You know that week when it’s all so much more than you can handle that you just shut down, I’m having that week. Participating in the trial is taking it’s toll on all of us; we’ve been in our new home for a month while construction is almost done; and it’s summer, the absolute hardest time of the year for our family.

With my thoughts in too much of a mess to sort, I have taken to asking Chloe a lot of questions. I worry about her with the high levels of crazy, so asking her questions seems like a good idea. Last weekend we saw the new movie Inside Out, so lately our discussions have been a lot more about emotions.

Twice this week Chloe has sat over her sisters ashen face and sang to her while she waits for her to resume breathing. I waited a little before I asked what emotion she felt driving, would it be fear, anger or sadness? No. It was hope. Chloe went on to tell me how she felt “hopeful that Claire will start breathing again and hopeful that doctors will make a medicine so she can talk”. She was so certain. She knew her sister would return soon and she is certain that treatment is coming. Sidenote: I am dreading the inevitable emotions when that doesn’t happen and trying to relish her innocent conviction.

I hadn’t realized it until she said it, but I had stopped hoping. I was just pushing because that’s all I felt like I had in me, putting one foot in front of the other. Today I am so thankful of the little voice that reminded me to hope. It’s so easy to forget among the medication logs, multiple appointments and constant readiness for seizures.

Today I’m enjoying everyone breathing and remembering that is what gave Chloe hope. I’m aware that my fatigue from travel is giving others hope tonight as they take comfort in knowing trials are happening and progress is being made. I’m hoping with Chloe that the doctors will come up with something because that would be rad. photo

Tooth fairy

photoIn the midst of our normal days there is this ever-present string of surprises that I still don’t know what to do with. Monday I relished watching Claire up on her horse. She worked very hard, she was able to do more than she had in a long time and I was reminded how dynamic and fluid life is, forever changing. Ironically, on the way home she had a not so small seizure as I drove on a narrow twisty road through the forest. Chloe pulled Claire’s arm to keep her body from hitting the window. I told her that I was looking for a place to pull over when my sweet little 5-year-old suggested that I look for a call box, because they always have space there. I don’t know how she knew it but I was glad that she did as I was mildly panicked about where to stop.

Later that night, as the girls went to bed, Chloe remembered that Claire’s chipped tooth needed to be but under her pillow for the tooth fairy. I was pretty convinced that only whole, first time out teeth would be paid for but Chloe was convinced otherwise. I honestly forgot about it until Chloe bounded out from school the next day. She was beaming with pride and made me promise to not tell Claire if she shared a secret with me. She then told me of the card she made for Claire, on behalf of the tooth fairy. When we got home she took $6 and some change, put it in carefully constructed pocket and hid it under Claire’s pillow. She ‘slyly’ reminded Claire that we forgot to look under her pillow in the morning and ran off to check. Chloe pretended to be surprised when she found the card and ran it out to her sister.

Part of me is so proud of Chloe for her thoughtfulness and then sad that she has to play both sides of every game for Claire. At this point it has been made clear that on this journey in Rettland what I need to do most is sit back and take notes. photo 2

Parenting in Rettland

photoWhen we were taken into Rettland a lot of things were explained to us. I learned the lingo of the medical specialties, the educational advocate and became fluent in speaking in grief. Over the last few months there has been a new education, in parenting. You see, Claire isn’t the only child we have with Rett syndrome, it is affecting Chloe on a global level as well and I am at a loss. A few days ago Chloe snuck Claire’s hand splints and nail polish into Claire’s bed as she was resting. Without my knowing, she got both splints on and painted all of Claire’s nails purple. Then Claire did what she does with her hands, she randomly moved them all over and destroyed her fancy nails in the process. I heard Chloe telling Claire no and getting frustrated, so I went in. Chloe was mad that her sister didn’t listen and also afraid that she would be in a great deal of trouble. The full makeover for Claire (perfume, glitter make up, the works) was to be a surprise for me. Claire wasn’t supposed to get the nail polish all over the sheets, but she did.

I wasn’t mad. I was heartbroken. Heartbroken that Claire wasn’t painting Chloe’s nails and that Chloe has to take the role of the older sibling. Yesterday when Claire vomited in the car after her seizure Chloe had to go into our physical therapist office to get help, all by herself. Our therapist was on the phone so Chloe came out with somebody she didn’t know but trusted to help. While I am proud of her for being brave and helpful, I am heartbroken that she was looking across the parking lot, wanting to go play on the playground and we couldn’t because of crisis. We make the most of it but her childhood isn’t typical like the brain she has. There is a level of trauma she is exposed to daily and I don’t know what to do other than take it minute by minute, answer her questions and show her my unconditional love.

Make a Wish

I assume a lot of 4 year olds forage for pennies to toss into a fountain and make wishes. Chloe does. She recently found a collection that she had forgotten about and begged to go to the mall and make wishes after school. I really didn’t want to fold laundry so I obliged. As we got closer to the mall she asked the profound question, “Why didn’t my last wish come true.” We had a discussion about how throwing a penny won’t really make anything happen but that hard work and good choices can get things to change. Then I asked about what the wish was that went unfulfilled.

photoIt was about Claire. Her wish was for the medicine to let her play with her sister. Claire’s been getting shots for a few weeks now and Chloe has noticed that she isn’t all better. Her wish didn’t come true. We talked about her lemonade stand and all of the other families out there running marathons and holding strollathons and working together to make a better medicine. We talked about how things in life just take a long time. As fast as research for Rett Syndrome is progressing, it’s a lifetime in Chloe’s eyes and not fast enough.

We went to the fountain and she through her pennies one at a time while closing her eyes. When she was done I asked if she wanted to share her wishes. First was to be a pirate and then to be a mermaid. There were a few more along those lines and I thought we were in the clear. Then she shared her last wish. “For Rett Syndrome to just go away, not like get a medicine that helps a little, just for it to like, go away and then Claire just wouldn’t have it.”