Archives for the month of: September, 2014

Day Out With Thomas-1

Last weekend we took Grace and Graham to see Thomas the Tank Engine in Boone. As we pulled into the parking lot Graham jumped around in his car seat and said “I so excited!” It was so sweet. I love to see his excitement. It’s contagious.

There was a tent full of train tables. As I entered with Grace in her wheelchair one lady got up, took a look at us, and gently shifted a train table just enough so that Grace could get through. I smiled at her in thanks. We pulled off to the side of the tent and I fed Grace while Graham played and Kevin supervised Graham’s sharing of train cars. I got a few looks as I was sitting there feeding Grace. I got the “oh that’s sad” looks, the “I’m so glad that’s not me” looks the “you are in the way” looks and the “isn’t that sweet” looks.

That was the first stop.

We tried to teach Graham how to stick his head in those cut-outs (that in this case magically make you a train engineer). We met Sir Topham Hatt. We got our pictures taken with Thomas. You can tell that Grace was less than thrilled…in the pictures her head is way off to the side. She’s not even pretending to sit up and be excited. One of things we’d talked about while I’d been feeding her is that sometimes a big sister has to do things because her little brother wants to. Obviously that parenting lesson went well!

Then we got to ride the train. On the train a man was going around taking pictures. He took a picture of our family. He handed Kevin the slip with the number and we didn’t think more about it. Grace snuggled in at my side. Graham tried to hang his whole self out the train window and played color trivia with all of the various friends of Thomas …we have a lot of friends to learn!

As we were about to finish a woman approached us and asked if we were going to buy our family picture. We responded we didn’t know if we would and she said that she would like to–That they try to do something every day. She said she imagined that we don’t have many pictures of the four of us, because usually someone has to take the picture. (She was right- but there is something uncomfortable about taking help..so we half –heartedly agreed). Then we got off the train and Kevin and Graham headed off to ride the trolley while Grace and I set off to retrieve her wheelchair and get her some meds. The woman approached me said “I really want to do this…it was so good that you could be here today.” She handed me the cash for the picture apologizing that she was $1 short. I thanked her.   I was putting Grace into her chair a few minutes later when she brought me the last $1. “I really want to do the whole thing” she told me. I thanked her again.

We got the family picture before we left. Our day out with Thomas forever recorded for us to remember.  We are doing life as a family, one child in the special needs world, one child out – it was a wonderful gift for that woman to acknowledge our family in such a kind way.

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There is something about parenting Grace that makes me second-guess (and third and fourth guess) everything about her. Everything we sign her up for. Every therapy we send her to. Every medicine we give her. Every advocating attempt we make. Every expectation we have of school, church, family, and friends.

So much goes into every decision. It is agonizing.

I think I know what I want – but there are so many times when I get no response, a half-hearted response, or placating response where I just feel like the bottom drops out on all resolve I had towards the issue. I question if I’m over-reacting. I question if it’s a fair request. I question how I could have communicated better.

Being Grace’s mom just empties me to the point where I feel like I have nothing left.

There is no frame of reference for this.

No black and white.

No way to know other than to trust Kevin’s and my combined gut. And frankly we’ve been wrong at times. We’ve also under-requested and over-expected.

But the part of me that’s left – my dad tells me there’s always 25% left – is a question over and over. The question I want to ask of people who give me those responses is this…”What if she were yours?”

If she were yours, and couldn’t talk to you, what would you want to know about her day?

If she were yours and someone delivered the same message to you that you just delivered to me would you be satisfied?

If she were yours what desires would you have for her?

If she were yours would you be upset?

But the thing about the question that makes it powerful for me – but not so powerful for them maybe is that she’s not theirs. They don’t know.

Maybe its unfair for me to even think that someone could understand. But it kind of goes back to the whole idea of walking a mile in another person’s shoes that I wish the world did more of.

Our combined gut will continue to rule. We will continue to make it up as we go along. Second-guessing and all. Sometimes we are right.