Cure for the blues

When Hannah was really small and we did not yet have a CP diagnosis, but knew about the brain injury and saw her motor delays getting more and more significant, I would often lie in bed at night and cry, wondering what was in store for her and for us, feeling so sad and angry and filled with grief.  Then the next day would come and I would be too busy living life with Hannah (and Isabelle) to feel sad. 

This is what I always come back to, when I get down and out about raising a child with a disability.  The best way to feel better, when I get sad about Hannah's CP, is to spend time with Hannah.  Because she is not a sad child.  She is full of life, and busy living life.  She is motivated, happy, secure, fun, and kooky.  She is having a grand old time and if you're right there with her in that place, there isn't a whole lot of room to feel sad.

Botax benies

Hannah had her latest round of botax at the end of July.  It seems to take about 2-3 weeks to hit its full potential with her and then she often gets weak and unmotivated for a little bit while she adjusts to the new way her body feels with the reduced spasticity.  And then she's starts the steady climb up to the sweet spot where she's feeling loose and strong and energized to do things she would not be as inclined to try otherwise.

We had a rough go this round when Hannah hit her "low" and we think she might also have hit a growth spurt right around the same time.  She did not want to move her body much at all and when she gets like that, it's so hard not to feel defeated by her limitations.  So when she started to get her energy back, it was like the sun finally came out after a long stretch of rain.  She's been on fire! And suddenly I feel like the world is her oyster again, and there's no limit to what she will do. (well, there are limits, but still...)

It continues to fascinate and amaze me, how these site-specific botax injections into the muscles in her legs can totally change the way Hannah's whole body moves and feels.  I'm projecting on the feeling part because obviously I have NO IDEA how it feels for her, but from what I can see in how she moves, what she can do with her body, and her behavior, I'm guessing it's a pretty significant improvement.  There are so many little things she can do post-botax, like shifting her feet into a better position when tailor-sitting, or sustaining a long-sit for a longer period of time, or opening her legs wide to make "snow angels" when we do our stretches at night.

I'm assuming that if we do SDR, she will see similar gains and the best part is, they will be sustained and will not wear off after a few months.  The other benefit I think she'll see, which has me pretty excited about SDR, is the improved energy efficiency she will gain so she'll have better endurance to move her body around.  Currently, Hannah weighs only about 25 lbs and she'll be 5 in a few weeks and this is because she uses so much energy to do the things that other people do with little to no effort.  Even if she's super motivated to walk, she sometimes peters out before she's really ready to stop, and this is frustrating for her and for us.  It would be incredible if she could keep increasing her endurance and not get defeated by her lack of it.

However, one thing I've noticed more with this latest round is trunk weakness: Hannah has been complaining more about getting tired when sitting than I recall her saying in the past.  I'm not sure if this is because of the botax or if something else is going on but it does worry me a bit when we think about SDR. 

We will be having another SDR consult with a different surgeon/hospital in October so this will definitely be on my list of things to ask about.  In the meantime, we're going to ride this post-botax wave for all its worth!

My Belle

I want to give a shout out to Isabelle because lately I've been feeling like she gets the raw end of the deal.  She's probably lowest on the pecking order of my divided attention to the 3 kids, because she doesn't have a disability and because she is not the baby. 

It's not fair and she handles it gracefully for the most part, but lately she's been giving a few indications that she realizes what's going on and isn't always psyched about it.

It's true that this scenario probably plays out in all families with more than one kid, with kids feeling short-shrifted and parents feeling guilt-laden.  But when you have a kid with special needs it seems accentuated that much more (then again, everything is accentuated when you have a kid with special needs!) The impact this has on your family reverberates through every member.

As of late, Isabelle's become pretty sassy with us.  She's talking back a lot, being kind of fresh, not listening, occasionally getting physical with Hannah when she gets frustrated with her.  None of it is horrible and most of it is typical but I don't want to dismiss it because I do think she's overdue for a little TLC.

I've been trying to find ways to spend more time with Isabelle but also realize that even if I can't schedule this well-thought-out, elaborate "Mommy and Isabelle" adventure, just giving her a bit more attention during a regular day, taking advantage of times when it's just her and I (fleeting though they might be), giving her a chance to try a new skill can all go a long way, I hope, toward repairing some of her feeling of neglect.  OK, neglect is probably too harsh a word but you get my drift...

And yet no matter how hard I try, things will always happen to undermine my best efforts.  In the past few weeks there have been a number of occasions when I'm out with all 3 kids, or just Isabelle and Hannah, and someone makes a comment about how cute Hannah is, or how they love her glasses or her hair or give her props for how well she's walking in her walker, etc etc.  Isabelle is always standing right there and she's a smart kid whose ears work pretty well so I cringe when these moments happen and I want to kick the people who make those comments in the shin.   "Thanks dude! There will be payback for that comment later!"  I'm sure it's no coincidence that lately Isabelle is very into making sure everything that gets doled out around here (drinks, snacks, special treats) is exactly the same between her and Hannah, and she often accuses me of shorting her.

And the whole "people making comments about Hannah" thing raises so many mixed emotions for me for so many reasons.  First, I'm annoyed that people are silly enough to say something to one kid and ignore the other that's standing right there.  Look at her face-would you ignore this lovely smile?!  Also, while I appreciate that people think Hannah's cute (she is!) I often wish no one said anything at all.  Are they overcompensating for their discomfort with her disability by commenting on her appearance? Trying to show how "disability-PC" they are? If she wasn't in a walker and wearing braces, would they fall all over themselves to praise her?  I should give people a break and not get riled up about it but we've had a few experiences of people giving Hannah extra attention which have been downright strange (not in a creepy-strange way but in a "that's kind of bizarre that you'd do that" way).

Anyway...all of this is added to my feeling that Miss Belle deserves a little something of her own.  As the girls get older and more comfortable being away from us and each other, I think it will be more and more important that they each have something that's their own.  It will be hard to see them leave one another behind for other pursuits but I know they'll always have each other.  And they each need their moment to shine.