“Sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these.”
― Susan B. Anthony
Warning: This post starts out sad, but it ends really, really, really happy. And it’s long as shit. BUT, there are a lot of pictures. You’re welcome.
It took me a long time to let go of the idea that we could celebrate milestones the same way other families do. I still struggle with it occasionally, but overall, I have to commend myself for actively choosing every day to stop comparing my child to other children and our family’s journey to that of other families. That being said, I’ve lately been reflecting on just how different our “firsts” are these days than what we anticipated even a few months ago. Pre-diagnosis, we still knew better than to compare and lament the obvious differences in our story. It was no secret our child would face far greater challenges than the children of our peers, and that as her parents, we would have a much different road than those traveled by our friends and family. Now that we know more about what Mira’s future may hold, however, our differences are even greater, and the chasm between expectation and reality for our child’s future has expanded to an almost unrecognizable width.
As James mentioned recently, when we still thought Mira probably had cerebral palsy and not this super rare genetic mutation, we had acquired a whole new vocabulary. As someone with experience in special education, these words were not unfamiliar to me abstractly, but I never anticipated using them in my own home, let alone with the frequency I now do. But then we got the GNAO-1 mutation diagnosis, and our vocabulary expanded again, and this time in a much shittier, more foreign way.
The following words (most of them, anyway) are not new to us as educated adults, but certainly as parents:
- brain atrophy
- storms (in reference to chorea)
- progressive movement disorder
- germline mosaicism
- recurrent hospitalizations
- gaze-tracking technology
- ketogenic diet
- more medications than i care to list
- deep brain stimulation surgery
- see also: “life-saving”/”last chance”
Shittier, right??? I don’t have the energy to explain all of this, so if you want to look any or all of it up, be my guest.
I want to be clear about something, though: these are not all things that we can necessarily expect for Mira; they are just symptoms and experiences that many other families with this mutation have experienced and we feel it is important to know what’s possible, especially given the geneticist’s understandable limitations in providing us with any sort of prognosis. The scariest thing about all of this, by far, is how unexpectedly many of these symptoms occur for these kids, and how they can display none of them for years, and then suddenly their world turns upside down. Again, to say we are expecting all of these things is a misstatement. We are merely arming ourselves with knowledge of the experiences of the only 35 or so other families around the world who have this diagnosis so that if and when similar challenges arise, we are more prepared for them.
All of that being said, it is still possible that Mira will be able to walk (though likely with assistance and only for short distances). The talking piece remains to be seen, as the vast majority of kids with this mutation are nonverbal. Mira is becoming rather excellent at making choices using her gaze, however, and we are tremendously excited by the possibility of communicating with her in more complex ways one day with the aid of special software which would track her eye movements.
And also, this hopefully goes without saying, but we will never give up on Mira. We have no idea what she will achieve, but we know that it will be great.
Thus concludes the sad part of the post!!!
So in all this talk of how different our milestones and firsts are as a family, I want to provide several examples of fabulous firsts that we’ve been experiencing, collectively and as individuals. I’ll start with Mira, for obvious reasons.
Mira Katherine Crump
- MIRA GOT HER NEW CHAIR THAT YOU ALL PAID FOR!!!!!!!!!!!!!!!!!!!!!!!!
All of the pictures we have of her in it are a little blurry and she’s not making eye contact with the camera, but guys…that’s because she’s so freaking excited to be up at everyone else’s level interacting in an age-appropriate way that she can’t contain herself! She has to see it all and whip her head around constantly to do so!
From the very bottoms of our ever-expanding hearts, James and I thank you all so, so much for your generosity in making the purchase of this chair possible for Mira. We love you.
2. Mira independently initiated six steps in her treadmill at school!
She doesn’t yet bear weight using this device, but is slowly learning how to pick one foot up after the other. One step at a time, baby girl….
3. Mira became a race car driver!
At school, she has a little retro-fitted toy car that she is learning to drive. She made the causal connection between the big blue button and and going vroom vroom for the first time two weeks ago! She was chasing her speech pathologist. 🙂
4. Mira became ornery and plays wicked games with us now!
New favorites include playing with her food and smearing it all over her clothes, grabbing things out of our hands and/or yanking us (me) around by our (my) necklaces, and pulling our fingers into her mouth to bite them. She laughs maniacally after these feats, and it’s very hard not to join her. See evil genius below:
5. Mira says “Hi”!
So we don’t actually know for sure that this is happening…but we’re pretty sure it is. She has said it in context several times (and out of context a lot more than that). We obviously want to believe the best case scenario, so we’re going with it! “Hi” from Mira!
James Richard Crump
- I had the all-too-touchy-feely privilege of watching my soulmate act as best man in his best and oldest friend’s wedding last weekend. I won’t go into boring details about how much I love my husband or how proud I am of him or how many sweet shout-outs I got during his incredible speech…just know that I am really diggin’ my man, and I know he was beyond proud to stand next to his best friend on the happiest day of his life.
- James, in typical badass James fashion, has another new project. But this time it won’t take up any more space in our house! Can I get an “AMEN”?!?! But for real, I am super proud of him and happy that he’s taking the initiative to start putting together a parent forum at Mira’s school. I’m sure he will happily share details at a later date, I just wanted to publicly acknowledge how hard he’s working for not only our daughter, but also on behalf of other families who are struggling.
- James got a new office! It’s really pretty! But it’s about triple the commute he used to have and there’s nowhere cool to get coffee or lunch anymore. But even though he’s not nuts about it, he recognizes that it’s a better location for his clients and he hasn’t complained.
Nicole Kornfeld Crump
- I had the thrilling experience of getting to watch one of my best and oldest friends (sensing a theme here?) live out her girlhood dreams. She is in the 25th anniversary touring production of The Phantom of the Opera, and I (along with my beautiful momma, my other bestie, and her mom) got to see her grace the very same stage on which we first saw POTO as little girls. I was blown away. Love you, lady.
- I successfully shook a bag of Doritos out of a powered-down vending machine at my new job and told my boss about it. He told me 118 people/year die doing that, so he was obviously really impressed. It may have been the third coolest thing I’ve ever done (see 1. marriage, 2. baby).
As a Couple
- James and I joined a few groups. We’ll be attending the annual leadership summit for a local organization called RareKC. Look them up. They’re cool, and we’re excited to get more involved.
- We also joined a private group on Facebook for parents of kids with GNAO-1 mutation and we’ve learned a lot. We’ve been fortunate to already make wonderful connections with kind strangers across the globe, and are very grateful to them for sharing their stories with us and selflessly helping us navigate this journey.
- We’re watching The Bachelor for the first time ever together. I mean, we’ve each watched it as lonely losers in the past, but this is our first time watching it as a couple. And that’s all I’ll say about that.
As a Family
Ok, this is where this post ends, I promise. And I promised this post would get “really, really, really happy”, and I’m delivering on that promise.
When we checked the mail last night after a long weekend of partying (woe are we), we found the most incredible package any of us has ever received. Inside a large manila envelope covered in stickers, magic marker, and an unrecognized return address, were gorgeous letters from a kindergarten class in Olathe, KS. Their teacher had learned of our story through a mutual friend and asked her class to write to our family. It’s part of an ongoing kindness initiative this wonderful woman has undertaken with her students, and we could not possibly be more thrilled or humbled to be the recipients of this very pure, very sweet, very colorful and misspelled outpouring of love.
We will cherish this gift forever as a reminder of the inherent goodness of people, and as a symbol of the strength of a community. Thank you to all who contributed to this amazing project; may your lives be as blessed as ours have been.