August 27: Glasses, Orientation, and some Unwanted Excitement

 Sarah’s dreams have come true. . . . She needs glasses! She only barely needs them, being a tiny bit farsighted, but because she was singing gleefully about how much she loved glasses while she had her annual check up at the eye doctor, the doctor figured she wouldn’t mind having glasses. Now the only issue is that we have to wait while they are being made. Remarkably, Sarah is handling the wait relatively calmly.

Amy received an exciting gift as well. A couple of weeks ago I searched on Etsy for a scoliosis brace for an American Girl doll. Not only did I find one, I could get it in leopard print and with white straps, just like Amy’s. She was surprised and delighted when she opened it.

Amy’s first day of school was better than she feared, although her class schedule was not actually what we had seen online. The actual schedule is better in some ways and worse in others, from her perspective of what classes are shared with friends. Transitions between classes are even shorter than they were last year, which seems absurd to me. According to Amy, they get two minutes to get between classes and that includes any bathroom trips, refilling of water bottles, or stopping at a locker (because they aren’t permitted to carry backpacks except to and from school). Also, there will be no graded homework. Um?? I don’t see how that is good preparation for future years of school. 

Amy’s second day of school had some unforeseen excitement, that we didn’t fully understand until it was over. You may have seen it covered in the news. What parents and students were told was that there was an incident in the neighborhood so the school was in a soft lock-down where no one could enter or leave the building. Since this was a Wednesday and on Wednesdays I have to get Amy slightly early to get to Schroth therapy, I wondered how that would work. That wondering was quickly answered by a robo call telling all parents of middle schoolers to pick their kids up in person immediately. This was close to dismissal anyway, so it worked well in terms of when I wanted to get Amy, but it created a ton of slow moving traffic as the pick up line inched past the school. I think it took 30 minutes from when I got to the pick up line until I had Amy in the car and we headed towards the Children’s Hospital for her appointment. While in the pick up line I searched the news and found that it was an active shooter situation regarding someone being evicted from their home and refusing to leave. Our route unfortunately took us closer to the problem so streets we normally took were blocked. We made it just in time to her appointment. Then it took a loooong time to get home and I was anxious about getting to my evening client on time. But most importantly, we were all safe. 

Carl took Sarah to her new sophomore orientation on Thursday and she started her morning by walking towards the principal, who was waiting outside to greet students, and saying, “Hi, I’m Sarah.” Her morning went well, although she was starving at the end of it. Since it was a half day there was no lunch or snack, and yet it went from 7:50am till 12:30pm! 

Last year the only way I found out Sarah’s bus information was by contacting the transportation helper at the St. Anthony School Program, who then reached out to the public school bus system. So this year when we were less than a week out from Sarah’s first day and I had no information in my snail mail (why that is still the method for conveying such information is beyond me), I reached out to the transportation helper again. She wrote back the next day with the details provided to her. Oddly, the details involved Sarah having a bus stop that would be a 15 minute drive from our house. Um? That made no sense and if it wasn’t an error or couldn’t be changed then we would opt to drive Sarah to and from school instead. I made calls and left messages. And then I got the snail mail. And there was my letter with the correct details explaining that her stop is at our house. Whew! Her pickup is eeeearly. If I thought it was early the past several years, I was mistaken. Last year she was picked up at  6:52am. Now she will be picked up at 6:35am, but she is to be ready, as usual, ten minutes prior to that. So I will wake her at 5:25 on school days, and I will get up at 5:05 so I can feed the cat and have our breakfasts ready. She and I tend to rise early easily, but still! She will also get home later in the afternoon than she used to. Fingers crossed that we have a reliable regular driver. Sarah's first day is this coming Tuesday.

Carl is currently with two friends from grad school, hiking in the Dolomites in Italy, so he will miss Sarah’s first day, but he got a picture of her for orientation. 

