It is no secret that I was dragged into Rettland kicking and screaming. At first I tried to focus on Claire for Claire and pretended that she didn’t have Rett Syndrome. Then I tried to fix it with every therapy and activity that could possibly help. When that didn’t keep the seizures and breathing problems away I got kinda pissed off about it all. Eventually I just got tired and stopped and tried to just take a good inventory of where we were. I tried to understand the landscape of Rettland. It looked so bleak when we got here, so barren. Slowly, I followed Claire as she led me into a secret place inside Rettland, a place that I would never have found on my own. The journey to this place has been slow, the scenery gradually becoming more beautiful and lush. I woke up today and looked around and can actually say that I like it here. We have found the most incredible friends here and connected with people on a level that I never would have imagined. I have seen vulnerable little girls change people’s lives as they share their special light and insight. I am witnessing generosity on levels that continually blow my mind. I look down and I see a path, paved by those that have gone before us and further down I see researchers and doctors, working on improvements to make the journey easier. We aren’t alone in this, the barren landscape that greeted us wasn’t the final destination and if I hadn’t gone through it I would never seen all this wonderfulness. I will say it again, just so it doesn’t get lost, I really do actually like it here, at least on some days.
One of the things that continues to take my breath away in how varied the landscape is in Rettland. By that I mean that the children that are affected by Rett Syndrome very greatly. There are Leah and Avery who got diagnosed a bit later because they walked and didn’t show signs as early as Claire did. There is Amy who started off with heart problems and didn’t get that period of typical development because of that. Olive has a twin sister and that has made her story unique. Sorel fights against muscles that are too soft when Claire fights muscles that are too rigid. The challenges that are caused by Rett Syndrome affect each child uniquely. Each in their own way, they reach out, with their piercing eyes and and strong smiles and connect us all. There’s a level of human connection that these girls demand. It really is amazing to me how with such different stories, these girls and all of the others out there change and mold their world.
The last few days have been incredibly challenging. Claire had two days of seizures and on the third day a cold that kept her from breathing through her nose, something that is very important. It seems small, yet breathing through her mouth is an incredible challenge. It’s not the motor plan she is used to and having to do it differently is not as smooth as you would hope. With each day, each time she stopped breathing I got more and more tired, my heart sank further into my stomach. However, Jared and I were not alone as we wrestled with these hard days. Over on the side lines, ready to tag in was the amazing Valerie. We met Valerie at Kid Quest the place that Claire goes to for respit from us. Over the years Claire and Valerie have formed something very special and this year Valerie is Claire’s aid at school. Valerie has given us the gift of seeing somebody else love your child as if they were their own. When Claire had seizures Wednesday night while she was at Kid Quest Valerie held her as she rested afterward, wiped the hair from her face and didn’t bother me with it. She knew that Claire would be alright, she knew that I needed a break from it all. Yesterday at school, she gave Claire such respect as she struggled to figure out how to breathe through her mouth. When Claire’s friends came by they were welcomed and Claire got to hold her head high as she left for the day. If it weren’t for the insane levels of exhaustion it is likely that I never would have let somebody love her like this. I don’t always like being in Rettland but the view here is like nothing else that you’d see in this lifetime and today I am soaking that in.
We will kick off the month with what I think is one of the more profound voices of Rett Syndrome, Chloe, she speaks for her sister.
This is from a while back, Chloe understood her sister long before I did.
I like to say that I hate October but the truth of the matter is that I just hate Rett Syndrome, a lot. October is Rett Syndrome awareness month. It is also the month that we received our diagnosis and the month that we celebrate Claire’s birthday, which is more complicated than it sounds. I want to skip ahead to November. I love when we all focus on what we are Thankful for. I get to spread love around with the jewels I canned over the summer, eat pumpkin pie for breakfast and not stress about the IEP. If I could bury my head and plug my hears for the month of October I would…but I can’t. Recently Chloe has become her sisters advocate. It’s close but I might say she wants a cure more than I do, and that’s a lot. Chloe tells everyone how we need money to make a medicine so that all the girls with Rett Syndrome can talk. She talks often about our upcoming journey to Oakland and how she plans to change the world. As she goes on and on and on about this, Claire sits, grinning, so so proud of her sister. How can I not get behind that? So, awareness month, here we go! I am going to try to post a little bit each day, a face that is here in Rettland with us, something that makes it easier, something that makes it harder. The fact of the matter is that Rettland can be very isolating, so I will use my tiny voice here, to remind myself and everyone out there that we are not alone in this.