Two years ago today, I found an embroidery hoop, some fabric from a scrap bag I bought at Silver Dollar City, and an old baby shirt. And I turned it into wall art.
Which I never ended up putting on the wall. It’s still behind the girls’ rocking chair. With four other things I meant to hang on that wall. I just never finished the project. I was waiting on a friend to make a canvas for me. And then life kept happening.
Two years have rushed by. In those years, Bess and Graham have reached all their milestones plus some. Adelaide has not.
When Adelaide was a baby and not reaching milestones, they sent us off to get an MRI. I remember begging God for hours, “Please let her sit up so we can cancel this MRI. Or make her MRI normal.” Neither happened.
Adelaide didn’t sit until she was much older. And her MRIs showed a brain that was severely malformed. Six malformations. One of them, colpocephaly, is pretty rare. There are about 150 people in our online support group.
Her second MRI came during a trip to Kansas City. Our second neurologist. And we heard ‘polymicrogyria’ for the first time. I eventually joined an online support group. It was reassuring to find other families with these long words typed into longer reports. Our rare kids reaching milestones at different times, so we can rejoice together over the most mundane things.
Bob bought the shirt for Adelaide a few months before the trip. Said the girl on the shirt had a big head like Addie, and they were both adorable. We were checking on Adelaide’s mega cisterna magna, so the shirt seemed like a perfect match.
I don’t keep lots of things. Our house is small, and I tend to fill it with things we need in the moment. And books. Books got me through my abuse-filled childhood. But I kept this shirt, and I turned it into something else. Something I was proud of.
Two years later, it’s still not on the wall. But that’s the beauty of it. In its own time, it will get there. Along with a few other things. It represents Adelaide’s journey…she operates on her own timeline. Meets milestones when it suits her. She stood up on her last day of preschool. They worked on that skill for almost 2 years. And she pulled it out of her hat on the last day. It’s so Adelaide.
And it was so Bob to buy that shirt for Adelaide. Until he could no longer talk, Bob asked about his Adelaide. He fiercely loved all his grandchildren, peppered across the United States. He had special nicknames for each one. Inside jokes. He called them, video messaged them, and bought them weird/overpriced/silly gifts. He talked about his grandkids to everyone. He was a proud Papa. Very proud. And he was proud of every milestone Adelaide achieved. And if she didn’t achieve something: “Who cares? Addie can do whatever the hell she wants!” He had a soft spot for her.
And it’s so me to have so many unfinished projects. It’s been 4+ years, and I still haven’t finished the girls’ room. Now we’re trying to build a special bed for Adelaide, and wall art seems less important. But I’ll still put it up at some point. I’m taking my time. And looking forward to Dave completing their bookshelves, so I can fill them with books Adelaide may never be able to read. Or maybe she will. You never know with her. She’s never seen those MRIs, so she doesn’t realize she’s done more than they said she’d ever do.