It seems that I was mistaken about my cluster headaches being done. I’m on my second round of prednisone now and hopefully this will do the trick. I continue reading the book about how to change my life experience so I don’t get headaches, but I am much more capable of paying attention to anything and making life changes in any way when I’m not dealing with excruciating pain/fear of pain/dread of sleep/exhaustion. So prednisone it is.
Sarah’s school program had their Inclusive Games on Tuesday. Each child from the St. Anthony’s Program is paired with a neurotypical child from their school. They do relay races, ball throws, soccer kicks, and the 50 yard dash. Their scores are for the pair. The cheering is loud and enthusiastic. Then we all spread out picnic blankets in the grass and have lunch together. It is fun and relaxed. It is also often hot and there is a ton of standing and waiting. Last year and this year, Sarah was wilting by the end. But she loves the day and looks forward to it all year. She loves her special shirt that she wears for the day. She loves the ride on the big yellow school bus. Last year, Sarah’s partner had been invited to pair with someone else (Sarah was in second grade last year and is in fourth grade now so her neurotypical class is different), but was unable to attend and was heartbroken. She was thrilled to be asked to partner with Sarah this year. This, again, is why I love Sarah’s school program. There is such true joy, acceptance (because what is there even to accept? this is just a person to enjoy!), and thoughtfulness from the teachers, staff, students, and parents of other students.
Amy has started feeding our cat Olivia for some of her meals. Usually this has been for dinner, which is simple because the can is open and she just needs to empty it. This morning she wanted to give Olivia breakfast, which involves more steps and requires the help of a grown-up for some of it. There were many tears of frustration about how she didn’t know how to do some things. Doing things for the first time can be hard!
Sc has some magical skills and was able to give Sarah a mid-week bath including hair washing but not including any screaming. She may have a new job! Sarah and I just had several minutes of a discussion/Sarah-scream-session because I said that she needed a bath with hair washing today. Doing things for the millionth time can be hard!
Sarah has a book that includes a reference to singing “Kumbaya.” Sc taught her to sing the song and it is Sarah’s new favorite thing to sing. She has such a sweet, earnest voice. Sometimes she picks up her ukelele to strum along. I’m thinking maybe she could learn to play it on the piano, and she usually sings her pieces as she plays. I do have a short video of her singing but it is too big to put in an email. If anyone wants to see it, just let me know and I can text it to you.
Some lessons need to be relearned many times. Carl often has ideas of things to do that he thinks will be fun. Sometimes the girls don’t think it will be fun even when they have no idea what it is. Sometimes I worry about all of the aspects of something that might be hard and thus don’t think something will be fun and would rather stay at home. The thing is, usually Carl is right. Yesterday he wanted to go to a music festival called Pittonkatonk. I thought I would be overwhelmed by the crowd and herding children. I thought I might feel awkward and out of place. I forgot that this is Pittsburgh and that even for a regular trip to anywhere, it is extremely likely that I will see someone I know. Luckily, Carl prevailed upon all of us reticent doubters and we went to Pittonkatonk. We had a wonderful time and saw soooooooo many people that we knew, some of whom are among my absolute favorite people in this world. I am already looking forward to attending next year. Sarah loved the bubble machine. She also told Carl at one point, “I am so happy with this band.” Amy enjoyed a wooden chicken on a stick and seeing some of her favorite sitters. I would like to say that we will all remember this the next time Carl suggests something new, but I predict that we will still require some nudges. I do know that my life experience is better thanks to Carl and his enthusiasm for trying new things.
Happy Mother’s Day to my three mothers and to all of the mothers reading this, whether you are a mother to children, animals, a garden, a creation of any sort, students, your own sweet self, your unfolding adventure of a life… May you be surrounded by some of your most favorite people.
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