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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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IMG-3938We were in my hometown over the weekend for Farmer’s Day.  We arrived Friday afternoon and made our way downtown to find my Dad.  I knew just where he would be he’s there every Farmer’s Day weekend.  My godparents were there and I loved seeing both of them.  We got supper at a local booth, watched some singing, Graham wrangled two carnival games out of us and won a small stuffed shark.  Then it was time to go back to my parent’s house.  One of the carnival workers stopped us as we were walking back and said he wanted to give something to Grace.  He proceeded to pull down from the booth a large pink unicorn with lots of sparkles.  It was perfect for Grace, I wondered how he could just look at her and know!  I asked if he was sure, not quite believing he would just give away such a large stuffed animal.  We held it in front of Grace, she totally checked it out, and we thanked him.  Graham volunteered to carry it back to my mom and dad’s house.  This from a boy who 30 seconds earlier was complaining he was too tired to make the walk.

As we walked Kevin and Grace got further and further ahead of us.  I considered asking a question all while knowing I would be wandering into potentially dangerous territory but Graham had been oohing and ahhing over the unicorn.  He had made no comparison to the much smaller and very plain in comparison shark he’d had to work to win.  I wondered why.

“Why do you think that man gave the unicorn to Grace?” I asked.

“Because she’s in a wheelchair.” He said simply.

“Is that the only reason? I asked prodding further.

“She can’t play the games Mom.” End of conversation.

He started talking about other things. But then a few minutes later said, “That was really nice of that man to give this unicorn to Grace.” He carried the unicorn happily all the way. He’d just taken it all in stride.

The next day he was not near as generous with his sister. I was doing something with her and he wanted me to be with him. Now that he’s learned to write he began to write me notes and pass them to me as I fed Grace. One read “Stop Now.” The other just read “No”. Not being able to leave her – because sometimes I just can’t leave her – and him needing or wanting attention from me that I can’t give makes me feel the heavy weight of mom guilt like few other things.

Later that day there was a point when I had to bow out of the fun because Grace needed some time out of her chair, air conditioning, and rest. Graham had a choice at this point. He could either come with me and Grace or he could stay downtown riding rides with his aunt, uncle, and cousins.  I was not surprised in the least when he chose them.  Although I knew he’d be fine part of me hated to leave him, hated to miss him experiencing Farmer’s Day and his cousins, and part of me felt guilty because he’s my responsibility. Watching Graham with his cousins, the banter, the love, even the arguing is sad in a way and fills me with a regret that he doesn’t have typical siblings but I also love to see him join in the fray and I’m so grateful for how my brother’s family embraces him.

There’s a part of me that hates that this is his reality.  It’s not always people giving us pink unicorns.  There aren’t always cousins to ease that we are choosing her over him.  But it is our reality.  We all make sacrifices.  I can only hope that he knows how much he is loved and continue to embrace the pink unicorn moments.  And for those times when he feels he’s being overlooked, I have to hope he can see that in a family you can’t always be first but by no means does that mean you are unloved.

Joy

 

“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past inDSC00327 the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to.   We had him because our family didn’t feel complete – we’d always talked about having two kids.   Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him.  But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

We shall see!

Joy

 

Around Christmas time Kevin and I decided that we were going to take Grace and Graham to Disney World. It was pricey, it was intimidating, we were experiencing much unrest about the world, but it was time for us to do something fun. We quietly planned, telling only a few people initially. In some ways, it felt irresponsible. We should have been saving those vacation hours because you never know with Grace. We should have been saving the money because you never know with politics. But truth be told we always feel like we play it safe. Our family deserved a chance to try something different.

Graham was ecstatic. Grace quietly listened to our planning knowing long before her brother that this was in the works. Oh my goodness, we planned. Kevin searched websites and mastered the Disney app. I bought a book and searched Pinterest. We borrowed suitcases from my parents.   Kevin reached out to Kamp-Rite the folks who make the tent Grace sleeps in when we travel with questions about a new compact version they have that folds up smaller. Someone there took a minute to click on the link to our blog in Kevin’s email signature. Low and behold they sent us a traveling tent as a gift. Their messages conveyed delight for our family. Their only request was that we send them a pic of us at Disney World when we returned. We were humbled and grateful and in the end sent them several pictures of our trip.

I could barely sleep the night before our trip. I was so anxious. Could we do this? Would it be fun? Could we meet both Grace and Graham’s needs?  We’d be hours away from the team that holds Grace together.

We flew out of Des Moines on a Thursday afternoon and arrived on a bus at our Disney Resort a little after 8 pm that night. We found our room, got food, and watched fireworks before we went to bed that night.

