A Year in Pictures – 2017

I 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

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Being Seen

Last weekend we took Grace and Graham to the Wellmark Family Series show The Cat In the Hat at the Civic Center.  We love the family series – we’ve been taking Grace for several years.  This is Graham’s second season.  The shows are an hour long –it’s $10 a ticket – and it’s all kids so you don’t have to worry too much about what random talking/noise-making your child does in the middle of a performance.

In the hour before each show the lobby is packed with crafts, music, and other activities for kids to do.  We’ve tried a few times with Grace but it’s crowded, difficult to get her through in her wheelchair, and the set up just doesn’t allow for her to participate as much as she would like.  We usually just skip the activities and go to the show because it’s frustrating to not be able to navigate with her and have her be able to be engaged.  Graham however has become wise to the fact that he is missing the activities.  We do have the option of taking two cars. (Which we’ve done.)  One of us going first to do the activities with Graham and the other following with Grace closer to show time, but I just didn’t want to do that on Saturday- I wanted us to go as a family.

So we got there and I tried to get Grace up to an art project table, but there were just too many people, and people didn’t really move.   (I totally get it…everyone there is trying to get their kid to the activities).

This time someone from the Civic Center (Susan) saw me walk away after trying and approached me.  She told me there were animals on the other side if Grace would want to see them.  I said “that’s ok, it’s hard to get her through all the people.” She answered, “I could help you.” I said “no thank you, I’m just going to feed her so we are ready for the show”.  Grace and I went to sit in the front window so she could watch cars drive by and I could feed her lunch.  A few minutes later Susan came back and asked me if she could get someone to bring a craft over to Grace.  I agreed.  She arranged for one of the Wellmark volunteers (Kayla) to bring over kite making supplies for Grace.  Kayla did.  She asked how Grace would like to decorate it. She made a few trips back to the crowded tables to get what we needed.  She helped hold Grace’s feeding tube so I could put the kite together with Grace.  She tied the ribbon on the kite.  She waited beside us when Susan came back with a woman from the zoo (I did not catch her name).  The woman from the zoo had brought a duck (Fiona, I believe) over to see Grace.  Grace wasn’t too sure about Fiona – but she checked her out.  Because of her lack of big emotion it was very hard to see that she did really give Fiona a good look – I think the three women around us were waiting for her to smile, which she didn’t of course.  But after she checked out Fiona I thanked the woman from the zoo and Fiona for coming to visit.  Kayla helped us finish the kite and we were set for the show.  I thanked Kayla and Susan.  Grace flung the kite around and tried to chew it as we waited for Kevin and Graham so we could all go in the theater.

I was totally tickled with the experience.  Grace really watched the Cat in the Hat.  She’d done the preshow activities.  Graham liked the show and had a fish puppet and a kite that he’d made.  He was happy.  We all got to talk about it together on the way home.

Those women saw Grace that day and wanted her to be able to participate fully.  I am crazy grateful.

Joy