Bridges

Dear Addie,

I found this picture today of you at three years old. You had already learned to swing, pumping your legs all on your own at just two and could be found at any time of day from sunrise to sunset on the swings. Well before I understood that your love of swinging back and forth, all day, every day, was connected to words much bigger than you then, words like vestibular and proprioceptive. I mean what?!?! Say those three times fast! Never in my wildest dreams did I think those words would ever even roll off my tongue with such ease, but I digress.

Back then, it was simple. You, the swing, and the rhythmic dance you created, back and forth, like a language all of your own. I didn’t see therapy or sensory input or development milestones in this…I just saw joy. Pure, steady, unwavering joy.

Looking at this picture now, I realize how much you were already teaching me, even then. How to slow down. How to notice. How to meet you where you were instead of where I or the world thought you should be. I didn’t have the words yet, but you didn’t need them. You just needed the wind in your face and the freedom to move. And somehow, without either of us realizing it at the time, that swing became one of our first bridges, between your world and mine.

What I wouldn’t give to go back to that very day. Not just for your small hands or your infectious smile framed by those positively edible cheeks, that’s a given, but for time. Just time.

Time feels like it’s slipping away as I watch your siblings begin lives with less of us in them. And I realize I’m still not comfortable imagining your life without us. Does that comfort ever actually come? Your bridge into your adult journey… what will that look like? Are you happy? Will you want more? Will the world show you kindness? Will you be safe? Inevitably we will cross this bridge but somehow in my mind I just want a different path, I mean can we go by boat? Will that give us more time at least to keep looking for whatever answers I’m not even sure I’m looking for?

I’ve been told I need to manage my stress these days, but explaining why I have the stresses I do feels impossible. So instead, I smile, nod, and agree to drink more water. But inside, my heart aches for you. There are so many things I can’t make better, so many things I can’t promise it will be okay. And that’s what scares me most, what happens when we are no longer able to be there for you? Will you just wonder why? Will you feel sad and abandoned by us?

Saying these things out loud always seems to get the same response, “don’t worry, it’ll all work out” or “just have faith.” I know those words come from a good place and are well intended but if I’m being honest, It feels almost irresponsible to just trust in that and not to have a clearer idea of what comes next. Where’s the damn crystal ball when you need it?!?!   There are people who are really trying to give families like ours a clearer picture of life over that bridge and we are forever grateful to them at their extraordinary efforts as these missions for our community are most certainly an uphill battle most days. With no crystal ball we do our best to start planning for a life to do the work of what are hands and hearts have been doing all this time. A life of someone else taking our place.

This week, I came across a picture of a much younger version of you. It stirred something deep in me, a feeling I think all parents know, but one that feels a little heavier, a little more tender, in the steps we’re walking right now.

Addie, this journey brings oh so very many big emotions, more than anyone could ever fully prepare for. There are moments of joy, of ache, of wonder, and everything in between. But through it all, one thing never changes, how absolutely grateful I am, every single day, that we have each other.

No matter how big the feelings get or how uncertain the road ahead may seem, we’re in it together, crossing bridges hand in hand for as long as we possible can. Promise.

Love,

Mom