We couldn’t get going as fast as we’d wanted to our first full day there. We finally made it to the park but we were not aware of the multiple steps of security and of course got in line behind a family that just couldn’t make their tickets on their phone work. We made it to our scheduled first stop – a meet the princess with Elena and Cinderella barely on time. As we made it into the room with the two princesses we found ourselves next in line and Grace having a seizure. Kevin was so calm about it asking the family behind us to go ahead. The Disney workers were a bit taken aback by this but quickly recovered when I explained that we just wanted a little more time for Grace to get through her seizure. At some point, the doors were closed and our family – just the four of us- were in a room all by ourselves with the princesses, photographers, and their helpers. In no way did I feel rushed.  We were invited to learn magic and sing along with the music in Avalor and offered carriage rides with Cinderella and the Prince. Cinderella talked to Graham prince lessons but he wasn’t so sure about that.   There were pictures taken with each princess and pictures of all of us together.   As we exited through the Cinderella/Elena gift shop my eyes filled with tears and I wasn’t so sure that I wasn’t just going to sit down and cry. Those minutes, that interaction, somehow they had made all the worry, all the planning, worth it.   We could have gone home then and I would have raved about the experience. But I’m glad we didn’t.

Over the next four days, we did our best to take advantage of all the things we thought our kids would like. Beauty and the Beast, Finding Nemo, the Little Mermaid, Frozen, Jake the Pirate, Snow White, Sofia the First, Winnie the Pooh, Peter Pan, race cars, a safari, and the Swiss Family Robinson tree house. We visited Epcot, the Magic Kingdom, Animal Kingdom, and Hollywood Studios. Graham showed his first interest in Star Wars watching Chewbacca, Storm Troopers, and Darth Vader on stage. We had character dinners and met several of the princesses.   We watched Graham dance with Pluto. We watched Grace light up from pixie dust as we approached Tinkerbell and saw her longingly look towards Rapunzel’s hair. We all rode the Dumbo ride and It’s a Small World. We swam in the pool at the resort.  There was a single duck who frequently joined us in the pool. We rode buses, the monorail, and boats. We saw fireworks sitting on a boat out in the water.

Graham declared on a daily basis “wouldn’t in be fun if we lived at Disney?” He commonly expressed that things were awesome or amazing. Grace’s communication device didn’t work too well in the bright Florida sun, but we caught her smiling more than she normally does and had to watch her hands carefully as she encountered characters in beautiful dresses.

As with all great vacations, there have to be things that don’t go quite the way you expect. We had several mishaps where the monorail stopped working temporarily. We started joking that there is regular time, Grace time, and Disney time. We were amazed by how long we could be eating a meal waiting for the various characters to stop by. Bedtime was pretty late a few nights.

I worried about the disability/accessibility aspect of our trip. I shouldn’t have worried Disney was very accommodating. Apart from having to wait one time for the next boat, they were always ready for a wheelchair. We met other families like ours and had a few minutes to talk about wheelchairs and meds as we waited for the monorail to get fixed. There were “normal” families who went out of their way to approach Grace, help flag down a bus driver, or hold Graham’s Winnie the Pooh when it became apparent that our hands were full.   The one thing I did struggle with was the looks we sometimes got from families as we were loaded onto boats, buses, and monorails first. Yes, we were first, but we were always last getting off. I wondered to myself if they noticed that.

We’ve been home a few days now. We are back in the regular world. I miss the weather in Florida. I miss the attention to detail. I miss feeling like my primary responsibility is to just hang out with my family and experience magic.

But the thing is now I know the magic exists. I know that our family can thrive in a situation that is just about fun. The Disney magic gave us some confidence and some beautiful memories. Kevin has already begun planning our next vacation.

Joy

IMG_3496Today Grace was transferred off of the PICU to a general floor. While she no longer requires the care of the PICU staff it should be a good thing to celebrate but it was more of an upside down, crazy train commotion than it really seemed that it needed to be. We have found ourselves training nursing staff of Grace’s seizure types, lobbying for a seizure bed that had to be trucked in from Iowa City and working out all the kinks in medication protocols. It was far from smooth transfer to just one floor down. Thankfully both the PICU doctor and resident have personally checked on us to help smooth out the wrinkles. On the plus side, Grace now has a room that is technically a double, which is nice since Grace does not pack light.

We have a new plan worked out and if everything goes to schedule Grace will be discharged Thursday or Friday.

Graham has been a real trooper through all of this; we don’t give him enough credit. For the past two and a half weeks, his life and day-to-day routines have been thrown out the window and he just wants a regular “Mommy and Daddy Day with no hospitals or surgeries” as he puts it. We are rotating every other night at the hospital so he has contact with one of us every other night. He has requested several times to come to the hospital but in general, I think he likes Minnesota hospital stays better since it involves staying in a hotel with a pool and a shuttle bus ride to and from the hotel and hospital.

It’s interesting how Graham interprets being in a hospital, for him, there are toy rooms, books, and even an outside play areas. Today we pressed the nurse call button to request some new bedding for Grace while we were finishing up some of her cares. When a voice came over the intercom, Joy asked for some bedding and then Graham shouted out “and some cookies too!”

Kevin