Dealing with rett syndrome is the equivalent of constantly being on a roller coaster - I HATE roller coasters! I like things to be planned to the last detail, I like to know exactly what I'm in for. With Rett Syndrome there's just no idea what will happen next. Each morning I wake up to Annie's irregular breathing in the monitor and I wonder what's in store today? Is she going to be able to make it to school? If so am I going to get called to pick her up? If I do how am I going to pick her up when I have to get Gracie from her school? If she makes it through school is she going to have a melt down after school? It's a minute by minute guessing game. Annie could have the best morning and then have an afternoon full of screaming fits for reasons that I can't figure out. Or she could have the worst morning full of hours of moaning in pain (again, no idea where the pain is coming from), breath holding and tremmoring and then have an evening full of giggles and smiles. One day she seems so strong that she could actually, possibly take steps on her own, the next day she's so weak her legs are like jello and she can bearly hold any weight. It's a guessing game except there's no reason to guess because even if you're right just wait a few minutes and everything will change. I want to get off this ride but its useless, there's no stop button, not even a pause to catch my thoughts and regroup, its constant 24 hours a day and I DO mean 24 hours. The evening is full of questions as well, is she going to fall asleep before 11pm? If she does is she going to wake up at midnight? If she does what do we do? Give her an extra dose of meds or see if she can fall asleep on her own? What if she doesn't fall back to sleep? Should we turn off her tube feeding? Then she won't eat the next day and her weight is so fragile as it is but if we keep it on will it keep her up? What if she falls asleep in the morning at 4am or after do we send her to school? and so on and so on, the endless list of questions without answers and the constant wondering if I'm doing this whole thing right? Where's the book with all the answers? Why can't this be just a little bit more predictable? With every question and every outcome I become more and more unsure of myself, because of course with every decision there is room for doubt and there are always consequences.
One such example is constant in our lives, the issue with Annie's sleep (or lack there of) and her weight (which despite the tube feeding is still a shockingly low 29 pounds). When Annie wakes up in the middle of the night we typically turn off the tube feeding, somehow it seems to help but only sometimes and we're not sure why. It's one of those things on the list that you try just to attempt to get a few more precious moments of sleep. Soooo, if turning off the feeds helps then keep doing it right? Nope, now we need to play "catch up" to regain the calories we lost in the feed - to compound that issue if Annie doesn't eat at night, for whatever reason, she's not hungry the next day - pretty tough to make up those calories when the girls not hungry. Bolus her durring the day? Good thought but a bolus sends Annie screaming for hours - not sure why, no one can figure that out. What about keep the tube feeding going even if it means lack of sleep? Think about having a new born baby awake a few times a night to eat for the first couple months of life. How tired a new mom is the rest of the day - take that and multiply it times 5 years - that's how long Annie's had sleep trouble - we're TIRED! The whole situation is a catch 22.
So today in the mail we got Annie's scoliosis report. We were thrilled earlier this week when we heard that her scoliosis is now at an undetectible curve!!! YES!! Score one for Annie! Take THAT Rett Syndrome!! We were at an 8 degree curve 2 years ago, then down to a 6 last year and now undetectible!! Awesome right?? Well, we thought so, until we got the rest of the story. Annie's bones are continuing to thin. You know the osteopenia you see in older women? When they fall and break their hip? Well, my 5 year old has that. The report says "diffuse osteopenia consistent with a chronic debilitated state" Rett Syndrome just tipped the scales again. And here comes the guilt - do I get her up enough? Is she getting enough therapy? Are they making her stand and walk at school? How do I stop her bones from thinning if she's been on bone suplements for 4 years now? The conclusion is that there is just no winning the battle. Oh, don't get me wrong, I will continue to do everything humanly possible for my Annie, I will give everything in me until I take my last breath. But, there's just no sense in fighting because it's not my battle and if it's not my battle how can I ever win? This is God's battle, and all I can do is make my requests. God's in control of the situation, in control of all that goes on inside Annie's body and my job is not to fight but to listen. Listen closely to that still small voice that says "She's mine, I've got her". Its so easy to get caught up in all of the chaos, all of the questions and the constant worry and quilt. Today I just need to remind myself to sit down, calm down, and listen. God will direct our next step, He always does, without fail, as long as we let Him.
.....‘Do not be afraid or discouraged because of this vast army. For the battle is not yours, but God’s. 2 Chronicals 20:15