Ever get that butterflies in your stomach feeling when things get going? Lately I have been learning that in Rettland, there seems to be a lot of that. Claire got sick the morning of our Make-A-Wish and after vomiting most of the morning I almost canceled the trip. She slept and woke up great and we had an amazing time. She vomits most holidays, we finally started bringing multiple changes of clothes everywhere we go around that time of year. It’s a thing that I’ve known, Claire gets overwhelmed or excited and she’s likely to lose a meal.
Yesterday, when I was least expecting it, it was my turn. After an invigorating morning of finalizing the website and working on details for the foundation, out of nowhere I felt horrible. It felt like something was squeezing my head and my brain was about to explode out my eyes and down my spine. I felt uneasy or as my friend says ‘like having cats fighting in my belly’. There was nothing negative to stress me out, it was all so good, too good. I rested and eventually pulled myself out of bed to get Claire from school.
As I put her in the car I asked her to bear with me as I wasn’t feeling good. I explained how my stomach and my head hurt and she looked at me with her piercing eyes, as if to say ‘if I had a nickel for every time.’ My heart sank. This felt horrible and I suspect it is much like Claire feels when exciting things happen, but she can’t whine about it like I can. We went to physical therapy and I relaxed as I saw her literally make strides that I never expected to see. Instead of thinking about how amazing it was I just enjoyed it and breathed in and out. That’s something that she can’t do, at least not very easily.
The whole thing begs the question, can we handle the positive excitement of a possible treatment? It’s likely that our brains might explode and we might both puke. I’m sure that we will figure our way through it. I am just so thankful that she let me in, that I have just the slightest clue at what that feels like for her to face such exciting things. It rejuvenated my fight, that is exactly why we have to go forward and go to Boston and do what we can because that brain exploding, puking feeling, it isn’t fun.
5 thoughts on “A glimpse into her world”
Here’s to the fight! Puke or not.
I’ll take headaches and puke over Rett syndrome any day!! Bring on a cure!!
I just hate that Claire has to face both. So ready for that cure, or whatever they come up with.
this was a great perspective…I love how you knew she was empathizing with you…
Claire’s eyes truly are the window to her soul – you are so perceptive to be able to read her the way you do! Hugs!!