E. is not in the hospital or even close to needing to go to the hospital today. So there’s a positive trend. I hate to announce it, because things are so up and down and all of the sudden with her stomach issues. We will see. But today, she’s doing well.
On Thursday, after bath and stories, A. still didn’t seem tired, thanks to an epic nap earlier in the day. It was such a beautiful night, so I invited him outside to get some fresh air together. We usually do not go outside to play right before bedtime, but I used my favorite excuse, which is that it was a Special Occasion.
He jumped around for a while on the front lawn, and then settled right down in the grass in his pajamas. I laid next to him. Then he said this:
Look at the beautiful sky and admire it. Look at the beautiful trees. Look up at the clouds. You love this.
Yes, I did love it. What I loved most is that we were totally in that moment together, looking up at the sky. I needed that moment.
And after that gushing, unexpected gratitude, A. got going on some free association about a volcano, about how when a volcano does see humans than it will explode. I don’t really understand what that had to do with anything, but you know, I’m more of a linear thinker than the under five set.
That was right before our dessert picnic that we had upstairs in his bed. Eating brownies atop of clean sheets? You’d better believe it. As you probably know by now, I don’t think anything quite says trying-to-make-the-best-of-it like two of my favorite things: being outside and eating dessert.
All of this was after a tough neurosurgery appointment with E. The doctor told us that there is a 75-80 percent chance that she will need a spinal surgery in the next two years, but that we will monitor it for now. And about a 15 percent chance that she will need brain surgery to manage two cysts that are currently taking up space in her miraculous little brain. And that she has this thing called hypotonia (a very mild case) AKA weak muscles, which is part of the reason that she isn’t yet hitting those milestones that we are hoping for, like crawling and walking.
And then the doctor ended the appointment with, “But this is relatively good news, because at least with all of the bigger problems that she will face in her life, this isn’t so bad.”
Where do I even begin to start with that? So I’m not going to start, I’m just going to leave it there.
Later, towards the end of the night, I became a kind of a prisoner in A.’s room because he was feeling extra scared of monsters. Every time I tried to leave he got worked up. I didn’t want him to yell and wake his sister, so I just laid next to him for an hour until he fell asleep.
Alone, once he was finally down, I cried like you get paid by the tear. I am scared of monsters too, but the ones I fear are probably different than my son’s monsters. Mine are the kind of monsters where I live knowing that my daughter may very well continue to have a difficult life. Where I watch my baby girl suffer.
And, I’d like to just have a check in with the universe. A. just came down with hand freaking foot and mouth disease (that’s the technical name for it) AND strep. So we’ll be here all weekend, cranking the AC, basically in isolation until the sores disappear. Thank G-d for AC on this sweaty day. I’m looking for a little guidance on the rest of it.