Once a year as I prepare to write this Christmas note I spend some time on my cell phone looking back at the pictures I’ve taken over the past year.
The usual things are there: Grace’s birthday, Graham in snow, Easter, last day of school, summer vacation, sparklers on the 4th of July, food, Farmer’s Day, the first day of school, pumpkin farm, Cub Scouts, Halloween, Grace dancing, Graham’s birthday, and Christmas.
There are some new things this year. Graham playing baseball. Graham Snapchats. Grace playing the tambourine in the band. Pictures from joke books Graham checked out from the library and remembered at the last minute that he hadn’t written down the jokes he wanted to remember.
There are some sad things. Pictures of goodbyes. Screenshots I’d grabbed of quotes that helped get through a hurt. Pictures of Grace on days she wasn’t feeling so well so we could show someone what was happening.
There are some things that made me mad. Other cars crowding the wheelchair van in a parking lot so it made it hard to get the ramp out and get Grace inside. A world that’s at times inaccessible for a kid in a wheelchair.
There are some pics that make me laugh. Graham’s snapchat as a bear with glasses, or as an orange, or with a mustache. Kevin pretending to sleep next to a sleeping statue made of legos. Grace looking forlorn but in such good spirits after being drenched at Niagara Falls. There’s a pic of me standing on a clear platform high above the earth holding onto the only person who could get me out there – Graham.
Any picture of Kevin and our kids makes my heart swell.
The funny thing is before I took the time to look back I was feeling a little bit like I didn’t have much good news to share. When we plugged in the Christmas tree this year and the top part didn’t light up I found myself crushed. It just felt like a dig from the universe that we didn’t really need. This year the realities of Grace have felt heavier to bear. She’s heavier. Her equipment is bigger. The planning for her future after she’s 21 has started 8 years before she’ll be there. It sounds bleak and I feel powerless to do anything about it. We hosted a meeting in our home just a few weeks ago where together with a woman we’ve never met before and most likely will never meet again we detailed all that is “wrong” with Grace so that we can keep the services that keep our family going. Grace got home in the last few minutes of the woman’s visit. She looked at her for two minutes and said that obviously Grace needed the level of care we said she did. Somehow that hurt.
On the flip side – that tambourine I mentioned earlier. Grace was actually allowed to play it during a band concert. A band concert where they saved three seats in the front of a very crowded lunchroom/auditorium on the chance that Grace would have a seizure during the concert and that Kevin or I would need to get to her. She played the tambourine during that concert when the tambourine shouldn’t have been playing. No-one stopped her. At the same time that makes my heart glad it also very quickly makes me wonder at what point that will stop. I decided, for now, I’m just grateful she had the chance and took it.
Graham and I decorated the tree this year. We added a shiny garland that Grace had picked out at a giant Christmas store we visited on summer vacation. We put on all the ornaments – the homemade ones, the ones Graham made at daycare, the ones we’ve made at church, the soft ones that we bought so that if Grace loved on the tree too much nothing would be broken. And when we stepped back Graham commented that the tree looked so good you couldn’t even tell that the lights weren’t lit at the top.
The thing is amidst all the hard parts of 2019 there have been way more moments of things turning out fantastic. Way more pictures and memories make me smile then make me sad.
We look forward to 2020. There will be basketball games and dance classes coming up soon. We’re planning a summer vacation to Tennessee. There are lego sets to put together. Batman is on at 6 am on Saturday and Sunday mornings. Grace is getting new vocabulary on her talker. Our world is getting bigger. We have people. It’s going to be good.
We wish you all the best for 2020 and plenty of shiny garland to cover any lights that go out! Thank you so much for checking in on us.
Merry Christmas and Happy New Year!
Kevin, Joy, Grace, and Graham