Wednesday, July 13, 2011

Sometimes, Even in the Midst of Magic, Life Stings

Sometimes, life has a way of piling up and slapping you around a bit. As much as I truly, truly think I've found my place of peace and acceptance, there are always little reminders that things are harder for my girl, and well, sometimes, those reminders feel like punches in the gut.

Yesterday, I took Sammie B to school. (Don't worry! I didn't lift her and I sat on a couch with my feet up while she was in her class! Her teachers are all super-fab and no one would let me lift!). I've really, really missed my Tuesdays with my girl these last few weeks (remember, I took a big pay cut to have these Tuesdays with her) and well, I JUST NEEDED a Tuesday with her, so we took "modified" bed rest on the road (and, I am allowed "light activity!"). They were doing water play in the morning, and Sammie B stood for 25 minutes playing at the water table with her friends - magic.

Then, they put her in the gait trainer. They have a kidwalk gait trainer there, and some days, she walks in it, other days, she doesn't want to and just rests her weight on the pelvic support. Well, yesterday was a "doesn't want to" kind of day, and for whatever reason, I felt discouraged. She's doing SO well with assisted walking at home (with us holding her trunk) and I just feel like a gait trainer would give her SUCH independence, and I want that for her so badly, so when she wants nothing to do with it, it stings a bit. And, somehow (and I hate this about myself) the fact that she refused to take steps in the gait trainer overshadowed my joy over her standing at the water table just moments before. Some moments sting. They just do.

And, then there's the fact that our disabled parking placard expires today and I need to renew it. (Yes, Sam is still at the age that she'd be in a stroller even if she were mobile, but where we live, parking at medical buildings costs a fortune, and if we didn't have the placard, we'd be spending $46 A WEEK to park at her therapy appointments and preschool!). This is our third consecutive "temporary" permit (good for six months) and B said, "I don't know why you won't just get a permanent one so you don't have to do this every six months." But, I can't. I don't want to. So, I didn't. I just sent the temporary placard forms to the doctor, and darn it, I'll do it again in 6 months. When we first got the placard, my stomach flip flopped each time I used it. It no longer does that, but renewing it stings. Can't deny that.

After those few "stinging" realizations or moments, I logged onto my little delayed darling support board and one of my favorite mamas had posted about how she got her daughter's latest evaluation back and how much it hurt her heart to read. Evaluations stink. As I've said before, I'd challenge any parent to sit in a room watching your child be "evaluated" for two hours in areas they struggle and then get a 5-6 page report detailing those struggles and every task your child wasn't able to complete and not want to take your child and run away to the nearest deserted island where there are NO evaluations. So, unfortunately, that post sent my mind reeling to Sam's upcoming preschool evaluations in August (before her transition from regional center to school district services) and I felt that familiar lump of anxiety in the pit of my stomach. Stings.

We also know that we need to start thinking about what equipment Sam will need for preschool, including getting her a gait trainer (which is probably another reason why her lack of enthusiasm over the one at school hit me harder), and this has been a challenge for us because there's so much to think about and consider. Sam's PT doesn't believe in gait trainers for low-tone kids, but she's pretty stuck in her way of thinking and (I think) sometimes looks at kids as very one-dimensional (e.g. she doesn't consider how the independence gait trainers/walkers allow enhance cognitive and social development; all she thinks about is the motor component, and she thinks sometimes giving low-tone kids the 'fall back' of a gait trainer makes it harder to motivate them to walk independently, though I've been told by other PTs that more current research says the opposite is true - the earlier you can give a child independent mobility -- even if its in a power chair -- the GREATER the motivation for independent walking). The PTs at Sam's school, on the other hand, are huge advocates of gait trainers -- because they think the cognitive and social benefits (of being eye-level and up and about with peers) outweighs the other stuff. My gut tells me that's the right approach for Sam. BUT, at school, the PTs swear by the kidwalk and don't have many other options to try. And, I know from talking with other parents that the same gait trainer doesn't work as well for every kid, so before we invest in a piece of equipment for her that will cost thousands of dollars, we really want to try out a lot of different ones and find the perfect fit, and clearly, that's not going to happen with her PT or the ones at school (nor do I necessarily think they are the ones with the best experience to help us in this area; we want someone who has worked with kids in tons of different trainers, who believes in their effectiveness, and is willing to try try try until we find a great one). I LOVE LOVE LOVE Sam's preschool program and every one of the staff there, but my one disappointment, or I guess, their one unfulfilled promise to us, is that they haven't been as proactive as they'd said they would about trying various equipment. When I've brought up other gait trainers, they've generally just given me their spiel about why the Kidwalk is superior to all other gait trainers . . . so much info. So much to tease out. So much worry that we pick the "right" equipment, when part of my heart just hurts that we are picking this stuff out at all. Stings.

