We now have a rising 7th grader in the house! Amy finished her last week of 6th grade with a fun-filled day at Kennywood with some of her best friends. Kennywood is a local amusement park. In past years we have all gone as a family but this year Sarah had Music Camp with one of her friends, run by Anna at our house, and I didn’t want to cut that short. Also, last year Sarah lasted about an hour at Kennywood before really wanting to be done. A few weeks ago I asked Sarah if she would want to go to Kennywood after music camp and she said no.
Sarah had a wonderful week of Music Camp aside from the day when she suddenly didn’t feel well just after breakfast. It was the scenario we are only too familiar with from about a year ago of her suddenly saying, “whoa!” and feeling headachey, woozy, and like she needed to throw up. She did. Voluminously. I was teaching but Anna handled the day beautifully, as beautifully as they facilitated the days when everyone was healthy. So I knew Sarah was in good hands, but it was still hard to be away from her when I knew she felt miserable. Luckily she felt better by the end of the day. We don’t know for sure what brought on her day of sickness, but my immediate suspicion was that it was due to increasing one of Sarah’s anti-seizure medications. It is what she used to be on for years, but as we switched to another one and weaned her off the oxcarbazepine then that coincided with her symptoms of phlegminess improving a year ago. We changed many things though so we don’t know what was the most important shift. We put her back on oxcarbazepine now because clearly the topiramate hasn’t been enough to keep her seizures at bay. But her dose of oxcarbazepine is much lower than it was a year ago. Until Tuesday of this past week when we bumped it to a higher level. Thursday she felt crappy, so we backed the level to what it had been. Fingers crossed this is somehow just the right amount to keep seizures in check and keep Sarah still feeling well.
For Music Camp there were many fun times over the four days of health. They all made miniature drum sets using old yogurt containers, jam lids, tooth picks, and other recycled objects. They made paper bag puppets and beads that they used to make bead watches and bracelets. Anna made Sarah a beaded ring too. We were amazed by the detailed beading Sarah did, not needing any help to thread the tiny beads. I have trouble even picking up these beads because they are so small. Anna and I both had the sense that Sarah and her friend were connecting and talking to each other more than in past years, which is super exciting because they will be at the same school next year. One subject of conversation was after Sarah had a melt-down Friday when they got back from the playground. Sarah wanted a donut from the batch I had made in the morning. I said no but that she could have one after dinner. She really didn’t like that answer and was loud in her vocal protest. She also slammed the metal lid onto the donut tin. Her friend got upset about how loud it all was. While a double upset was difficult and I was glad Anna and I were both there (Anna handled it incredibly gracefully and calmly), what impressed me was hearing Sarah and her friend talking when there were no adults present, as they discussed what had happened. They then practiced deep breathing to be calm - so deeply and quickly that Anna and I each panicked that someone was having an asthma attack! But all was well. Lastly, one of my favorite moments that I witnessed during Music Camp was when Anna would play a song on the xylophone and the kids tried to guess what it was. Once they guessed it then all of them would sing it together, using their own instruments too if they wanted. It was so fun. I haven’t seen Sarah so delighted and engaged in an activity with sparkly eye contact and clearly enunciated singing in I don’t know how long.
Carl got Sarah a banner of individual letters that spells “Congrats Grad” and large wall sign that says the same. She had liked them so much when she graduated that he figured she would like her own and he was right. She loves them. He also correctly predicted Amy’s glee when she saw him wearing a shirt that says “I'm a potato,” as she affectionately calls him a potato.
You know when you see a part of the world and it seems to be sideways from normal? Well, that is often how I feel when I look at our steps and see our cat lying on her side with her feet on the vertical part of the stair, as if her world would be upright if you just rotated the entire house. Amy recently joined her so there were two beings lying on the steps.
Yesterday we went to our favorite lake beach for the first time this season. It wasn’t really warm enough for much water time but that didn’t stop Amy from at least testing it out. She and Sarah also spent many minutes playing in the sand. We finished the day by watching an animated version of Frog and Toad stories, originally by Arnold Lobel. We all love the books and the animated version did not disappoint. One of the stories was “The Letter.” When we were done watching, Amy wrote a letter to Sarah/Toad from Amy/Frog and then pretended to be the snail delivering it.
I have been frustrated by our kitchen cabinet storage situation for a long time, especially regarding containers and lids. Carl bought kits to install pull-out drawers behind a cabinet door and our life is much better now. Our cat wanted to help with the installation though, climbing into the space before the drawers were in. Of course. Just like a cat.
Overall I know things have all been wonderful and good. I will also admit that things have been feeling hard for me these past few days. I haven’t had the space and patience with Sarah that I sometimes have. It also doesn’t help that when Sarah suddenly doesn’t feel well then my whole body fills with adrenaline and also frustration and desperation. It’s as if I’m mad at her (perhaps due to inconsistent answers so it is hard to know what is really going on) and the situation and feeling helpless to make it better but like it is also my job to make it better. Her times of screaming have also felt challenging, and I’m nervous about when she is at a new school with a friend who gets upset by loud noises. That is not a good combination. I’m hoping somehow it will help Sarah figure out different ways of expressing her upset. But I also understand the feeling of being filled head to toe with such frustration that you want to scream. I have moments when I can’t keep it in check either. Carl is about to be away for a week for work and I won’t be working as much as usual so I can be home with Sarah on some days (Amy will be at a day camp). I’m feeling a bit of trepidation about that, even though I’m sure we will have some lovely times.
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