No, not the semi-autobiographical novel by James Frey, but the million little pieces, things about Hannah that B and I know inside and out because she is our girl, and she's been in our world for six years, and it's second nature to us to see when she's slouching and sneak behind her and scootch her tush back, or put some peanuts next to her while she's coloring if it's been awhile since she last ate, or encourage her to "get a good base of support" when she's washing her hands at the bathroom sink.
How do you teach someone about all of those things so they can take over this role for you for 7 hours a day, 5 days a week? How do you let go of the control you've had over managing this and trust that the new adults in Hannah's life will catch on quickly, or the learning curve won't be so steep that Hannah will be hurt physically, emotionally, socially or academically until everyone gets it? How do you try to calmly advocate for her when really you want to charge in like a mama bear, claws out, ready to swipe at anyone who suggests what they are offering is enough, when really it is a pittance of services to begin with, and what you're asking for is an increase to a somewhat acceptable but still not ideal amount?
This is the dance I've been doing since we sent the girls off to kindergarten. It's a big leap of faith for all parents, to give up the last vestiges of control over the bulk of your kid's day. Even in the best of situations, kids don't always get what they need at school and some degree of muddling through and figuring out is commonplace. And learning how to support a bright, motivated, "very aware of her disability and wanting to be like everyone else" kid when her body does not always allow her to participate like everyone else or be as independent as everyone else is a tall order.
Thankfully the teaching staff-Hannah's teacher, teaching assistant and individual assistant are all compassionate and want to do right by Hannah and by us. Also gratefully, we have an amazing special ed case worker who is on our side too. But it's a work in progress and while we're honing in on the first few hundred little pieces, there are still a pile more that need to be sorted through.
Wednesday, October 5, 2011
Sure, easy to say now that I'm not typing from the parents' lounge while I wait for Hannah to finish therapy so we can go have another hospital meal. But it really is amazing to me, and I think this is in large part because we went through this experience with small kids, how something that seemed so monumental before we went through it, and was pretty all-consuming while we were in it, is now a fading memory. I guess it just can't compete with the energy of our day-to-day existence, keeping up with all 3 kids who are growing and thriving and always on the move.
It's clear that the experience shaped all of us in many ways. Hannah most obviously and most dramatically, but also Isabelle and Sam, and even Brendan and I. I'll surely wax poetic on some of that another time. But for those who want to know the skinny on how Hannah is doing now, 4 months out, here are a few highlights:
When we left the hospital, Hannah was in her wheelchair 75-80% of the day. Now that we're home, it's about 25% of the time. She is gaining strength and endurance every day. Some days, she is on fire, like when we went to a friend's farm and she cruised through the bumpy, tractor-rutted roads and high grass with her walker. Other days, especially after a full day at school, she is more tired out and needs to ride more than walk. She can do things now that she could not do before, like crawl upstairs, get herself completely dressed on her own, take off her shoes and socks. She is working on standing independently, and can go about 5-10 very controlled seconds before losing her balance. We haven't been in the water much lately, but on her bike-she just got a bigger adaptive bike-she is able to do lots of rotations on her own. She's getting interested in trying her crutches again which is great, as we hadn't been doing much with them before surgery and decided not to push it too much until she was ready, and it seems like she's getting there.
Hannah is also developing some pretty awesome trunk control. Her tall kneels are looking great, and we go horseback riding once a week and she is riding by herself, holding the reigns, and staying up nice and tall in the saddle which is a huge improvement from when we rode last year. She and Isabelle both ride and are getting more of a horseback riding lesson kind of experience as opposed to a therapeutic riding experience which is really nice. Hannah gets some great benefits therapeutically but it is framed in a "super cool and fun activity" kind of way, and something Isabelle can do also which she loves. They-and Sam-are becoming barn rats and they idolize the "big girls" who come in to ride after them, some of whom have their own horses. So glad they like this sport but not psyched about the potential for serious cash expenditures!
So in many ways, Hannah is able to do things with her body that she could not do at all before surgery, nor did I think she ever would be able to do, because of her high tone. Now that the tone has been removed, she has great potential but the big piece that we have to keep working hard at is building up her strength, and that is taking some time. Again, she has come so far since we left NJ at the end of July and in many ways, is back to where she was before. But she does seem to fatigue more easily, and now that she's in full-day kindergarten and then doing therapy 3x/week after school, the times when she is at home seem to be times when she's totally pooped. More on what's going on at school in another post, but the good news is that she is, after a long and protracted battle, getting her needs met which is a huge relief.
So in a nutshell: no regrets AT ALL about doing SDR for Hannah and for us, the inpatient rehab piece after was a critical part of making this a good experience for our family, because it ensured she would get what she needed in that most intense post-surgery time period, and that when we did get her home, she was in a better place to be able to integrate back into our family routine. And...while we are seeing some really impressive gains, we are still seeing a lot of fatigue that mutes those gains sometimes, so I look forward to the times when she is having a good burst of energy and can really show us what she's capable of now. I also look forward to Hannah building up some of that endurance again, bit by bit. She sure is working hard at it, no doubt about that!