SO, with all THAT in mind, and the fact that we'll be losing our regional center funding for PT in September anyway (and will want to supplement whatever PT the school district offers with private PT), I've been researching PTs in our area, and have *finally* gotten an appointment for the end of July with the PT who is supposed to be the best of the best at our Children's Hospital. I'm also told that the PT department at Children's is "PT Heaven" -- tons of great equipment, great relationship with vendors (for equipment trials), etc. So, even though it is kind of a drive, we are excited about this. Though my instinct in life is to fear or avoid change, this is one time that I'm excited about it. I think the change will be good for Sam. I also kind of regret not doing this long ago. Sam's PT ALSO came to us highly recommended, but over time, B and I have generally been disappointed in her professionalism, and also well, she's a little "lackluster" in her enthusiasm, and rarely tries new things. I think in a lot of ways, she uses a "one-size-fits-all" approach, and I just think with kids with delays (or any kid, really) one-size rarely fits all. I've gotten bored with her sessions which are whole lot of the same thing every single time, and I know Sam has too. I think shaking up the routine on PT might be fabulous for Sam (kind of like if we were to work out with a new personal trainer after sticking with the same one for years).

So, here's to hoping that with change comes progress. Because, truthfully, I need it. I am SO very very grateful for every word that comes out of my girl's mouth, every new thing she learns (she's now counting in spanish to 5 :o) thanks to Dora!), every amazing thing she shows me that she knows. But, I'd be lying to everyone if I didn't admit that right now, I'm *needing* some smilestones in the gross motor department. There's so much guilt in even admitting this. Because I love my girl just as she is. Perfection. But at the same time, I'd do ANYTHING to make life easier for her. To remove some of the obstacles in her way (even if she doesn't yet realize they are obstacles). To see her playing in the floor and pop up and run into my arms. To walk holding her hand. I'd give anything.

The transition to the school district gives me such anxiety, but I just keep hope hope hoping that all the *right* people walk into our lives - her life - via this transition. That even though our team is changing, that we end up with an even better "Team Sammie B" that will truly help her accomplish amazing things and be her best little self. And along the way, may some of those obstacles fall out of the way. Hope hope hope.

Oh, and then there's this . . . many people have told me that having a diagnosis would make getting services easier from the school district (which is just silly, that they need a label to justify fulfilling what are obvious needs). So, I bit the bullet and talked to several of her doctors about a cerebral palsy diagnosis. Not because any of them necessarily believes she has a "true" case of CP (she had a clean MRI, though I'm told that doesn't necessarily rule out CP, though 90% of "true" CP cases will have some abnormality on their MRI), but because CP is often used as an "umbrella" diagnosis for a movement disorder when nothing else fits. And, most of her doctors' advice was, "if you can get the regional center to classify her as having CP, do it, it will help her get services in the long run." So, I called the regional center neurologist, went through her medical history, etc. over the phone, and he agreed she could be classified in that sort of "umbrella category" as having CP. And, even though I know that could help her, and even though I've said that after all the tests we've done (and thus, things we've ruled out), CP kind of felt like no-big-deal, I hung up the phone from the neurologist, called B, and sobbed. And he got it. He got why it stung. But, he reminded me, "it doesn't change who she is," and I know it doesn't. It's sort of silly, it's almost a "fake diagnosis" in the sense that the doctor's are applying it because there's no other label to apply, but yet, it still stings.

But despite the stinging moments. Despite the labels and a placard I wish my girl didn't need, there is one thing that is certain -- no label, no placard will EVER define who Sammie B is. And I know that from the bottom of my heart. Her magic defines her, and always will. Her magic that enchants me every single day. So even though there will be occasional "stings" or "slaps," we keep going. We live each day to make sure our magical girl has every opportunity in the world to become her best little self. Her best, most magical little self. The self that only SHE can reveal.

And so, even though I've felt a little "stung" in the last twenty-four hours, I'll end with the truest statement I know. The same words I said to my sweet girl the other night as I sat with her, while she did her wall-standing and watched Dora on the I-Pad (two episodes - that's 50 MINUTES OF STANDING PEOPLE!):



Kristen said...

I am crying, friend. Ugh. I can relate to it all. It's not the life we would choose for our sweet babies, is it? Yet, they have such a purpose and were made so perfectly and wonderfully. Still doesn't take the sting away at times, does it? I'm here for you, cheering you on miles and miles away.

abby said...

I don't have any words of wisdom, but I know a bit about how you are feeling and just wanted to reach out with a virtual hug. The labels don't define our kids, and they also don't suggest stasis. Our kids are fabulous and are making tons of progress. And I agree about how important it is to foster Sammie B's independence at preschool. Don't ever accept a cookie cutter solution for our kids (I hate when 'specialists' advocate for this because it is easier to do so). Our kids are individuals, not cookies.

Anonymous said...

I had the same issues with yes/ no to the gait trainer for my daughter and our PT recommended this one:
It is not expensive and works very well for us.