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

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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

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

FullSizeRenderI was having trouble starting this Christmas letter until I got on my phone and scrolled back through the pictures I’ve taken over the last year. I’ve taken so many pictures – a full year of little moments, big things, memories that make me laugh, and memories that make me tear up.

Graham’s love of sunglasses and selfies is in there. There are pictures of donuts and legos. There are pictures of his last days at Childserve’s Daycare where he was loved well for over five years. There are pictures of his first day of kindergarten.   There are pictures of him at taekwondo. I even have a screenshot of directions for tying a taekwondo belt.

Grace is also a fan of the selfie – but most times I’m in the picture with her to help her take the shot. There are so many pictures of Grace dancing. There are pictures of her swinging. Pictures in waiting rooms and doctor’s offices abound. There’s her first day of 5th-grade picture. I had her in a shirt that in pink shiny lettering said “This girl can” for that day. There are also a few shots of her in her “Nevertheless She Persisted” shirt. Finally, there are lots of shots of baseball. Her last game she played with either Kevin or I holding an umbrella over her head because it was raining – but she played anyway.

Kevin appears in pictures of baking with Graham, snuggling with either kid, flying kites at Johnston’s Kite Festival, sitting behind the steering wheel of the van, and across the table from me when we have had a chance to go to dinner just the two of us.

I’m usually paired with Grace or Graham in the pictures of me. There are a few from work. There are a few early morning shots that Graham took – that even though I don’t like I just can’t bring myself to delete.

What strikes me most in reviewing the pictures is that we really did life this year as a family. We went to Disneyworld-which was Amazing! (I have a crazy number of pictures from those days.) We also accomplished many of our summer bucket list items. We saw fireworks at the Golden Castle (that’s what Graham calls the state capitol building) for the Fourth of July. We had lemonade at Farmer’s Day. We went miniature golfing. We went to the Pappajohn Sculpture Park. We went to the zoo. We were at the State Fair. We went to family camp. We went on a vacation to Duluth Minnesota. We went to Reiman Gardens. We swung in the backyard and had one officially documented picnic. We stayed in a hotel or two. This fall we were at Living History Farms, we had family pictures taken, and we went to see Disney on Ice.

What all that tells me is that we are finding some balance between feeling limited and just going for it. We are keeping Grace both in the world and in activities that allow her to excel that are more specialized. I can see that Graham had 1:1 time with me – and I know that he did with Kevin. The two of them take Saturday morning trips to the Farmer’s Market that are well documented on Kevin’s phone.

I can also see our kids grow, which is ultimately their job.

We plan to spend the holiday season celebrating together – with a few movies, some cousins, some legos, and Disney princess dolls thrown in. I’m sure I’ll take lots of pictures.

Thanks to those of you who check in on us. Those of you who laugh and cry with us. We appreciate you.

From all of us to you – Merry Christmas!

Joy