Today it will get up to 86 degrees Fahrenheit. That’s hot when you combine it with high humidity. We had about one week of lovely Spring between frigid cold Winter and Summer’s cauldron. These extremes are certainly reflective of my mood as well. We are still dealing with our Registry of Motor Vehicles in order to ensure not getting heavily taxed on the vehicle we had to buy to accommodate Ellie’s wheelchair. I wrote about this here. Ok – that was 11 months ago and the saga continues.
On top of all of this, Ellie is not sleeping much, er, at all and I am exhausted. I stress over the not sleeping. I go to bed each night cringing at the thought of having to get up and be coherent at 3am until 5am or 6am or 7am. During that time I have to lift Ellie up. She will want to sit on my lap, which for some reason at that hour really presses on my kidneys and hurts. Then she will want to play because she is so glad to see me. That part is really cute though I tell her, “Ellie, it’s not play time! It’s sleepy time. See how dark it is.”
Then I will try to figure out why she woke up which is really hard because she is non verbal and has her own 4 year old night time agenda. So I start by asking her, “Ellie do you have an aowie?” If she does (this is my translation of her actions from doing this countless times) her answer will be to throw her arms out to the side, swing her head back and forth, smile and squeal! It’s a massive, “Yes, I do! You got it right Mama! Nice Job!” Then I will ask her, “Ellie, where is your aowie?”
Sometimes she will tell me the specific place by putting her hands on it and then placing my hand on it – she does this when it’s her feet/braces/ or casts that I can do nothing about. If it is her AFO’s I will remove them. If she has just had a new cast I will get her Motrin.
Sometimes she will put her hand on the side of her mouth – her sign for yes. When this is the response I say, “How about mama kiss it better?” To this she smiles and gives me a gigantic nuzzle and then holds her face very still so I can kiss her cheek. This is the cutest thing ever even at 4am.
Often, however, her response to the do you have an aowie question is to put her hand just above her forehead where that bad shunt is. She does that a lot and it freaks me out. I stay calm and I say, “Do you have an aowie in your head?” And she will either squeal and do her yes or nuzzle me. Either way I kiss her on her head and then worry about this for the next week. She may be in pain. God knows what it feels like to have shunts. We did read that going from lying to sitting could be quite painful in a head rush sort of way. I hope one day she can tell me
If she looks ok I go on to the next part of the discovery process. Next I may ask her if she is not getting sleepy if she is hungry. Before when we would bring her down stairs when she was hungry she would always say yes to this, just to go downstairs. But now, when she is up at night we don’t reward her by bringing her downstairs so she can play with her toys. Even though this means running up and down stairs for food and pain meds. I also check if she needs a diaper change.
If it is hunger or a new diaper that is needed, once she gets food or changed she settles in somewhat quickly and will snuggle in for a sleep. More often then not however, she just wants me or is in pain. She wants to be in my lap. Even if I won’t play with her or sing to her, she just wants me there. Eventually she gets tired of sitting and will want to lie down. She will snuggle in and clutch a handful of my pajama top and hang on to it for dear life. Then she will proceed to toss and turn. Sometimes I can sneak out of her room and she will actually sleep better. But some nights when she has some unknown pain she will sleep lightly and not want me to leave at all. I don’t blame her. She has bad reflux and can’t sit up on her own. I think it must be scary to be alone, in the dark, and having trouble clearing secretions – so of course I stay.
But gosh I am tired and it makes the rest of the things you have to do all day seem more difficult. I don’t usually write about how hard this has all been. But I have to say, if you know a parent of a kid with brain damage, assume they don’t sleep very well, and if you are in the position to help them, then do help them. Offer to watch their child for an hour or two so they can go take a nap!