Archives for posts with tag: hannah

IMG-0121Grace and Kevin entered the empty waiting bus for the State Fair first.  Graham and I followed.  The bus driver had everyone else wait while he and Kevin made sure Grace was all fastened down for the ride. Graham chose seats for he and I.  He chose the bench right by the accordion on the double bus.  We were all settled when the rest of the people filed in and eventually the bus took off.  There were three people across the aisle from Graham and I.  I can only guess a mom, dad, and college-aged daughter. Two of three wore Iowa State shirts, the other a shirt with the American flag.  They all wore Nike shoes that had seen better days.  I noticed the man’s gaze settle on Grace.  “I’m surprised someone would go to all the work to bring her out here,” the man said.  He was looking right at Grace as he said it.  I leaned forward but looked down.  His wife didn’t say anything immediately but then she said “Maybe they just take her to a few things”.  After a pause he spoke again saying “Maybe they get more out of things then I know.”

If the two of them said any more I missed it.  I missed it because Graham was psyched to see the accordion of the bus expand and there were trains – so many trains below.

The conversation has haunted me in a way.  I wonder if I should have inserted myself? But what would I have said?

First, I’d like to think I’d say thank you for noticing the work we do.  It is work to do things with Grace.  There’s a level of planning for her that we don’t worry about with Graham.  There are things she has to have, and not just things we can pick up somewhere on the fairgrounds if we forget.  There are the hills we get to push her up. There’s the trying to find a space in a crowd of people for a girl in a wheelchair to be up front and see what you want her to see.  The crowd just doesn’t split when a wheelchair draws near.

Then I’d have confirmed we do take her to a few things we know she loves.  The DNR building has the fish.  We saw dancing at the Bill Riley talent show.  We hung out with Abby Brown at the PBS booth for just a few minutes.  There was music everywhere.  We ran into one of our favorite people, Hannah.  Plus she was just outside.  It’s summer.  Kids should be outside.  She also endures the things the rest of like!

As for his last comment, I don’t know what I would have said.  He’d touched on one of the great mysteries of Grace.  The amount she takes in and what she does with that input is hard to discern.  But here’s the thing, she didn’t complain.  She looked at the doll houses.  She watched the bands.  She slept a few minutes when Graham couldn’t decide what his one thing to do on the midway would be.  She watched the dancing.  She watched the people.

But there’s also this…we were there as a family.  We attended the state fair together.  Sure we split up at times because Grace can’t do the same things that Graham does.  For example, he likes to ride the skyglider.  Even if we did get Grace on there someone would still have to run her wheelchair up to the other end of the lift.  But we came together, left together, and hung out quite a bit together that day.  Family time is important.  Tradition is important.

I’m sure it would have been too much to tell him that there are also bits of grief mixed in for something seemingly just normal.  There were girls who look her age walking around the fair in groups together, no parents in sight.  There were girls her age in the talent show who I watched wondering about what could have been.  I looked at what girls Grace’s age were wearing and wondered if they would think it was strange if I asked them where they got their clothes.  I feel like Grace is in a bit of a fashion rut…out of kid sizes and the places I’ve relied on to clothe her!  (I find myself unsure where to shop for her now.  I want more than anything to keep her relevant.  She’s already got plenty, not in her favor I don’t need to set her up for anything based on how I dress her.)  Middle school looms and has me anxious for her, that’s a different blog I’m sure.  There are the looks.  The people who feel sorry for her.  The people who feel sorry for us.  The people who look away when you make eye contact.  There are the little kids who crane their necks backward to keep their eyes on her even as their parents holding their hands pull them forward.  There are families getting on the skyglider, families walking together hands linked, families who appear more nimble than ours.  The grief just lies on the edges, I’m aware of it, but on this day I could process it and keep going.

Finally, I’d say I’m grateful the man could acknowledge that he didn’t know what he didn’t know.  Some people count her out automatically with just one quick look.  I sometimes have said that it takes a special person to really see Grace.  I’m not so sure special is the right word-it’s not enough.  What I’ve learned is that it takes someone with an open mind, an open heart, and a willingness to take the time to see that matters.

