So let’s talk about what we aren’t doing out here.
We aren’t curing anything. SPD doesn’t go away. (That hurts to write. Ugh.) SPD is something Becca will learn to live with, just like thousands of other kids and adults out there. Frankly, I suspect we all have our “sensory thing” to one extent or another, but when it becomes something that interferes with your ability to function independently… that’s when you get help. To one degree or another SPD will become a way of life for all of us, but most especially for Bex. As much as my heart wishes we could just make this go away, my head knows that hard work and consistency will make things manageable. I’m hopeful that someday Becca’s experience of the world will be a strength that allows her to not only thrive but that will allow her to share her unique perspective with the people and communities around her. Becca has a kindness and a sparkle that can’t be beat. It’s fun to imagine how she might unleash that on the world someday.
We aren’t expecting miracles. Look: I’m not going to lie, as the departure date grew closer I became more and more anxious that maybe we had made a mistake. I couldn’t (and still can’t) bear the thought that we had uprooted our family for nothing – all the hours invested in researching, planning, financing, preparing… it’s just so much. But we’ve never expected a magic bullet. We’re just looking for more tools that we can use to harness even greater gains in her other therapies.
We aren’t doing those either – other therapies, I mean. No PT, no speech. In fact in many ways we are using this time to strip those things away. And – real talk here – that is HARD HARD HARD for this speech pathologist to do. I can’t tell you how many times I have seen perfect opportunities to build on a phrase or reinforce concepts…. But that’s not why we are here. Right now we are lifting the burden of those things (language, speech, running, jumping) so that Becca can engage her body and mind with her environment and with us. But here’s what’s amazing: in spite of very deliberately paring those things away, they are emerging, too.
We aren’t becoming experts in SPD… but we are becoming experts in Bex. This is humbling work, friends. It would be easy to feel guilty for failing her all this time (and sometimes I do), even though I know we’ve just not had all the pieces of the puzzle yet. I can’t tell you the number of times I have stood with parents and had conversations about complex decision-making and have said “you are the expert when it comes to your child; no one knows him better than you.” And even though that’s still true about Rob and me when it comes to Becca, there is clearly a chapter we missed in her owner’s manual. I have to fight off the feeling that we could have done more, sooner. But you don’t know what you don’t know, right? And we are here now, learning and working so hard to be the parents that she needs.
We aren’t resting. Safe to say that all five of us are working hard and pretty exhausted all the time. How do I know this? Becca, who eats like a bird, spends her days now insisting “I HUNgry.” Sara, our 11 year old adventure girl, when asked this morning what she would like to do today, said “can we just stay home?” Rob and I are known to nap now and then. And Libby… well, Libby powers through her exhaustion. (It’s exhausting.)
We aren’t stopping. I’m not gonna lie, I woke up this morning and I just wasn’t feeling it. None of it: parenting, cooking, showering, learning, playing, nothing. I threw back a handful of supplements, hoping an extra kick of Vitamin D and that B complex would get me over the hump but nope nope nope. Sure, I got up, fed the kids, barked at my husband, went to STAR, took the feedback from Mim, came home and fed the kids again. Then I checked out. Because in case I haven’t mentioned it before, this program is A LOT. Mentally, physically, and (for me at least) emotionally we are being challenged every day. And so today, for a couple of hours, I crawled in bed and checked out. But I’m not stopping; we aren’t stopping. She has already come so far and I know we still have so much to learn. Still, every now and then, we have to give ourselves a little grace. We can check out for a while – but we will always check back in.
There’s a lot going on out here, despite all the things we aren’t doing. We are learning to help Becca navigate through a world that is a little more chaotic than our own. Sara is emerging as an exceptionally patient and loving big sister, shouldering a load I wish she didn’t have to but doing it (more often than not) with a good sense of humor and more maturity than you can rightfully expect from an 11 year old. We are enjoying many of the beautiful things that Colorado has to offer. I am finding more clarity about who and what I need to be not only for my family but for myself.
We’re nearly half way there, and I’m fighting off the voice that whispers “how will you ever be able to keep this up after you leave” with a stronger voice that says “look how far you’ve come – imagine how much further you can go.”