Again, it’s been a while since I’ve posted. Life has been less dramatic, but pretty action packed with a veritable bunt cake (I’m hungry) of both post-trauma stuff and standard family stuff. It’s been:
- Two parts normal, everyday routine: school drop offs and pickups, extra-curriculars, groceries and laundry, negotiating what’s appropriate to wear as the season changes, frantically searching for gloves and hats and mitts and lost stuffies, packing into the car because we’re generally at least five minutes late for almost everything. This stuff is good. We appreciate this stuff now…even the parts that are a pain in the ass.
- Two parts post-pediatric stroke rehabilitation: twice weekly occupational therapy and physical therapy, therapeutic play at home, finding tricks and toys and apps and kids to play with. This stuff is going exceptionally well and my daughter is moving and happy and loves her “friends” at the rehab centre. She is also in desperate need of kids to play with. We’re working on that. She needs good, genuine play. It’s better therapy than all the rest.
- One part medical appointments: orthotics fittings, seating clinics, endocrinology, developmental pediatricians and new physicians. And MRIs. Ugh, the MRIs. The tumour is a scary beast in the background, but for the time being, it’s on MONITOR, not TREAT, so we try to focus on the rest.
- One part coordinating: therapy and appointments and life around it all.
- One large and looming and ever-present part fear: fear that all this work will be for nothing, fear that the joy of just living our normal lives will go back on hold, fear that it won’t be ok in the end because the remaining tumour will persist and grow and push into all the important things in our daughter’s head and our lives. This particular fear permeates everything…just a bit, but enough to cast a funk when you least expect it.
We’re trying to figure out how to manage it all. Therapy, of course, would be good, but we haven’t made that happen yet. There are support groups and forums and resources aplenty, but navigating them is time consuming and finding the right fit is hard. Thanks to our recent adventures in the sprawling world of medical trauma, we belong to so many different clubs! (So popular!): food allergies, cancer (It’s not malignant but it sure as hell shouldn’t be there, and is therefore under the umbrella of oncology.), brain tumour, pediatric brain tumour, stroke, pediatric stroke, visual impairment, acute brain injury, hemiplegia, hemiparesis, physical disability, chronic life threatening illness, families and siblings of all of the above. Terminology and grouping of conditions and diagnoses vary, so the search is overwhelming to say the least. We haven’t quite found a community where all of these things intersect. (And they say you can find a community for ANYTHING online…)
While we’re still in search of the right professional help (aren’t we all?), one tool in our kit to cope with all this is music. We don’t make it, especially not me (not a musical bone in my body)…but we love it, we always have something on, and there has always been a pretty defined soundtrack associated with events in our lives. My son, from an early age, bought into our enthusiasm and established his own playlists far from the standard kiddie tune parade. My daughter, well, we fought a little less to keep her from the hard core kids music (I’m looking at you, Music Together.) because she was our second and we’d already fallen off our high horse. More recently, as we moved through all this chaos, music (especially, to our torment, her love of The Wiggles), was something she could connect to and find comfort in, even in the very worst of circumstances. So we’ve just rolled with her three-year-old tastes. We’ll focus on indoctrinating her into the Canadian indie scene later.
The point, is that music is a good place for us, as it is for a lot of people, and throughout this particularly shitty phase of our life, it’s been a therapeutic place as well. Of all the apps I’ve got on my phone, Spotify has saved my sanity more than any other. Sigor Ros sat with me in waiting rooms and on rocks outside hospitals as I cried (with happiness and despair). The Wiggles irritated the crap out of me, but I am undeniably thankful that they soothed my daughter through terrifying nights, shitty procedures, and fucked up sensations. DJ Shadow captured my anger and dared anyone to even think about talking to me when I really just needed to hit something.
I’ve been struggling with what to write on this blog for the last while, feeling the need to process everything but being completely overwhelmed by it all. Where do I start? Not at the beginning. I’ll get caught in the details and never get out.
I figure the music that gets me through, or at least sometimes feels like it gets me, is as good a place as any to make the page a little less blank and get writing again. Also, as a music lover reaching out into the universe for some footing, maybe some of the songs I highlight here (good, bad, or guilty pleasure) will resonate and connect with someone else. I won’t go through the whole song and I’m not going to analyze or review it. I’m just going to drop it out here and let you do with it what you will.
Good tunes can do good things. Here’s hoping my music therapy helps to make someone else’s day less shitty when they need it.
Music Therapy #1: Your Heart is a Muscle the Side of Your Fist, by Ramshackle Glory
I don’t know anything about Ramshackle Glory. I dabble in punk (teen of the pop punk 90s here), but I’m superficially familiar at best, and honestly, this song was spit out of a generated playlist. I don’t know how the algorithm works.
It’s a little bit peppy and a decent bit dark. It pushes me forward and it also makes me feel like I’m not alone with the feeling that being positive (what everyone tells you to do in these situations) is hard fucking work. The day this came on wasn’t a terrible day, but it wasn’t a good one either, and I just needed it. I need it pretty regularly.
Dalia never showed me nothing but kindness
She would say: “I know how sad you get.”
And some days, I still get that way
But it gets better
It gets better
It gets better
Sweetie, it gets better, I promise you
And she’d tell me
Your heart is a muscle the size of your fist
Keep on loving. Keep on fighting
And hold on, hold on
Hold on for your life
Keep on loving and keep on fighting. It’s work, but as any sporadic gym goer knows, it’s a hell of a lot easier to maintain than to make a comeback.