Keyholes

It's been quiet around here at The Crunchy and the Smooth, as winter has been doing its work on us.

We had a beautiful Christmas...

...and a great big storm.

We've spent lots of time indoors playing make believe...

...knitting...

...remembering sun and blue sky....

...and finding the sparkle in the season.

Heath has had some victories, of course.  Like drinking from a no-handle straw cup with both hands...

...mastering this balance beam challenge (with me at the controls instead of his Cuevas Medek therapist, Simona)...

  

...and stepping back and forth between Grandma and Grandpa Montgomery a million times.

  

 His speech is getting so much clearer!

 

And we still have hard days.  Here's a non-glamorous peek into the type of situation that is tough on both of us, but so necessary for Heath to find his independence.

 

Oof.  I'm not always such a Tiger Mother, but there are times when he needs to find out what he can do.

I've been pulled away from blogging by a couple of exciting projects -- the distillery Ryan and I are starting up in downtown Missoula is poised to open this spring!  We've been evaluating our new building, finding suppliers, designing the interior space, and trying out cocktail and punch recipes for the tasting room.  We've been having a ball researching the history of old Front Street!  The building in its original form is shown here, right under the "a" in Laura.

I've also become something I never wanted to be: a rabble rouser.  I was always daunted by the prospect of whipping up others' enthusiasm and asking for money in amounts large or small, but passion can force a person to do uncomfortable things.  When my friend Daria and I contacted Missoula Parks and Recreation last summer to request that adaptive swings be installed in some city parks, we didn't realize that the Parks director not only got it, but had a bigger vision.   Next thing we knew, she had set aside a spectacular piece of land in downtown Missoula for a large-scale, all-abilities playground.  Wow!!  Guess who volunteered to raise $275,000?  Yep.

 

Now, we've raised almost $52,000 and the The Playground Project: An All-Abilities Playground for Missoula has become a wonderful, crazy, enormous and more than plausible dream.  Jumping feet-first into this project was the best thing I could have done. Heath's feeding disorder days had come to an end and his toddler moodstorms calmed considerably when he gained the ability to verbalize his feelings and thoughts and play on his own.  I had some bandwidth.  It felt great to join with others on a big creative endeavor designed to vitalize our whole community.  Don't get me started on my elevator speech.... Anyway, as we've worked to build our planning committee, write a survey, run focus groups with kids and youth with disabilities, and reach out to local foundations, nonprofits and businesses as partners, I've been busy and energized and have met so many extraordinary people.  I couldn't have picked a better path of breadcrumbs to lead me to folks I like and enjoy and admire.

Allow me to backtrack down the breadcrumb path.  When Heath was born, and later diagnosed, we went down a rabbit hole.  We landed on our feet in a different world -- in another culture, in fact, a thriving, resilient, ruthlessly real subculture united by disability.  (I don't love that term, but there it is, and for all its imperfection it has come to have a sort of pride associated with it, in my mind...)  This subculture welcomed us, educated us, and looked us dead in the eye, saying, "It's OK. Really. No, really." 

I remember the day I knew we had to pursue a cerebral palsy diagnosis.  It was shortly after Heath's tube wean, when he was about 18 months old.  He was standing barefoot at his train table with several other kids his age.  It hit me unambiguously.  The way he stood, hung onto the table, stepped stiffly and gingerly to the side, and reached for a wooden train.  It wasn't the same as the other children.  It would not be the same, and our path was not going to be the path of other families.  For a terrifying, and brief, period, I was completely alone, with no sense of what these signs meant for Heath and his life.

Fast-forward a few weeks.  An organization called Parent-to-Parent at the Arc of King County had connected us with a family whose teen daughter was living with CP.  Anne, the mother, came to see us and brought a gift for Heath.  I scrutinized her - was she happy, exhausted, tragic, heroic?  The wonderful thing about Anne was that she was completely and utterly normal, but, unlike everyone else, she knew the fear and uncertainty I was standing in and reached out to me from the other side.  Her daughter wasn't with her that day, she had a last-minute invitation to a party, but she phoned and I will always remember talking to her as the voices of other teenagers echoed in the pizza parlor behind her.   She spoke with such clarity and wisdom and compassion for my ignorance: "He can do this.  He can totally do this."  I believed her.

