Archives for posts with tag: grace

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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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

 

 

 

MK_PFTHPURPLEB1CHAR_20170227_7962999163.jpegWhen I was growing up my parents got us a Christmas ornament every year. It was a tradition. I love unpacking those ornaments each year- seeing my mom’s handwriting listing my name and the year I received the ornament on the boxes. When Kevin and I were married those were the only Christmas ornaments we had for our tree.

It’s a tradition I wanted to continue with my kids. For Grace’s first Christmas we’d been through a lot and I remember struggling to find an ornament that represented that time- something we’d want to celebrate and remember every year about baby Grace as we unpacked that ornament. Ultimately I settled on an ornament of Dumbo taking a bath in a tub. The note I wrote on the box was one sentence in length that says “Because Grace loves taking a tubby!” One year it was a Cinderella ornament that marked her invitation to a princess birthday party. The first year she rode a horse-it was a horse. The year we flew to see her Aunt Heather and Uncle Drue married in Virginia it was a plane. This Christmas it was a Rapunzel ornament that we bought her at Disney World when we visited.   Each year I write a note on the box about why we chose that ornament for the year.

My mom never wrote messages on the box about why she chose the ornament. She never had to because I know and I can tell the story. I started writing out the reasons on the ornaments we buy for our kids because I knew Grace wouldn’t be able to tell the story.

Special needs grief is a funny thing because this year as I was packing those ornaments carefully away I got to wondering if it mattered.   If anything happened to us would those ornaments really follow Grace? When she grows up and if she were to live apart from us would anyone read the notes to her? Put up the ornaments? Was I just creating more for Graham to have to go through someday?   Was it an unnecessary tradition? And in a larger sense if we are the sole keeper of Grace’s story and why she matters a few ornaments won’t begin to tell the story.

I feel different about Graham’s box. His ornaments are for him to have so that one day he can remember his growing up by going through a few ornaments that represent snapshots of what he liked and how he grew. I can picture him sharing them with his kids telling them about what Dad was like when he was little.

Ultimately Grace’s ornaments got packed in her box. I came to no conclusions other than it’s not a waste. If those ornaments are only ultimately for me then they are only ultimately for me. I chalked it up to grief sneaking up on me. Grief on a normal Sunday when we’d been to church, I was doing laundry, Grace was playing happily on the floor pulling every toy out of the basket in front of her, Graham and Kevin were out playing in the snow, and we were planning on Casey’s pizza for supper. It was grief that comes from the helplessness of not knowing. Grief because I’m not sure what to dream for Grace in the future. A grief that her experience will never be all that I dreamed for her.  And the thing is I have a level of acceptance about all of this. I do. I swear. But even with acceptance, there are moments that catch you off guard and then all you can do is take the time to acknowledge the grief, share it if you need to, process it until it’s processed and then keep going.   The ornaments are packed away but the work continues.

Joy