Last Sunday was a wonderful, relaxing Mother’s day that included hanging out with Grandma and Grandpa. Sarah delighted in showing them the short clips that I recorded from her Peter Pan Jr. dress rehearsal. Then Sarah, Amy, and Carl acted out a small scene involving the crocodile (Sarah), Tinkerbell (Amy), and Captain Hook (Carl). I’m not sure that that particular scene ever happened in the play, but it happened in our backyard! Then they all sang “I won’t grow up” with Grandma. The girls gave me lovely Mother’s Day cards and Carl gave me a card that included a hip that he made out of a marble and construction paper, wishing me a Hippy Mother’s Day.
My hip is progressing well, to the point where I hardly ever use the cane around the house anymore. That doesn’t mean my gait is always smooth, but I’m definitely stronger and more capable than I was even a week ago. My speed and endurance still have a ways to go. I walked to an intersection that used to be maybe 5 minutes away if I was at my full, easy speed. The round trip took me half an hour and I needed to stop twice to rest.
My headaches haven’t completely gone away, but are much less intense and less frequent. I am still hopeful that this marks the end of the cluster, but each time I have a headache I worry that I’m not yet in the clear. I remind myself that clusters always slowly ebb on their way out. It’s never just an instant clear stop.
While Sarah was using her imagination to pretend that her panda nightgown was a hospital gown covered in crocodiles, I ordered a pair of crocodile-print pajamas for her. I didn’t tell her I had done so because she has a really hard time waiting for something if she knows it is coming. When the pajamas arrived she was thrilled and now wears them around the house at all times. Her favorite pretend scenarios are either that she is Mr _____ taking the elevator to the fifth floor of the hospital to give birth to Baby Crockie or that she is Mr. ______ bringing the crocodile costume for Peter Pan Jr to the gym to show the cast members. She pretends that the costume is heavy and so wide that she has to open both gym doors to make room.
Carl has been taking Sarah out almost daily for fifteen minutes on her bike. She is getting ever more adept at balancing as she coasts and for a few brief seconds has pedaled without Carl holding her steady. We are hoping this will be the summer she learns to ride independently and then our whole family could go for a bike ride, assuming I still remember how! It has been forever since I rode a bike outside of the stationary holder in our living room. I have been riding my stationary set-up for 7 minute spurts a few times this past week, since my PT says that is one of the best things I can do to help my hip.
Amy and I assessed her homework demands for reading and math for the week, portioning out what she wanted to do each day, and she has met her goal each day. That definitely helps the weekend feel less like it is dominated by homework. That meant there was time yesterday for Amy and me to go to a few yard sales for the big neighborhood yard sale day. We didn’t go far because I still am rather slow to move down a sidewalk and don’t have the endurance I used to. Carl then took the kids to the Pittonkatonk music festival. Sarah was glad they had a bubble machine as they had 3 years ago.
The part of the week that has really given me pause was learning that Barry Neil Kaufman (affectionately known as Bears), the original Son-Rise dad, has advanced cancer and has a prognosis of days to live. Bears has been an extremely influential part of my life since 1997 when I attended an eight-week program at the Option Institute, which is connected to the Autism Treatment Center of America where they teach people to run Son-Rise Programs. Then in 2011 I was back learning to create our Sarah-Rise Program, and completed that training with two more weeks in 2012. I’ve read many books by Bears and had Option Process dialogues where he asked me questions to help me figure out my own wisdom and be free from some beliefs that maybe didn’t serve me. Notably, he asked me why, if I didn’t get what I wanted re Sarah would that be so painful for me. I have been asking myself similar questions lately as I notice how often I get grumpy when things don’t go how I want them to go. I do not always have the answer. In fact, I rarely do. But asking the question points out that maybe there is an option not to be grumpy. Over the years I have often felt mad about how Bears seemed to think it was so easy to be happy. I was expecting myself to be able to just instantly be happy all the time because if it was possible then I should do it. Now I realize that what Bears has really been advocating is radical self-acceptance and love so that I don’t run from my feelings but can sit with them and understand them better. The day I learned that he was dying I barely cried at all. That night I had a long-lasting headache. In the morning I realized that I probably needed a good cry because I probably had feelings that I didn’t want to feel. So now I’ve been feeling all of the sadness about how this integral part of my life will no longer be in the world in the same way as he has been. I’ve also been feeling deep gratitude for how much Bears and Son-Rise did for me and for Sarah and our whole family. I feel like it saved us, giving us a powerful path of play and love as our way of helping Sarah, as opposed to just fear and stress.
Carl and I watched a documentary called Let Me Be Me, which you can stream on Apple Plus tv or Amazon Prime. It is about a family who ran a Son-Rise program and about the child as a grown-up learning to be a fashion designer. It was incredibly powerful and moving to watch. I highly recommend it especially if you want a window into what our life was like in the days of full-time Sarah-Rise. Certainly some aspects are different, but the feel is very much the same. As I watched, I marveled at what a huge undertaking it was for that family and then realized….wait! We did that too! Holy crap! That was a huge deal! Not that I ever have doubted that it was a huge deal, but still, this helped me appreciate what we did. It also had me feeling teary because William Hogan is in the documentary and he was another beloved teacher who died from cancer. Bears is in the documentary, and that had me teary too.
Lots of love to you. May you have space to look your feelings in the eye and let them have a tissue if they need one.
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