It’s a bit strange to consider how many of the conversations like the one I heard that day about Grace I’ve missed as random people have encountered us.  As I finish writing I’d just encourage you to keep an open mind, and open heart, and be willing to see what you may not have experienced.

Joy

 

 

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I’m dreading the next six weeks with Grace. There are four specialty appointments. One of them with someone brand new. One of them may ask us to consider signing Grace up for surgery. There’s school conferences, which were awkward in the fall. There’s an IEP meeting. There’s a new communication device to trial.

I’m in San Antonio for a week of it.

There’s a ballet in there.

Easter will happen.

We’ll need to sign up for baseball.

It’s a lot. Some of it will be fun some of it will not.

As I think about this I keep remembering a blog I read awhile back by a special needs mom. Unfortunately I can’t find it now to give her credit. In her entry she focused on the helpers in her child’s life – her school aide in particular. She quoted Mr. Rogers. He said “When I was a boy and I would see scary things in the news, my mother would say to me, Look for the helpers. You will always find people who are helping.”

I know that some of my dread about the upcoming weeks is based in fear.

I was at dance with Grace today and I got to thinking some of my favorite helpers have come from dance.

Today I acted in Jill’s place. Serving as Grace’s balance – and providing her cues to shift her weight so that India and Alex could move her arms and legs. Jill has been helping Grace since she started ballet. It’s not an easy job. There are turns and jumps, and tapping backwards across the floor. Grace is stronger than she may appear and can resist and sometimes does resist these movements where she lacks control. Grace trusts Jill though and with her support has been able to experience dancing. And it’s not just that Jill helps when Grace is dancing. She helps get her inside, helps get her pants on if it’s cold outside, chases after Graham as he is ready to leave faster than Grace, and even loaned me her phone so I could take a few pictures of Grace dancing when I left mine at home.

Jacque and Chloe visited us one afternoon when they were both home on Christmas break a few months ago. They’d danced with Grace for three and a half years.   When they arrived I was in Graham’s room trying to wake him up from a nap. When I came out of his room they were all settled in with Grace – all three of them on our very hard floor – because that was where Grace was.

Hannah started dancing with Grace last spring. She quickly picked up on Grace and became the beginning of our DWOL generation 2 Team Grace. Hannah had a gentle way about her that Grace responded to. The first few weeks of dance last fall Hannah was the only member of Team Grace who’d had any experience with her. And the thing is, she totally handled it. She had Grace and they did their thing and there was no hesitation. Grace was able to shift right into dance mode because Hannah was there. Grace didn’t test Hannah – she was a known entity.

India joined us in the fall. She quickly learned to put Grace’s bib in her mouth and doesn’t shy away from goo. She had no fear about moving Grace’s arms and legs and putting her in the position to dance. She is consistent with Grace. Grace has learned that India is a force and I love that about India. India also has just embraced Grace where she is at in a way that’s really incredible.

Newest to the team is Alex. We’ve only been dancing with her a few weeks. She smiles at Grace and encourages her. Just today she noticed Grace helping her move her leg and said “Grace you’re doing it!” as she helped her get across the floor. She gave Grace credit for what she did when she herself was working very hard to allow Grace to do that part.

There are many other helpers at dance that I should write about too, but in an effort to keep this short-ish I’d like to mention one other helper- a non-dancer. (Ok non-ballet dancer…but a very good Mickey Mouse Clubhouse hot dog dancer) Graham.  Two weeks ago the four of us went to Planet Sub, one of our favorite lunch spots. Kevin, Grace, and I were all at counter ordering. While we were doing that Graham grabbed three bags of chips (one for him, one for me, and one for Kevin), claimed a table, and moved a chair out of the way so there’d be room for Grace’s wheelchair. He did it all without prompting. I was astounded. He sees more than I know.

The next six weeks will pass. There will be helpers to get us through. I’ll look for them.

Joy