I am feeling the heavy of what's going on with Elise...I love reading about how awesome everyone's kids are doing, but it gets a little depressing when you read the 30-eleventh post on how somebody's kid with Down Syndrome is totally on grade level and is hanging with their typical peers...and all that jazz.
I am also feeling a lot of the sensory crazy with both Elise and her twinkie, Charlotte.
Last Tuesday, was Elise's Off Chemo anniversary. 9 years. On one hand, I feel like I just turned around...I remember everything...I can smell the antiseptic scent of the hospital cleaners and tape adhesive. On the other hand, I feel like we have lived 2 lifetimes since then. The time has gone quickly this year. But it has been such a hard year, I have felt every.single.second. of it. I don't understand how you can feel both the oppressive passage of time, and the speed with which it passes you you in the same instant, but somehow I absolutely can.
I know that much of the difficulty with Elise, is sensory-based. I didn't realize how much of that was so, until Charlotte started upping the ante.
I also know that Elise isn't just a child with Down Syndrome. She also has ADHD, a sensory processing disorder, and is still paying the piper cognitively for fighting and winning against cancer. Even if she had not had Down Syndrome, she would have been a difficult child to raise.
But lately, I have felt some wistfulness for an easy kid. Just one. I don't have one, in case you were wondering. I have 15 year old son who has charisma that oozes out of his ears, and is very intelligent, but has the attention span of a squirrel when it comes to school responsibilities. I have Elise. I have a 7 year old with dyslexia and a type A personality, that is beginning to feel the effects of dyslexia on the perfectly ordered world she craves. And I have a 4 year old who is beginning to make Elise's sensory issues look like child's play.
I would like to take today to say, out loud what I would like...
1) I would like to choose a church based on my family's desires, instead of which church has a special needs program that is safe and actually teaches Bible stories to Elise.
2) I would love to go to the grocery without anxiety over Elise throwing things on the floor that she doesn't want me to purchase...or clothes-lining a stranger child in an aisle...or opening a box of something I wasn't planning to purchase...or filling my cart with pretty boxes of things that she wouldn't eat in a million years that I have to replace on the shelves...or giving her earsplitting hoot because of the nice acoustics in the freezer aisle...or....well, you get the picture...
3) I wish I wasn't having to plan on holding her back to account for the extra years she gets to stay in school. I mean, she is thriving with her current teacher, and I am pleased to keep her back in a school that I cannot say enough good things about....but, when you have that kind of flex, and are not anticipating a huge personal maturation, it's kind of depressing...
4) I wish I could trust her not to take the 30 seconds left alone with her sister to "make her pay" for the emotional withdrawal that she can feel.
5) I wish this wasn't a true as it looks:
6) I wish she wasn't so tapped out when she gets home from school. She puts every single moment of effort she has into the school day. She literally has nothing left to give by the time she gets home. She spends every afternoon and weekend in "repair mode".
7) I wish she had a lovey or pet or something to help with her self-soothing, because she has sucked her thumb so hard over the last few weeks, she gave herself a blister on her thumb. And guess what she wants to do to make herself feel better over the booboo on her thumb? Yeah. It has been all kinds of lovely.
8) I wish she would accept that I have to brush her hair and teeth every day. I don't understand why it has to be the battle it is.
9) I would love it if she had more coordination/initiative to dress herself...we are still at the 3 year old level of having to have aid in getting stuff on and buttoned and tied and not backwards...and at 110 lbs, she isn't super easy to manipulate quickly. And there is nothing like trying to hurry and having her have a fit or losing her balance and crashing into you...there are a few muscles that I have discovered by catching *us* from falling...and Aleve is becoming more and more a staple in my days...at first I thought maybe I had fibromyalgia, thanks to the pain, lack of sleep, and general anxiety, and then I realized that I think she maybe has escalated me to shell shock (aka combat fatigue) and then been heavy enough that I am feeling the physical toll of helping a small adult with toddler-like self care.
10) I wish her desire to run could be rerouted. I mean, she still will break out of the car/house and streak off, and yet, I cannot get her to walk or run recreationally.
I know this isn't a roses and gumdrops post. And I am sorry for that. But for all her increases at school, it gets harder at home for a while...and based on home lately, I anticipate a great feedback session at the IEP meeting at the end of the month. I'll let you know. Also, I promise a 10 great things happening within the next week!