When disability sucks, at least there’s fingerpaint (Sept 13)
As we blog less frequently, the list of things we could report on starts to pile up. We took Lucas on a big trip into the Shenandoah woods with friends this past weekend. We’ve been going for more walks around the neighborhood as the weather cools. Lucas is learning his colors, and if you ask him what color the trees are, he’ll say “neen.” One of Lucas’s most devoted blog followers (besides his grandparents) was in town from California last week, and she and Lucas got to meet for the first time.
And disability has felt harder recently. It’s scary as we think about the future; infuriating when people gawk at Lucas when we’re out for a walk; tiring as we go through our limited routine of books, blocks, puzzles, and computer games over and over and over; complicated as we relate to more people about parenting, feeling like most of our experience is happening on a different planet than typical families.
So we think we might write about all of that at some point. In fact we were thinking about writing about some of it today. And then this afternoon, after a year of HATING finger paints, Lucas changed his mind. And suddenly that seemed like the most important thing to write about tonight.
Because for about a year, we’ve tried to convince Lucas to use finger-paints. He’ll draw with markers and crayons, but that’s complicated for a kid who has so little muscle strength. He’s taken to using watercolors recently, which require less pressure on the paper, but that takes precision that he did not have six months ago. Finger paints seemed like the obvious solution – so much less precision needed, so much more color with less brush strokes. But every time we tried, just barely touching his finger to the wet paint, he’d lose it. More than once he got so mad that he turned red and set off his pulseox alarm just at the sight of one of us finger painting and asking him if he’d like to try.
And then today, Krista asked him if he’d like to finger paint. Lucas signed a timid “yes,” and he gave it a try. And then he proceeded to ask for more paint and more paint and more paper and more paint for the next hour and a half. It was awesome.
Comments (10)
carol
September 22nd, 2011 at 11:23 am
YAY! I’m so thrilled Lucas is into fingerpaints. I can’t wait to see more of his creations and maybe paint with him someday. I’m also excited you all made it to and enjoyed the accessible cabin. I thoroughly ruined some decent food on that grill, but loved the space and watching the sunrise.
Emergency clown noses and silly faces are my favorite way to react to gawking, but it can still be so exhausting. Much much love to the whole family!
trin yarborough
September 15th, 2011 at 1:48 pm
I thought Lucas’s picture was beautiful. Hope to see more of his art in the future.
Lots of love, Trin
Jocelyn
September 14th, 2011 at 12:27 pm
I hope Lucas (and his mom and dad) are willing to part with a picture or two–my kids would love to have some Lucas originals for their new walls!
I can’t imagine how infuriating and difficult it must be to raise Lucas in a world where other people’s bodies do more than his–a particularly difficult task given that two year olds are so invested in finding out there place in this world. But I just wanted to say that my own kids’ lives are infinitely richer because Lucas has been a part of their experiences. They still talk about him often and are invested in following the pictures and videos on his blog. The world may not yet be ready for Lucas, but wow, Lucas is going to have a powerful impact on this world, and we’re all going to be better, stronger, more generous people because of the strength, love, and spirit he is sharing with each of us. I remain ever in deep admiration of the strength and courage and love with which all three of you greet every day. Sending hugs, Jocelyn
Max
September 14th, 2011 at 12:01 pm
How exciting, the fingerpainting!
How fabulous to get to hang out last weekend!
And, infinite respect for your honesty and hard work in the face of constant challenges.
Love love love
tom
September 14th, 2011 at 11:18 am
a small poem, for Lucas :)
a humming bird beats its wings a hundred times in a second
in a minute you could fly to the moon on a beam of light
fall in love
and still have time to wonder at the flash of sun in the drop of water falling from a duck’s beak
in an hour you can paint every color in the universe
with your fingers
and discover the infinite possibilities
of life
timeless
Liz
September 14th, 2011 at 10:01 am
Ah, yes…The relief and excitement when Lucas succumbed to your finger paint offers must have been great. It’s amazing to see the fervor with which he went at his artwork! Gorgeous! Sha and Jacoby said it all so well–the journey you’re on is indeed full of hard times and challenges and you guys are incredibly inspiring in how you’re embracing these things, learning and growing from it all, courageously sharing your stories and revelations and anger and sadness and joy with all of us who love you. I know that I am learning a great deal as you share your insights and difficulties–about disability, about parenting disabled children. And I know I am celebrating every wonderful achievement that Lucas makes that much more, for having the whole picture. Love you all…
alan
September 14th, 2011 at 9:51 am
Looks like you’ve created a finger painting monster! An adorable, squeezable monster, that is. If Lucas and family are on another planet, that’s the planet I want to be on.
Tio Sha
September 14th, 2011 at 8:52 am
YES! Finally the finger paint has made its debut! And a lovely debut at that, I’m looking forward to seeing his masterpieces.
Thanks for sharing the awesome moment and also the tough parts, the gawking, the tiresomeness of limited routines, the complication of connecting with other parents and families. Thanks for sharing your persistence and passion for creating amazing moments like this fingerpainting, or like the beautiful weekend in the woods with Lucas. I continue to be so inspired by what you all are teaching me as a family, how honest and committed you are to holding the weight and gravity, sometimes very literally, of Lucas’s challenges, and at the same time to celebrating the incredible touching sweet moments of new words, his ecstatic joy in small things that become huge wonders. Watching you all adapt and grow and blossom as a family gives me so much hope and example for how to raise my own kids someday.
I’m in NC until next week, but let’s make a finger painting date soon! Lots of love ~ sha
Jacoby
September 14th, 2011 at 8:30 am
Hey loves,
I understand the fury of having to deal with institutional, interpersonal, and internalized ableism all the time. It’s deep, and all around us, in notions of health and what ‘healthy’ should look like, in the way we move, in whats considered sexy, in who is considered ‘capable’, in the stares that you write about. And I know your experiences as parents of a beautiful dis/abled child differs greatly from my experience as the partner of a beautiful dis/abled partner.
I am in full support of you writing about the hard stuff-that vulnerability is at the heart of growth. I love you three so much, and trust your beautiful hearts and brilliant minds.
Love.
Gabriel
September 14th, 2011 at 8:05 am
That is so cool! And while your challenges are greater than any parent I know, Lucas just exhibited behavior that I can totally relate to: not interested, not interested, not interested–oh, I like that! Give me more! More!
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