! Even a day at the beach with a trached child is possible!