It sounds obvious when it’s said out loud. Growing up is hard and growing up in Rettland doesn’t make it easier. Much like the other difficult seasons, this one crept up on us. After all the hard work I did to grieve and accept I thought that we could just get on with the new normal. Not so.
The trouble is that Rett syndrome is complicated. It’s not a new fact but one that I continuously forget. While Claire’s breathing and seizures have stabilized and her walking has improved new challenges have cropped up. There is now an issue with her hip, she is requiring more support sitting and has grown enough that carrying her is a huge challenge.
This round seems hard because we’ve been caring for her for 9 years and not 2. We are worn and a little bit wiser. I know that somehow we will once again transition from survival mode to living and thriving, I’m just not sure how exactly that will happen. My brain is so fatigued it can’t conceive of the how but my faith and my heart know that somehow it will.
I look around and I see families that have gone before us. They have managed and without the benefit of a genetic diagnosis at age 2. Without early intervention and a history of the disorder, families have been living in Rettland for a long time and with great grace and dignity. I know we will make it, I know we will make. Yes, I am putting this out there just so I can read it over and over and not give up as the coming waves crash on us.
Last summer I attended a Rett syndrome conference and had the benefit of seeing Emily Pearl Kingsley speak. She has won Emmy awards as a writer for Sesame Street, authored “Welcome to Holland” and paved the road we walk on as the mother of a son with Down syndrome. Growing up in Rettland is hard, but it’s possible. If you have the time, I beg you to watch this video of the talk that Emily gave. It’s a great reminder of all the possibilities, not just the hard ones.