While Amy was at school one day, Sarah and I went to the art supply store near where we used to live. Sarah noticed the playground we passed on the way, a place we frequented in her younger years. She asked to go so we did. She loved it and requested it the next day and the next! Our timing was flexible enough to go three days in a row, including going yesterday with Amy. Sarah loves sitting in the play firetruck and talking about how it has no steering wheel. She also loves climbing a curved metal ladder thingie, pretending to be her younger self struggling while simultaneously supporting her own leg as if she is her current self helping. Amy and I liked to eliminate spotted lantern flies. 

Yesterday we did The Great Stuffed Animal Sort of 2023, yielding a large bag of stuffed animals ready to go to a new home. We also did The Great Book Sort of 2023, which yielded only a small pile of books that we could all agree to give away. I don’t mind the small pile because the activity also resulted in both kids reading many books and remembering stories they had loved in years past. 

This morning Sarah felt a little phlegmy and not quite the best, although she seems to be ok now. It’s such a tricky thing to determine what the actual problem is and how to fix it. Too much of one kind of anti-seizure med can cause stomach upset and phlegm (we think) but she needs at least some of it to control her seizures. We think limiting dairy helps reduce phlegm and this past week Sarah has had more dairy than she usually does, so that may be the issue. Or maybe it was having things with orange juice and tomato sauce that got some acid reflux going? I don’t know and I hate trying to solve such mysteries, especially when Carl is away on a mountain and largely unreachable even for consultation. Whenever Sarah doesn’t feel well I get filled with adrenaline. I’m both fearing that I mismanaged something and caused the problem or that if I don’t solve it right away it will mess up future plans. I really want her to have a healthy happy first week of school! 

August 20: Barbie, Ice Cream, and Growing

Ice cream! We have been enjoying so much ice cream lately. Friday night was family night at Carl’s work that included a Millie’s ice cream stand, so of course that is where we started. Then the girls raced a robot, climbed into the cab of a semi-truck and did cartwheels in the parking lot. My brother is visiting for the weekend and we like to do ice cream tours of the city so yesterday we went to Jeni’s  and Millie’s. Today we will explore Dari Delite, Carl and Amy’s biking destination last Sunday evening. I think my new favorite flavor is the salted licorice from Jeni’s, although I’m the only one in my family who likes licorice. Near the Jeni’s ice cream store there is a faux-grass lawn with gigantic bean bag chairs onto which we flopped. I could have easily taken a nap there, but I knew I would have woken up overheated because of the direct sun. The great thing about all of these ice cream places is that they have dairy-free options for Sarah. While I do allow her to have dairy, I prefer to limit it and save it for the times when we don’t have other options.

Amy and I went to the Barbie movie, decked out in as much pink as we could find. She loved it. I had seen it the week before with Carl, nearly falling out of my chair laughing at some of the scenes. That same night, Carl and Sarah took the bus to Aladdin’s so they could have a special dinner while watching buses drive by. We will certainly stream the Barbie movie once that is an option so Sarah can see it, but since she likes to talk loudly during movies it doesn’t really make sense to take her to a theater at this moment in time.

Camp Anna filled the girl’s days with impressive activities such as printing their own designs that they ironed onto t-shirts, making their own temporary tattoos, painting murals on movable slabs of wood, and running a lemonade stand. Sarah traced the pages of Blue Hat, Green Hat and Anna shrank the pictures so they could all fit on Sarah’s t-shirt. They also created a separate t-shirt out of the book cover, again traced by Sarah. Sarah read the book to her stuffed animal tiger, and she is eagerly anticipating reading the book with my brother who does the best “oops” sounds. Amy’s camp shirt included a stack of cats, of course.

