We had another good week of Mama Mouse School House. When Sarah and I did our snuggle time sometimes we talked about muscles and bones. She mostly knows biceps, triceps, deltoid, and scapula. When she brought up the chain on my necklace and how she wants to sleep on a chain that holds a sign for a pizza shop in Squirrel Hill, I connected chains to chain mail. Chain mail connected to Granddad and how he made his own chain mail when I was little. I helped him make it when I was maybe 4 or 5 by holding a yellow plastic bowl filled with the loose links ready to be formed into the chainmail. I’m sure you can see what an important role that was. Anyway, Granddad sent pictures of the chain mail. That history lesson spanned maybe 5 minutes if I’m lucky, but it still felt like a good effort. Sarah and I also learned a bit more about praying mantises, such as how carnivorous they are and that sometimes they are yellow or pink.
Sarah is a sparkly, passionate, stubborn child of 17. She has developmental delays and autism. When she was 4 I decided to run a Son-Rise Program, calling it Sarah-Rise. She wasn’t speaking or eating well or potty trained. Eye contact was fleeting, she didn’t play games or play imaginatively. She couldn’t read or write. All of that has changed. I started writing weekly updates so that people could follow our journey.
Sunday, December 20, 2020
December 20: Snow, Cluster Headaches, and more Mama Mouse School House
We got a wonderful and beautiful amount of snow mid-week. Sarah completely independently got herself suited up and went out to shovel the walk and brush snow off the car! After all the snow had fallen those tasks were ultimately for me and it was quite a workout. We got 10 inches of heavy snow. Sarah doesn’t always want to spend time outside but when there is snow she is quite the little polar bear. She walked around the block many times to get to and from school. She especially delighted in climbing the mountains of snow where people had piled their shovelfuls. Amy flew to and from school on her broom, as is her custom. She also oversaw final exams at Magic Academy. I led the potions exam and helped them make a heartwarming potion that might remind you of minty hot chocolate but really was made of shark blood, pixie dust, kitten whiskers, frog eggs, and a claw from a blast-ended skrewt, a la Harry Potter.
I made Norwegian Christmas bread from a recipe that my mom and I have tried for years. It came from a magazine long ago and it tastes delicious, though it never bakes well. It burns on the bottom and is gooey in the middle. This time I thought more about how I make normal whole wheat bread and realized I could change many things for the Christmas bread. I’m wavering between just wanting to try one of the many alternate recipes online and wanting to wage war on the original recipe until I get it right. Either way, I’m enjoying my 4 burned soggy loaves of dense bread with dried and candied fruit. Toasted and with margarine, it is a treat.
Sarah and Amy had a Christmas party on Facetime during their weekly SR time with Sc. This time I got to overhear most of their time together and I was in awe of Sc for how she coached Sarah in “by step by step” (as Sarah calls it) drawing. I think that is where Sarah gets her love of that process and Sc is masterful with describing how to do each step and having Sarah say “check!” after each step. I believe they drew sad mice in profile wearing musical note clothing and crying musical notes.
The most difficult part of the past few weeks has been the return of my cluster headaches, breaking through my levels of medication that are supposed to keep them at bay. The last time this happened it took two rounds of prednisone to get things under control. Today is my last day on my second round of prednisone and I can tell the headaches are waiting in the wings. I have 9 doses of a nasal spray I can use if I get super bad headaches and when we get home I will hopefully be able to try a new medication that involves giving myself 3 consecutive injections once a month. Why oh why couldn’t they put all of the meds in one injection?!!!!!! For migraine sufferers who take the same thing, it is one large injection. But for cluster sufferers it is 3 in a row. !!!!!!!!!! I do not like needles. I do not want to give myself shots. I am not happy about this at all but I also need something because it is really untenable to get cluster headaches all the time. Aside from the return of the headaches, all is really well and wonderful.
Now we are in a rental RV wending our way to a rental house in Florida. Grandpa, masked and safely distanced, helped us get out to the RV rental place with all of our stuff and then got our picture before we hit the road. This way we can have a change of scene for Christmas but also not see anyone. Yesterday was awesome and wonderful in many ways, but it was also fraught with tensions and meltdowns. In hindsight there are many things we could have done differently that would have made things easier, but so it goes with hindsight. When we were loaded in the RV and ready to go, Sarah had a huge upset mainly about how the seatbelt was too tight. The seatbelt that had enough leeway to go around many different sizes of person. The seatbelt she hadn’t even tried yet. Eventually the storm passed and we set out on our way. Our timing estimates were vastly different from reality given that we are now in a beast of a vehicle that has trouble making it up to the speed limit on a hill. We also stopped more often that usual for bathroom breaks and snacks. I am forever indebted to Carl for dealing with many things, most especially emptying the sewage tube this morning! He has also done all of the driving. As we say often, we are a good team. I did a ton of planning and preparation for our travel supplies and now he gets to deal with the stressful bits of how to manage the RV. Our cat is at home in good hands, along with the 12 ripe avocados that I meant to bring! Aside from that, I think I remembered everything.
Lots of love to all of you. May your seatbelts fit and your bread bake well.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment