I am a woman of few passions which extend beyond cured meat, booze, and…well, those kind of top the list. BUT…I’m growing! I have added a passion to my list, and it’s “accessibilizing”. Yes, it’s a made up word, and yes, it is really stupid sounding, but I want to share it with you, because as it turns out, lots of people like stupid made up shit and maybe it’ll make me hella rich and famous (Game of Thrones, anyone???) I’d be happy to talk to anyone and everyone about this new passion of mine over a glass of bubbly and some salami, but I hope to reach a broader audience by sharing my new passion in this medium.
*However, that in no way indicates that I’m not currently drinking champagne and noshing on a cured pork tube. YOU’LL NEVER KNOW.
Anyway, on to my point. Accessibilizing. It’s loosely defined (by me) as the ongoing and zealous effort to make everything accessible to everyone.
I realize this is not a new idea (umm duh the ADA) and there are countless advocates around the world fighting daily to make their environments more accessible for themselves, their loved ones, and individuals with disabilities in general. And I thank them for that very sincerely, because honestly, (and here’s where I reveal that I’m kind of a shitty person)…I am too exhausted even thinking about that level of advocacy that I haven’t done it yet, and maybe never will to that degree.
My focus right now is on accessibilizing my own child’s life.
It’s really all I can handle at this stage in my/her life.
I feel guilty about being too shitty to doing anything on a broader scale, guilty enough that I want with all my heart to work toward a greater level of advocacy and commit myself more wholly to it in the future. It’s SO important and I want desperately to fight the good fight with the badasses already out there doing it. But I keep coming back to the words of a very powerful and wonderful rare disease advocate I heard speak just days after we got our diagnosis. In a nutshell, she said that not everyone’s advocacy has to look the same, nor should it. We each have gifts we can use to improve the world and it’s totally ok if we don’t set the whole damn globe ablaze with our efforts. As she stood in front of a room full of nearly a hundred hopeful, anxious family members affected by rare disease, working diligently to establish a center for rare disease excellence in Kansas City, she said that at the beginning of her own journey with rare, she couldn’t have done what she’s doing now. And I keep coming back to that idea that it’s ok if all I can do this month or this year or even for the next few years is advocate for my own child only. The bigger stuff will hopefully come, but I’m not rushing it, because I’m not ready. And I want to get take my time getting ready so I can do a damn good job later.
The other major phrase I constantly repeat to myself is one that I also heard at the very beginning of this journey, and the way I remember it is, “You will find exactly the strength you need right when you need it, no sooner and no later.” Thank you a million billion to the glorious creature who said that to me; I have repeated it to newly minted members of this unique and beautiful community in the hope that it gives them the peace it has granted me. It’s such a nice reminder that I don’t have to take on everything right away; when I need the strength to do the big stuff, it will be there.
And while I’m thanking people for saying good stuff, thank you immensely to the woman who told James and I that we will find the divine along this road. While neither my husband nor myself are religious, we have been truly amazed at how much good exists within Mira’s diagnosis, and I am confident that if there is a God, he or she is surely shining divine light through our beautiful angel.
***long pause to collect myself and get back to my main point***
Accessibilizing Mira’s life!!!
Basically, a lot has happened over the last several weeks that’s totally pissed me off because it’s been unnecessarily hard for Mira and I get effing angry when my kid can’t do what every other kid around is doing. And sometimes I even start to feel a little bit sorry for myself in those moments, like when my back and knees hurt like hell from carrying her in mad loops around her grandparents’ bedroom in our vacation house so she can join in on the epic cousin chase of 2017. Or when James and I are sweating our mother effing balls off because we’ve just carried a freaking wheelchair up 7 flights of stairs because it’s the only way up from the waterfront we so badly wanted her to see. Or when I can’t get a good night’s sleep because I’m holding my child half the night and I’m also holding her movement disorder and she is incapable of calming her body, thus rendering me incapable of nodding off.
But it’s total bullshit to feel sorry for myself, and I assure you I cut the feeling off at the knees the second it rears its ugly head. Because my child deserves to chase her cousins around, and get up to the perch with the great view of a new city, and be soothed to sleep by her mother. And I will do everything in my power to accessibilize this life for her, dammit.
As Mira grows and her condition progresses, it’s hard not to worry endlessly about how to overcome the barriers she will inevitably face. My heart breaks when I think of all the friends’ houses she will one day be unable to enter because she can’t walk up their stairs and her wheelchair is too heavy to lift. It crumbles when I realize that one day in the next few years she’ll be too big and heavy and her movements too pronounced for me to carry her or even hold while she plays with her cousins on our annual family trip. And it shatters when I find out that there will inevitably come a day when air travel is not an option for her, thus limiting her access to the many parts of the globe I had hoped she’d one day see.
So all that being said, I’m trying to focus as much on the present as possible, with an eye to the future so I can be prepared to deal with these challenges as they arise. I am confident James and I will find a way to get her into her friends’ houses and let her play independently with her cousin crew and show her as much natural beauty as we possibly can. Where there’s a will, there’s a way, and by God, we have the will.
For right now, I’m trying to take on small but meaningful advocacy tasks so I can get my feet wet and see where it leads me. I am honored to be on the brand new parent and family advisory committee for rare disease at our local children’s hospital, and look forward to connecting with other powerful mamas and papas. I also plan to start reaching out to pharmacologists and various researchers at the medical school I work at in hopes of connecting some smarties in KC to other GNAO1 researchers so they can find medicines that actually work for our kids. I’m debating on raising hell with the FAA based on our recent horrific travel experience, but I need to work up a little more courage first.
So there you have it. Accessibilizing. Moving the needle. Making it happen. Carrying, wearing, pushing, pulling, inventing, connecting, and never giving up on finding ways for Mira to interact with the world in meaningful ways. I hope you all continue to see pictures of Mira doing the things she loves most: what everyone else is doing. I hope that you “like” pics of her playing with cousins and friends, hiking through national forests, throwing rocks into the salty sea, and eating braised pork and risotto (can you tell she’s our child??) for years and years and years to come. And if ever you stop seeing her #livingherbestlife, I’m serious when I request that you please tell me. Please remind me, if ever I need the reminder, to continue accessibilizing Mira’s beautiful life. She can, and will, do it all.