Thursday, December 24, 2009

Labels and Wishes

Christmas cheer will come tomorrow, but for today, I have too much to spill. First, I'm working on Cmas Eve, and second, I just have a LOT on my mind.

I've been struggling a ton with the various labels attached to my Bean . . . hypotonic, developmentally delayed, not "typically" developing, special needs. Really? Is she special needs? That's the one I struggle with the most . . . I mean, yes, she has special needs right now - she gets PT twice a week and OT once, but I don't think of her as a "special needs" child. She's just my Bean. My Sammie B. Sweet Sweet Samantha.

When Sam first got approved for regional center services, and we started all of these therapies, I felt like immediately B embraced the 'special needs' label and ran with it. He was thinking of up ideas for a non-profit (one we still hope to form) to help other special needs kids get therapy equipment and resources. Everytime he brought it up, inside, my stomach did a flip. I hated that it was so easy for him to just accept it, hated myself for not being able to, and hated the words he used "special needs." I remember him telling me he met with a politician from our city (as part of a volunteer project he does) and that they were talking about the lack of playgrounds for special needs kids, and he said "I told her that we have a special needs child . . . " and inside, I thought "no we don't" and my gut fluttered again.

But lately, I understand more and more . . . he needed those things to throw his energy into because it was easier to dream and plan for some not-yet-formed non-profit or for playground renovation than to worry about what the future would hold for the little Bean that we love and adore. But lately, as we get further and further into this process with Sammie B, he's struggling more and more . . . His struggle of course is not blog material - it is his story to tell, not mine. [Though I have to say that even B's "struggle" is somehow more sane than mine. He doesn't allow himself to fall into despair the way I do.] Anyway, by seeing him struggle, I feel like I'm backtracking. That suddenly, the fear and the worry that I'd managed to (sort of) overcome is trickling back in, in more powerful ways than ever before. And again, I find myself consumed with questions and worry about what is to come for my sweet sweet Bean.

The doctors continue to tell us that "she'll be fine." "Lots of kids with low tone go through this and are fine, even ones that don't receive the therapy she's receiving." But as the milestones fall further and further behind us, the less comforting these words are. We are "need to know" not "wait and see" people and this is harder than anything EVER. So, we decided we will just be more adamant that the doctors look for answers. They've always said there's no reason for more tests b/c its just "low tone," but I think we now know that we NEED them to try to rule out other things that could be causing the low tone. Then, once we've exhausted those tests living with the "its just low tone" would be easier. Living in limbo with wonder is hard. So, we made another neurologist appointment in the next month, even though the neurologist said she didn't need to see us again until March. This appointment is for us. WE NEED IT.

We have also known for awhile that low tone kids often have speech issues. (Tone affects oral muscles as well). We'd hoped we'd escape that, but at 14 months (adjusted age) and with only two words (though tons of babbling and gesturing), we are beginning to realize we likely won't. So, that's on the list to talk to our doctors about. So, suddenly we find ourselves faced with the possibility of adding ANOTHER weekly appointment. Which stinks.

One thing I've said (and B has said too) over and over is that this is Sam's story. We wouldn't change it for the world. We wouldn't change her for the world. She's our Bean. But lately, B and I both are starting to realize that its OKAY to admit that if we could (which we can't) we'd take away her struggle. That doesn't discount the incredible little person she is or how much we adore her. I hope that someday I DO look back at all of this and realize that it was just a struggle that made her (and us) who we are, but for now, struggling sucks. (and fuck whoever said there's growth through struggle. . . right now, we are just sort of tired of struggling!). Admitting that we'd take away her struggle if we could doesn't mean we want to change her. Of course we don't.

I've actually found some other blogs of mothers of hypotonic children, and that helps A TON. One mother said that she watched as her hypotonic child learned to crawl and realized that unlike her typical children (who found the crawling position one day, rocked for a few days, then took off), it happened in many many more small steps for her hypotonic child, and that she had to learn to appreciate each little step as a milestone. We are trying to. Really. And, we do appreciate the progress . . . more than words can express (and there IS progress, however slow it feels at times) but somedays we just wish it were easier. For her, and for us. I want with every fiber of my being for her to be able to explore her world through movement. For her to see something across the room (which she would now sort of gesture toward to indicate she wants) and be able to just take off and get it. I can just imagine the little gleeful smile that would spread across her face as she went for it.

I've resorted to begging my "higher power" (which many who know me know I'm generally ambivalent about) for SOMETHING. Give us something to make this easier.

And, while I'm not much of a praying girl, those who know me also know, I am a wishing girl. An eyelash? Yay - a wish! 11:11? A wish! TWO RED CARS IN A ROW (I made this one up)? That's a wish too! As a wishing girl, I (of course) WON'T dislcose my wishes, but I'll just say that lately, I jump at every chance to make a wish, and to make a wish for my Bean. (Oh, and I'm pretty sure that wishing on her eyelashes is even better luck!). But the wishes aren't coming true as fast as I would like, and with that comes more struggle, more panic, more fear.

I know that the labels don't matter. She's just our Samantha, and she brings more depth and meaning and happiness to our lives than we ever knew possible. She may not have found all of her words yet, but her "mama" is the sweetest sound ever, and her personality POURS out of her. Things may not come easy to her (at least not now, maybe later) but that will make them oh so much sweeter when they come.

Sammie B, I adore you. My every wish is yours.

1 comment:

Elisa said...

It's amazing how much power labels have, isn't it? You can have an illness and know how to live with it. But when all of a sudden a doctor gives it a name... poof! It's so much WORSE and more DIRE than before. Even simple things... I know what I look like and how much I weigh. But when a coworker called me fat earlier this season... I freaked. I frantically tried to lose weight. I didn't change even one iota physically as a result of his label. But the word had such power over me. Ridiculous. I know some labels are necessary for treatment... but your Bean is still your Bean, no matter what the label.

I wish for you guys too. And yes, fuck whoever said struggle breeds growth and is good for you! I've been cursing that bastard for years! I wish and pray that your Bean will take off running and you'll be beside yourself with worry that she's gonna knock everything in the house over (I know, weird wish, right?) But I have to say that I am SOOOOO incredibly attached to your gorgeous bean and so amazingling enchanted with her. Her personally oozes out of this blog and just reading your posts and looking at her pictures is enough to make me swoon over her. I do not get that way over my other girlfriend's brand new baby. Or any other friend's kid. Your Bean may not be as far along the motor continuum as other kids her age, but she is light years ahead in spirit and character. I am head over heels in love with her and her story. Maybe that's her life calling - to inspire others. Not because of her weaknesses, but because of her amazing strengths.

So while you're wishing on her eyelashes for her to walk, run and give dissertations, other moms are wishing on their kids' eyelashes for them to grow up to be someone amazing. See how that works? You already have that.

Love you guys so much and am wishing you a magical holiday!

Love, adoration and eternal joy,
Elisa