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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

 

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2B692091-A0AD-4844-AFD3-6755D0873689Summer has officially begun. Grace and Graham were done with school last Wednesday. I’ve unpacked a lot of the school stuff. Communication book, drumsticks, catheters, formula, diapers and unused pencils for Grace. For Graham a video showing kindergarten highlights, and so much of evidence of all he learned over the last year. We puzzled through some of the spellings in his work and marveled at his drawings, letters, and numbers. He learned so much in kindergarten!

I’d say their only year together in the same school turned out to be a success. Both of Grace’s teachers mentioned that Graham frequently sought them out to say hello. On the day he used his dragon tracks to be principal for a half a day he came home and reported to us that he’d been able to choose some classrooms to go to with the principal. He went to his own kindergarten room, but he also asked to go to Grace’s general ed room. When Grace wasn’t in that room the principal took him to the special ed room. And when she wasn’t there they went to the band room where Grace’s class was hanging out because the air conditioning in the special ed room was broken. I thought it was very cool that Graham used the opportunity to look for Grace.

For her part as a 5th grader, Grace got the chance to make afternoon deliveries to all classrooms. Evidently, they frequently peeked in on Graham.

There was one day this year when I dropped Grace off at school after therapy and was stopped by the school nurse asking for me to come to her office as soon as I had Grace settled. And then she winked at me. After another trip to the van to get the rest of Grace’s stuff and a kiss on her cheek goodbye, I reported to the nurse’s office to find Graham there. His stomach was hurting. But after a few hugs and a snuggle, he skipped off to kindergarten. I waited for the nurse to call me that day but she never did. He was fine. I was so grateful to have had the chance to be there for both of them that morning.

On Wednesday I attended the end of the year assembly. After songs to make me cry the siblings of 5th graders were offered a chance to line up in the middle of the gym. I saw Graham’s kindergarten teacher help him get into place. Once everyone was lined up the fifth graders “left the building” through a tunnel of high fives. This is what I’ve come to understand is the 5th grade clap out. Grace went second. It all happened so fast I got zero pictures. Graham told me later he got tons of high fives but none from Grace or her nurse Garrett. He was a little sad about it –but glad he got to be right up front.

As I left the gym after her in a hurry I walked by and made eye contact with Grace’s third-grade teacher and then her kindergarten teacher. Obviously tearful I only managed quick greetings–torn between getting to my girl and telling them one last time how much I was thankful for them I ended up following my girl.

And when I got to Grace her nurse and her aide were in hurry to get her water and get her cathed and get her to the park.   This huge moment was done. Life was going on. I walked out of the building crying and cried most of the way home. I swear a few trees cried with me as the wind blew and small leaves blew down around me.

Grace was done with the school she’d been at six years. “We have them the longest” her special ed teacher had said when we had Grace’s transition meeting to middle school. “It makes it harder to let them go” the speech therapist continued.

I’d been up to 11 the night before her last day trying to find words to thank so many people on Grace’s team the past six years. People who have loved her, cared for her, spoken for her, assured she wasn’t passed over. They’ve been with her literally half of her life. How do you thank people for that? And the thing is…the thing that makes me feel so helpless is that I imagine I only have an inkling of what she experienced there. That longing for communication, for knowing what it meant for Grace to be loved by them in what I’m sure were a million small and big ways escape me.   I’m sure that I’m not yet done processing what it means for Grace to be moving on from them. I’m sure there is more crying in my future on the topic.

But to bring this to an end I’d just say that on their last day of school in the same building I missed the opportunity to get a picture of them together. It didn’t work in the morning because they don’t get ready at the same time. After school Grace had a wheelchair appointment, Graham had taekwondo and that was that.

I’m so grateful they had their year- that they experienced sharing in this way this one time. I’m grateful for all the people who were in each of their stories their kindergarten and fifth-grade years.

And now we begin summer stories…

Joy

IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

86BA8EED-38DB-42A3-905C-85390F56C695When Grace was two and we were much newer at special needs parenting we grappled with this feeling of always being vulnerable simply because Grace was Grace. We could be having a great day but find ourselves quickly feeling miserable, or angry, or scared, or frustrated by big or little things. It could be the stare of another child. It could be a phone call from a doctor with lab test results that needed addressing. It could be someone at work complaining about their healthy kid throwing a fit at Target and wishing with all your might that Grace would throw a fit at Target. It could be dropping all the plans you’d made for something fun because Grace was hospitalized.

