All The Changes

Two days before Dad died, I got a preliminary diagnosis. I have EDS with the secondary condition of POTS. There may be other secondary conditions. I’m not ruling out a little autoimmune mischief, but let’s keep it simple if we can. There’s more precise DNA testing coming, but I’ve learned not to get too wound up —it might not show a lot.

What I do know is that I’ve been managing an actual real condition my entire life, and that I’m pretty good at it, actually. I was climbing a mountain in my 30s with a 40lb kid on my back just a year ago (yeah, I’m going to keep holding on to that). I can see how strong I am now, and how I’ve loved my body and kept it moving. So, that’s a happy spin. I’m working on various ways to get back some stamina. And you’d be surprised what I can still do (just not so much when I’m on my feet).

Now that that’s out of the way, Mom’s moving in! There were 3 main reasons. Her monthly expenses with Dad in the nursing home were not budget sustainable. My bad health days at home were frequent enough and debilitating to our family life, and she wanted to take up some slack for us. #1 reason: she didn’t want to be a homeowner or live alone anymore. And that’s what it really all came down to when we made this decision in February and March.


It’s hard to leave your things, and your space. We talked through various things she really didn’t care about letting go of. The only thing she was sad about losing were her grandmother’s dishes. I explained how we DON’T get rid of dishes, and they would be coming, and they’d have a home here. I thought she’d then have other things she really wanted to bring with her. But no, just the dishes. I love my mom.

She sold her house, and our contractor started to convert the garage into a bedroom for her. And then Dad went into the hospital and we found out he wasn’t going to bounce back. We had already sold her house, and now she didn’t have to. But if you look back at the #1 reason, she was just as happy to move.

The skilled workers have been busy. It definitely doesn’t look like a garage anymore, and we have a new huge driveway. They just finished her floor yesterday!

Chris (and his dad, and his mom, and my brother, and Jack a little) is rebuilding the fence. Mom’s room is coming along beautifully now. They just finished the floor yesterday! There will be roofers here either the end of this week, or early next week. Oh, and Solatubes are coming…

Last week Jack had Keeper Camp at the Heard Museum (he LOVED it!).


His swim lessons started this week. Next week he and Bear have a local little enrichment camp (Dinosaurs, woodworking, pottery, theater, more stuff I can’t remember). And the children are all three in a musical production called A Midsummer Night’s Rock at Read Play Love in Dallas this weekend. In fact, Mom and I were up late finishing costumes last night.


We may have overloaded ourselves a little. But with all good things, right?

Last year my dear friend, Sarah M. gave me a coloring sheet. I ran across it right after Dad died. There are so many feelings right now: relief, guilt, grief. It’s normal. I decided it was time to color. I got a little bit in, and my hand started swelling, and my arm and shoulder couldn’t take anymore. I remembered why I don’t color, it’s an old problem, and turns out related to EDS. Jack came in and saw it, and exactly as I figured, he offered to finish it.


He LOVES drawing and coloring. He had gotten a box of cards with Psalms on them from a friend. And several weeks ago, he colored this for Mom.




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