May 18

Usually, when I see friends who get these updates, I feel that I have nothing to tell them when they ask how I am doing. This week I had the lovely gift of people asking how I was, wanting to really know the nitty gritty details and I let myself spill it all out instead of thinking I had nothing new to say. So, here is some more spillage.

I am doing really well and I am floundering about and struggling. I am middling. I am blah. I am introspective as I consider the big picture of life. My step-grandma recently died and I went to Delaware for three days for the memorial service and family gatherings. It was really wonderful to see so many family members that I don't often get to see. I was very moved by seeing a picture of my step-grandma when she was about Sarah's age. How can we go through all of these phases of life and then not be here?? How is she not here anymore in her usual form? How am I not still 7 years old? How is it possible that Sarah and Amy, if we are lucky, will grow up and have kids? How is it possible that I will grow old? And I sincerely hope I do. I hope to stay mentally and physically fit, but I do indeed hope to be a grandmother and great-grandmother. And yet, how is that possible? 

I am so critical of myself in so many areas but I am contemplating the idea that maybe it is all ok. Maybe it is ok if I don't work the hardest, eat the healthiest of anyone, lose a couple of pounds. Maybe I am still allowed to exist and be happy. Maybe I don't need to justify my existence and my choices. And, yet, with regard to Sarah, I do in fact have to justify my choices somewhat so the various powers-that-be let us continue. But maybe I have more leeway with this than I think.

We stopped Sarah's supplements over a week ago because her skin was having such strong and varied reactions. We are still waiting for her skin to fully heal and then I will start the supplements again but one at a time so I can tell which ones are a problem. This feels frustrating to be in a holding pattern, waiting before we can move on. I also feel like I have relaxed a lot compared to the early days of our various dietary changes. I am more accepting that this may take a while and that eventually we will move forward.

When I was away, Carl and the girls spent some time with some neighborhood kids. Sarah was isming with a large umbrella and not responding to a child who was saying, "Talk. Why don't you talk? can't you talk?" or something like that. Amy came over and said, "She can talk!" I'm not sure if this was defending her sister or more correcting an error on the part of the other child. Sarah can talk and Amy knows it and Amy likes everything to be stated correctly.

I was pleased with one of our art projects this week. Sometimes the girls try to push each other off a chair when they want to sit where the other is sitting. I started talking to them about this and using some language from Pete the Cat books. Amy wanted to see the actual book so I decided we would make one. I found coloring pages of Pete online and printed several. I wrote some text about Pete's Seat, making two copies of each page and then giving them to the girls to color. I love our new books! 

In talking with my mom yesterday I once again saw how clearly I believe that I have to be working hard in order to make a difference or be ok. We laughed about how I could work hard at taking it easy and my mom quipped, "put your back into it!" I love that. Perhaps I can actually let things flow more relaxedly if I acknowledge the effort it sometimes takes to let things go. So I do intend, at least for a day or two, to put my back into it! 

When Carl and I were talking about eating and my various intentions and struggles he commented that what helps him is saying he will have xyz first (eg veggies) and then if he is still hungry he can have whatever treat was seeming enticing. This has proved quite helpful in the day I've had it in my mind. If I tell myself I shouldn't have xyz at all ever then I almost immediately have it because I can't stand the restriction. Telling myself that there is no restriction, just a possible delay, is helping me make choices more in line with my intentions. I wonder if this could further apply to my SR intentions and being ok if things don't go as I think they should.

I have not done any official SR time in the room this week. I was gone for 3 days, and then on Thursday and Friday when I suggested we could go do mom-Sarah time, Sarah yelled, "no! no! no! no Sarah-Rise room!" I haven't wanted to force it and haven't felt great about her response. When a volunteer arrives, Sarah eagerly and quickly goes to the room, so this is not about the room. I am uncertain about how to proceed given that with the intention of homeschooling I have the plan of a slightly more regulated schedule of events. I certainly can still give Sarah focused attention outside of the room but it is different. And it's not that she doesn't want to be with me. She spent many minutes this morning cuddling on my lap, tucked into my bathrobe, pretending to be a baby. (Amy really wanted to be on my lap too so I recited Pete's Seat as I encouraged her to find a different seat). Maybe I have been feeling that I should go in the room and maybe Sarah is picking up on that and not wanting to be with should energy. Maybe if I put my back into chilling out more then she will want to go in the room more. Does that count as relaxing more if I am then peeking to see if it works? But if it does work to really chill out and then Sarah still thrives, how can it be that easy?? how can that be ok?

Amy and I played Cootie this morning, a recent find at a yard sale. I was really struck by how easy it was to play a game with her. She waited while I explained things, she wanted help with taking her turn. There was no rush. Often when I play games with Sarah it is mostly about my goal of playing a game with her and I feel like I must be extra dynamic and speedy to keep her interest and show her it is fun. Perhaps I can learn from my time with Amy and let myself slow down more with Sarah. Maybe this would be more effective. Or, if she then preferred to do something else, maybe that is information too and that I don't need to force it. 

I think part of my recent struggly feelings are due to resisting Sarah's condition/situation. My efforts in all realms are really to fix it. But I am tired and want to be done. My mom pointed out that maybe I am ready to be done with some part of how I approach our situation. For instance, perhaps it is time to really let go of feeling responsible or like there is something to fix and that I should have done so already. But how can I just be? I feel like I must be driven by a goal of helping Sarah, but I also know I am actually more creative when I am most relaxed. This feels like an internal conundrum and tug-of-war, even though it is probably actually all going toward the same truth. And if we are all going to die anyway then maybe I could stop sweating everything so much.