Sarah Rise Weekly Updates

Last Sunday when we got home from a week away, Sarah went inside while Carl and I sat in the car summoning the energy to unload and get ready for the week. Sarah emerged carrying a box and saying it was heavy. Carl met her and took the box. I was busy on my phone…. Read more »

Polar bears don’t get headaches. Or, if they do, please don’t tell me. I have still been getting headaches, as if I hadn’t done my rescue remedies at all. Maybe somehow they only work if I suffer for several weeks first? Not only have I still been getting cluster headaches, but my hope and faith… Read more »

Two nights ago I pulled an all-nighter, but not for lack of trying to sleep. It was a new and weird experience. To back up for context… I haven’t had any cluster headaches in two years (thanks to medication), but one trigger for a cluster to start is high altitude. I have been lucky that… Read more »

What a time we have had! A little over a week ago, we got a ride from Sarah’s favorite taxi driver to the airport, ready to board a plane to Chicago for Higgy Con, a conference for kids with scoliosis. We were decked out in custom-made shirts that say “I’ve got your back Amy” for… Read more »

Last Sunday we had an experience where “all’s well that ends well” but it was scary for a few moments. After a wonderful day playing in the water at Sandcastle (a local water amusement park), we lost Sarah. One minute Carl and I were standing and talking while Sarah was in our view… we had… Read more »

Throughout Sarah’s life there have been many times when my mom has reminded me that I get to have some agency and power over my life. This may seem obvious and it may seem that I was already exercising much of my agency and control when being a parent of Sarah at any age, but…… Read more »

After spending a week not doing much except maybe an errand or two with Sarah and a nap with Sarah – or snuggling while talking about bears in boxes – I often feel like I didn’t do anything. And yet, if I wasn’t there “not doing anything” then someone else would need to be, so… Read more »

A week ago we spent a very hot Sunday morning in a small Pride Parade. Since we missed the main Pittsburgh Pride Parade, I was glad we could do this one, but if I had known how long of walk it was I might have had us turn back part way through. By the time… Read more »

Last Sunday in the late afternoon, Amy and I dropped Sarah off for her overnight camp and then went to Amy’ camp for her drop-off. Sarah’s cabin was inside a larger building, air-conditioned, spacious, and had an abundance of storage. At Amy’s camp we had trouble finding her cabin at first because we didn’t know… Read more »

We escaped the brutal heat of Monday by heading to the Jersey shore for a fun day with Carl’s cousin’s family. Amy played hard as she always does at the ocean, getting completely covered in sand and romping for hours in the waves. Sarah mainly watched the waves and chased birds. We spent the rest… Read more »