August 5

Sometimes something can be staring you in the face for a long time before you realize it. Sarah took, and continues to take, guidance for her speaking incredibly, astoundingly, amazingly, mind-bogglingly well. This is not the case for other skills. When I try to guide her regarding piano practice or other physical skills she instantly gets frustrated, doesn’t want to listen or watch, and wants to be done. Huh. Why did it take me so long to realize the dichotomy? I mean, I have known for a long time that she takes instruction better from others than from me (except when it came to learning to speak or read). So now I get to ponder if it is how I approach it? Did I approach speech very differently? more relaxedly? more simply? with more celebration? with less end-gaining? probably. For now I realize it is best to let her practice piano however it happens and let all of the guidance come from her teacher. 

We went to Kennywood with the wonderful help of our sitter E. Many parts of the day were good. Many were frustrating. The most frustrating moment that had me close to tears was coupled with a small miracle. They have an awesome climbing play structure in the new Thomas the Tank section of the park. You must be 2-12 years old. You must have socks. It is the SUMMER. Many kids do not wear socks in the SUMMER. They have a store connected to the play area. It sells socks. For toddlers. ARGH!!!!!!!!!!!!!!!! There is a person stationed at the start of the play structure whose sole purpose seems to be policing socks or the lack thereof. Amy did not have socks and was super upset. When Sarah came out for a moment I told her that we were truly forlorn, distraught, dismayed, disheartened, and down in the dumps because of the sock situation. I asked if she would be willing to let Amy wear her socks for 5 minutes to take a turn. She said yes!! This is a small miracle because Sarah really really prefers wearing socks, except at the pool or beach. I would go so far as to call it a sensory need. I celebrated Sarah hugely and did as many sad faces and snuzzles against her shirt as she wanted.

We went to Randyland for the first time. It is an artist’s backyard that is open to the public. The girls loved the old rocking/spring horse toys and the old phones. Sarah seems fascinated by the fact that I used to talk on the phone in the kitchen.

Thursday night Sarah had another seizure and this time I can’t blame it on any new supplements. It happened when she was asleep, just as it has in the past. This time I didn’t witness any part of it, but I heard her screaming and crying which she normally doesn’t do in the night, no matter how many times she may get up or call for us. I thought maybe she had a nightmare. She was oddly positioned in her bed and when I invited her to come to my bed she couldn’t move herself normally. As I attempted to help her it was like moving a large rag doll. I knew then that it must have been a seizure. I hoped she would fall asleep easily as she had after the one in June. Instead we spent about four hours alternately lying down for a couple of minutes and then sitting up with me holding a bucket or a towel in case she puked. Sometimes she would ask for water and I would get it for her. Sometimes she said “ow, ow, ow, my head hurts.”  She normally never says her head hurts. I started questioning myself for keeping her home but I also thought a hospital wouldn’t help much, especially with sleep. Plus, it was the middle of the night and Carl was out of town. Eventually, Sarah did throw up and then I gave her Advil. She made it 15 minutes before being sick again but I think that was enough for the Advil to start helping her head because then at 3:30am we were able to sleep. When she got up 4 hours later she was back to herself and feeling good. Now we have to think about if it is time for a regular anti-seizure medicine or if they are still rare enough to just cross our fingers and hope. Her misery after it happened makes me not want to have a recurrence. A side note is that Amy was wonderful in the night. She went to get the puke bucket (aka our salad spinner; don’t worry, we wash it well!), got Sarah a stuffed animal, and snuggled next to me supportively for a few minutes before I said it would be ok if she wanted to be in her bed so she could actually sleep. 

With some parts of my life I find I am often resisting them as if astounded and offended that I need to do them at all (constant dishes, laundry, cleaning the house in general, mail, etc). Sometimes I feel this with parenting moments, especially if I have the audacity to attempt to do my own thing. I know these days I do actually get to do my own thing a heck of a lot, but that doesn’t seem to change the outrage if it feels like I can’t. 

As the end of summer approaches I am both sad at the prospect that our relaxed days will end and also cannot wait for these $*(%! never ending days to be over. I love the relaxed mornings and our fun adventures. I can also feel like I will lose my mind and can’t stand another long day of just the girls and me. Then I remind myself that in a few years they won’t want to spend so much time with me or snuggle and that I should hold onto these moments as hard as I can. Then they fight and Sarah doesn’t listen when I tell her something 5 times nicely and then I’m a yelling, screaming mess who can’t take one more second of this. So it goes, around and around the ferris wheel of our experiences. I guess the good thing is that most of the ride is actually wonderful and we recover quickly from our upsets. Yesterday Sarah and I were really screaming at each other regarding a smoothy and needing to wait a couple of minutes. It was not my finest moment, nor hers, but then we quickly regrouped and enjoyed our smoothies, popcorn, cold s’mores, and apple slices for our picnic in the living room. 

I’ve been reading a book, Teaching by Hand, Learning by Heart, by Bruce Fertman. He was one of my teachers that taught me to be an Alexander Technique teacher. This book is so beautiful I both want to devour it all at once and go slowly to savor it. I know I will read it repeatedly. There is so much wisdom and poignant beauty in it, helping me understand even more how I want to be.

Yesterday I bought myself a new mug when we went to the Mattress Factory. I have a lot of mugs already. Too many. I have beautiful mugs that I love and because I don’t want to part with any of them I often tell myself no when I see new and beautiful mugs. Yesterday I thought maybe that is not how I want to continue. Why do I tell myself my quota is already full? It reminds me of when I was little and I would save all of my favorite coloring book pages, not coloring them because I thought I would do so later. But that later never came because then I stopped coloring in those books, outgrowing the desire before coloring the best pages. 

May you get to do your own thing, may you be able to chuckle at the moments when you feel affronted by the mundane requirements of life, and may you have sweet moments with your loved ones. And may you have socks when you need them!