I often think that our family has our own version of the first law of thermodynamics. The first law talks about the how the amount of energy in a closed system cannot be created or destroyed – basically if something gets more energy, than something else in the system must be losing energy.
For example, I have run three miles almost every day this summer. In exchange for this awesome triumphant achievement, Jeremy has lost all ability to walk up and down stairs. If Jeremy is really thrilled about something, it is inevitable that I will be down in the dumps.
In exchange for me giving Vince the awesome-est home haircut ever (not too shabby huh?),
we have sucked out all the good haircut karma out of the house and given Edda the worst haircut ever:
In a good mood, I can call it very French. In a bad mood, it is a little, as my little brother says, like a Romulan.
The haircut is fine – it’ll grow out, hair always does. But now that her hair is totally out of her eyes, I can see that when she is crying for hours, her eyes seem fixed and dilated and she seems more far away than she used to be. Now I can’t remember if her eyes have always been dilated and I’m just imagining these things. When we traveled that last week of August and Edda cried every night in other people’s houses, many of our hosts (who we have not seen in over a year) mentioned that either Edda seemed the same to them, or even better and more interactive which is totally not how I feel at all these days and I wonder if I myself am going crazy. We still haven’t been able to get a fix on her unhappiness which is making everyone stressed out (although as I write this, we are on the 2nd night in a row where I don’t hear any crying, maybe we’ve come out of this 3-month-long episode, keeping my fingers crossed).
We’ve finally got an appointment with her neurologist in mid-October – he recently switched jobs so he’s not taking appointments for 6 weeks while he settles into his new role at Children’s Hospital. I don’t want to see him, I don’t know if this is Edda’s brain just going crazy or what – I’m not sure he will know what to do, I think neurology is often just a shot in the dark with crazy-strong meds.
I have let go of so many “normal” things for Edda and I think that I am at peace with much of it, but the one thing I have held on to is that I knew that she was not suffering and generally a happy, carefree girl. Isn’t that what we all want for our children? I knew that this was not always the case with Rett girls, so I was grateful that we had a happy Edda, so the last three months, I feel like that last little remnant that I hold on to to keep my sanity is slipping away.
I’m quicker to be jealous of friends who can just drop kids off at pools, friends houses, etc and not worry about changing facilities, accessibility or uncontrollable crying. I know I’m lucky in many ways, and usually I can focus on the many things that I do have.