After driving to Detroit for some Detroit-style pizza at Grandma Bob’s and some pancakes the size of dinner plates at the Hudson cafe, we flew to Seattle to be ready for the 1p36 conference. This was the first year we arrived the day before the conference started, and it was glorious to be so relaxed about time! It did mean a longer wait for the coveted new conference t-shirt. Sarah survived the wait and was the first in line to check in.
The 1p36 conference is for families where at least one member of the family shares Sarah’s diagnosis. The location changes each year, as does the t-shirt design. While there is a Facebook community for daily questions, answers, support, and connection, the conferences take it all to the next level. To come to a place where we need offer no explanation about Sarah, where we need fear no meltdowns (and usually there aren’t any), where she can have freedom to roam in the hotel because most people know her, and where she will get her next favorite t-shirt, is truly the best. Yes, I know she always loves a new t-shirt, but she also has favorites that she wears until they get pills on the fabric, and the 1p36 shirts are those shirts.
Some families return every year, some are new, and some can only come some of the time, so the mix is always unique. Each year, I get a bit more comfortable being myself, Amy makes new sibling connections, and Carl gets to know some of the other parents better. Amy made two great friends this year and they became a nearly inseparable trio. We learn so much from talking to the other families and from attending talks given by various doctors and specialists.
Sarah loved hanging out in the lobby watching people come and go. Amy created a game on our first night by going out the revolving door and coming in again as if just arriving, greeting Sarah with arms wide open. Sarah cracked up, and they went around and around welcoming each other.
Sarah also loved riding the elevator and would do so for hours. It was the sort that you could see out of, so like a gentle carnival ride. Probably everyone in the hotel got to ride in the elevator with Sarah.
One of the highlights of the conference was an adaptive bike experience. When I saw the event on the schedule I had my doubts about what Sarah would get from it since she can already ride a non-adaptive bike. I was so wrong! Sarah loved riding one of the tricycles! She was glowing from ear to ear, looking around with poise and awareness, pedaling so fast her knees were a blur, but also braking appropriately when needed. She was doing loop after loop in the parking lot course that was up and down a slight hill. I haven’t seen such joy in her biking self in ages. It made me rethink my own biking status and needs so that maybe I could have such joy too. Seeing so many people with varying abilities biking got me teary, filling my heart to the brim.
Another highlight was watching the siblings talk together about what it is like to be in that role. That was heart filling too. These days I feel heart-ful and teary often. I’m not sure if that is because so many things are that moving or because of perimenopause or because I’m still moving through grief or all of the above. Probably all of the above.
Last night the conference wrapped up with a pajama dance party. Sarah was in her watermelon pajama shorts and Spider-Man slippers. Amy and I sported our matching goose foot slippers, with the extra hilarity of me having the smaller pair. Carl looked absolutely fabulous in a nightshirt and nightcap, ready to step into A Christmas Carol or The Night Before Christmas.
If any of you are familiar with Knuffle Bunny Free by Mo Willems you will understand the trouble we are now experiencing. Somehow, despite checks by Amy and Carl, the unthinkable has happened. Amy’s most beloved bobcat stuffed animal did not make it from Detroit to Seattle. We filed reports with the airports and airline. We think she must have been left on the plane. This is impossible and heartbreaking and we can only hope and pray and believe she will somehow make it back to us. So that you can add your visualization to Amy being reunited, here is her bobcat.
May we all greet our minutes as gleefully as Sarah and Amy met each other around the revolving door.
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