Looking back we were struggling against not being in control and feelings of helplessness. There were people in our life at that time (some of them are still around) who helped us in big and in small ways. Sometimes honestly all it took to feel better was for someone to say something kind. For someone to want to hold Grace. For someone to offer an idea we could run with, a different perspective on Grace’s abilities, or even just to convey they thought Kevin and I were doing right by Grace.

At some point in her second year, we came up with the idea of the scarf to try and explain our experience as special needs parents.

Here’s how we explained it to ourselves.   Being a special needs parent is like being outside in winter on an especially cold and windy day. You aren’t there unprotected from the cold. You have boots, a warm coat, gloves, and a hat…you did what you needed to do to go outside. But somehow as you are out there walking, thinking you are all bundled up, cold air gets in under your coat and you are beyond freezing. A scarf would have prevented that cold air from sneaking in.

In our lives, we have to depend on other people to play the role of the scarf for us. To think that we can do it all just the two of us is too much.

So we played with the idea for a few years, it just kept coming back up. Then at some point we decided that sometimes it would be good to give an actual scarf to the people who are our metaphorical scarves. We made a card with an explanation. On the back of the card we make it all official using the tagline “a pink helmet production”. There’s a picture of Grace and Hoover that appears above the tagline. We take a picture of Grace wearing the scarf to put in the card. We tie the scarf with pink ribbon. And then we get it to the person. We don’t have strict criteria for receipt. And honestly, there are people who deserve one that we haven’t given one to.

I’m working on four scarf cards tonight.   Four women who have been a scarf for us and should know how grateful we are for the role they have played in Grace and our lives. They all brought warmth in different ways.   Our story isn’t the same without them. In a lot of ways a scarf is a small token of appreciation but hopefully, it is something that will impress upon them our gratitude.

It’s amazing to me that a metaphor we came up with when Grace was two hangs on today now that she’s 12. I also don’t believe we’ll ever outgrow it. What was true then remains true now. We are vulnerable simply because Grace is Grace and we will always need people to come alongside us in big and small ways so Grace can be Grace.

Joy

 

 

 

12262Grace turned 12 last weekend.

Twelve.

I can’t fathom how time has moved both that fast and that slow.

Grace’s birthday usually finds me a little down. It is hard to celebrate what is while also very aware of what could have been. One of her presents was a very large Sofia the First balloon. I walked out of the store feeling half excited because I knew she’d love it and half sad because her likes aren’t more age appropriate. Having said that I also feel like I should state for the record my sadness doesn’t take anything away from my love for Grace. My love for her is big, life-changing and powerful.

We took Grace to see Stomp for her birthday. She loved it. I did too. There was so much energy on the stage. So much non-verbal communication flowing between the performers and out to the audience. They did it all using objects that were not made to be musical. (Plastic Target sacks and newspapers became musical instruments at times.)

There was a point in the show when all the performers were standing in a line across the front of the stage using only lighters (clicks and flames) to deliver that section of the performance. All the lights were out- it was pitch black. Accompanying Grace in her wheelchair we were in the very front row so we could see the concentration on the performers’ faces as they clicked and burned their way through the piece. It was phenomenal to see. Being able to see it added something to the performance for me.   The look of their combined work was very precise. Small lights in a large dark room danced across the stage. The concentration on each of their faces showed their determination to make it happen.   With all that focus they made it look effortless. It seemed shorter in length than some of the other pieces but I think it was my favorite piece.

It was understated but effective.

It was potentially easy to overlook as a person relives the show because it wasn’t loud or high energy.

It was a little dangerous to learn I’m sure.

Mistakes could be easily seen by a large group of people. There was no way to hide them.

Each performer had to do the work to make it happen.

I think Grace is a bit understated but worthy. She’s easy to miss because she’s quiet and doesn’t show a lot of emotion. Loving her is dangerous in that all parenting takes courage, but special needs parenting perhaps takes a bit more daring. Parenting Grace takes place in front of a huge audience, there are many people who weigh in, many people to judge, many people to bless her, and many who help determine her future.   We are working to make sure all their input comes together and results in a growing and thriving Grace.   We are doing it all with the tools that we have. We are making our own music. Grace loves music. She can love Sofia the First and Stomp!

So here’s to her 12th year! It will be an adventure.

Joy