That was the first step out of not knowing.  Next came Leslie, a family friend from my childhood who raised a daughter with more involved CP.  My mom passed along her number and I picked up the phone awkwardly, casting hope into the void that what she would tell me would not terrify me.  Les was funny, affirming, reflective, honest, and came to my aid wholeheartedly, fielding phonecall after phonecall from me for a few weeks as Heath's diagnosis was confirmed and inner and outer adjustments were being made.  I learned from her what it was like to raise a child with CP in the 1970s.  The obstacles Les faced were unimaginable, from profound family rejection to inhumane medical recommendations that she refused.  Things had changed so much for the better, I realized, flooded with gratitude for Les' generation of activists.  Though her daughter is now grown-up, working and living with her boyfriend, Les continues to advocate for the vocational rights of the disabled and visits older women with severe CP in a group home every week.  Disability has become her culture.

I survived tube feeding through the help of other moms.  Those I connected with had a common goal: How do we get our kids off these freaking tubes?  Once the kids were tube weaned, many went back to their normal lives.  Anne and Les were there to catch me when I fell through the vortex of a physical disability diagnosis and didn't know what disability meant.  It sounds strange, but I was profoundly confused about whether this was a tragedy or not.  They shared with me what it came to mean for them and their kids, and were my doorway to a larger subculture of ordinary people surviving and thriving in extraordinary circumstances. When I moved to Missoula, I found an even larger tribe -- of families like ours, adults living with disabilities, professionals, activists, artists and even a stand-up comedian, all on parallel journeys down the same river.  Each in our own boat, crashing and swirling through our own highs and lows, finding uncommon things as we go, and navigating by bright stars that broaden the vision and reassure the heart that we need not all resemble each other, and yet we are all the same.  Trite?  Possibly.  But true nonetheless.

What excites me so much about the inclusive playground movement is that it introduces the possibility for the disability subculture to grow stronger -- for us to find each other, in an atmosphere of gleeful fun -- while inviting the bigger world to find us -- to come to our rich, crazy party.  There are lots of catch-phrases and theories about inclusive play and all the lessons we will learn from each other about resilience, courage, diversity, and acceptance, but it all comes down to unique and uncapturable interactions between kids, between moms, between folks.  No matter what equipment we have, the playground will be a circle in the sand that says, "Come on in -- something special, hilarious, and liberating happens here. "  I'm determined to see it happen and see it live up to its promise.

So if I'm not posting here, I'm probably rabble rousing (or mixing whisky cocktails).  Thanks to those of you who have come over to Facebook for the little updates and photos marking Heath's journey into boyhood.  Blogging was my free therapy for so long -- at first it was a way not to have to talk, then it was a way to make magic by invoking all that was good.  It is still wonderful when Heath reaches a goal, but I don't hang so tightly onto his "progress" as I used to, because this journey has become less about "outcomes."  So, blogging has changed its purpose.  Maybe now this is a quiet place to say Pssst!  To point toward the keyholes that have appeared in our very ordinary lives as a result of disability -- itself something ordinary, ever-present, and natural -- and which have revealed more than I thought possible when this journey began. 

For one, the paradox that disability is the simplest metaphor for being human.  We are all limited, all shaped by our injuries and inheritances, and all isolated at times in our absolute uniqueness -- which we share with absolutely everyone.

Wishing you a happy and healthy winter.

Comments

[Grandma and Grandpa]

Thanks for all you do!

[melissa aka equidae]

what a lovely post. ITs funny that what we define as disabled or normal has still all the similarities and ups and downs. It would be wonderful to meet up with you one day and learn from each other :)

[abeer]

Jenny!

It's so wonderful to read the new post and learn about the updates. I like the organization of the post: first, you start with pictures and short videos then your deeply thought reflections on what's going on in your and Heath's lives.

I sincerely wish Ryan and you success in your distillery business.

Heath has grown up more and he certainly looks cute in the pictures above. I love this idea of all-abilities playground as it is very much needed to dismantle these imaginative barriers that we erect between each other. It's a truly wonderful idea and I hope that you will succeed in the fundraising efforts. Boy! you are such a powerful rabble rouser!!Go Jenny!

I send love and big hugs for you, Ryan, Heath, and all your families' members

[abeer]

Happy birthday to you,
Happy birthday to Heath,
Happy birthday to you.

Sana hulwa ya Heath,
Sana hulwa ya gameel,
Sana hulwa ya Heath.

May the new year bring you happiness and more milestones of victories on all aspects of life. Amen!

With much love and big hugs for all of you.

Abeer