It must be the deeper levels of fatigue setting in but lately I have been struck by a series of moments rather strongly. I will be in the middle of something when all of the sudden I wake up and the reality of it smacks me in the face. Last weekend it was just after Chloe's first hair cut. Typically Saturdays she and Jared spend time together while Claire is at Kid Quest and I get to vacuum and fold laundry in the peace of an empty home. Since the hair cut was a big deal, I tagged along with them. Since it was unbelieveably lovely outside, we decided to walk down the street and stroll along the cliffs.
It was amazing. It was so effortless and easy. Even with Chloe the crazy three year old, it seemed effortless. I commented to Jared that this must be what life is like for the many people that we see out and about. Even with hard stuff, this 'normal' life with just the three of us felt pretty great. At the same time, it was a harsh reminder of just how much work Claire takes, even on the easy days. I really struggled with the guilt of enjoying our family so much without Claire there. To make it even harder, Claire hasn't been having many good days. It has been a series of hiding in corner while she has her dystonic episodes or seizures. I eventually get tired of this and then try to do more stuff at home to which she responds with hatred toward me as she would clearly rather not be out in the world. A week of this drove me to the ragged edge of sanity yesterday. I've been trying to hold it together. I knew that my break was coming, I just had to make it to Wednesday night then I could pack my bags and go get on a plane. I have been trying to make peace that the fact is, this is our normal but lately I just haven't been able to get to that place. I hate that her brain freaks out from good stuff. I understand seizures from flashing lights or even extreme illness, but the use of her hand? Really? This is cruel! In the last week she has been working on using her non-dominant hand purposefully. It has been a solid three years since this has happened, it's a big deal! But I have to try not to get excited because if I praise her for her hard work she works harder and then her brain explodes and her body twitches and she stops breathing and I just won't except that this is going to be our normal, i hate it. In an effort to make sense of it, maybe see something that I was missing so that we could fix it and stop this, we went to see our lovely neurologist today. That was when I was hit yet again, this time with a memory. We typically see our doctor at a different clinic that is closer to where we live but to get in sooner, we went to the location at the hospital. As we walked down the hall to our room I for some reason looked into one of the open doors. It was the room that we sat in for our "follow up" to the phone call we got, the one that they told us that the test for Rett Syndrome came back positive. As I pushed Claire down the hall, Chloe hanging on my shirt, I burst into tears. I had forgotten about that day. About the horrible feeling as the doctors pretty much told us nothing that was helpful or encouraging. Then just as quickly as it hit me I was over it. Chloe had climbed up the table and wanted to jump off it.
We settled on jumping off the step instead and made a balloon out of a glove, that never gets old. Of course, Claire was spectacular, no episodes, stress or seizures. Her doctor and I formulated our plan of what we will do if and when things get worse. A plan I hope never to use but am glad to have. On the way home, Claire was able to get her sisters purse around her arm all by herself and it didn't even give her a seizure. So I guess it was just a normal day and I guess I can deal with normal I like this, it isn't that bad? Right? I'm just going to keep saying that and I know that at some point I will believe it, at least for awhile.
Chloe is just about to fall asleep and I am about to pack my bag. Tomorrow I will get to take an airplane, far, far, away (New Orleans) where everyone is normal, well as at least to me.