One night Sarah and I clashed a bit over me telling her that it was time to stop watching TV. It escalated monumentally so we were both quite upset and yelling. In hindsight I could have avoided the whole altercation by changing how I approached the moment to begin with, so I have learned something for the future about not criticizing her. Obvious when stated, because who likes to get criticized? Who wouldn’t get defensive and protest more intensely? I think in criticizing her I was also judging my own parenting, thus setting us both on edge. Sarah gave me a good tool to remember for defusing similar moments with humor. When we were snuggling on the porch swing after our fight she said, “Stop watching TV Bernard!” That is a reference to a book called Stop Snoring Bernard. Now if I tell her to turn off her technology and she protests, I say lightly, “Bernard!” and she shifts to joking about that.

Amy’s week was mostly good, but still had rough patches of everything feeling too hard, especially when I erroneously commented that she might have to do Schroth exercises forever. Her mouth is sore from her new aligners which are tricky to pull off of her teeth, the top one often going flying across the room. On the plus side, I think I solved our problem of a fall and winter coat for her. She has outgrown the ones from last year, at least in her arm length. At first I despaired of where to find something suitable, but then had the idea of asking her to try on Sarah’s coats, which were the same brand but one size up. They fit! They are roomy around the torso, but not ridiculously so. Amy’s new coats should arrive soon, well ahead of when she will need them. Amy had been growing 1/4 inch per month for much of this past year, but now is growing twice as fast. She is 5’7” so if she keeps growing at this pace she could be taller than I am by the end of the year. At least we verified that I haven’t lost height so I’m still 5’9” which is nice to know.

Love and ice cream to you.

August 13: Blueberries and Braces

I may have purchased 8 quarts of blueberries! That is a lot of berries! Sarah helped me make a blueberry pie using Grandma’s recipe for the best blueberry pie ever. It really is the best. Sarah also helped sort berries so we could freeze some. This morning I am going to make blueberry bread and earlier in the week I made jam and a second pie. Delicious!

Last Sunday we had a brief visit with my aunt and uncle after we got home from Detroit. They were also driving home after a trip to Michigan. Even though the visit was short, there was still time for Sarah to read her new copy of Blue Hat, Green Hat to them. Sarah has decided she wants to be the elephant from that book for Halloween, and it’s never too early to start making costumes, so Anna helped Sarah create a cardboard elephant body with cardboard legs. 

Sarah sometimes misses me a lot when I go to work or teach and sometimes calls me in her distress. I fully expected a sad Sarah when I picked up her call during my session with a client on Monday. I normally don’t answer calls, but if I’m not at home and the kids are on their own, then I do answer in case it might be an emergency. It wasn’t an emergency and it wasn’t sadness! She was calling to let me know she had fixed lunch. I thought she meant she made her own lunch, but when I got home I discovered three plates covered with carrots and beets that I had cooked the day before. I adjusted the portions and filled out the rest of the meal, but I was impressed with her initiative to prepare food and to tell me about it.

Carl got a small yellow guitar that is designed to help kids learn to play chords. Both girls have played it, enjoying the game that Carl found online so you build a monster on an iPad as you play guitar.

I took Amy to see my chiropractor, and Sarah came along for the appointment. When we were walking to the car afterward my two goofy turkeys put their masks (a la covid prevention) over their eyes. Oops! Sarah also came along for Amy’s brace checkup. My car was at the dealer for some recalls and an inspection so getting to the appointment and then to get my car involved some long waits for Ubers and going through tunnels during rush hour. Good thing Sarah loves tunnels and even gets delighted by traffic jams. If only every commuter could channel her energy as she smiles broadly while saying, “oh no! Traffic!"

Amy wears her scoliosis brace all the time now except for brief respites when she first wakes up, before bed, and for Schroth therapy. She has had many big feelings, especially each time she has had to increase her hours or the tightness. Her first night of wearing it to sleep was a bit rough too. This Thursday she will get aligners for her teeth, just like Sarah has, instead of getting braces. That is a lot to manage as she looks ahead to starting seventh grade. It did not help her feel any better to learn that her bestie will not be in all of the same classes this year. Last year they were together from the morning bus through the afternoon bus and for all classes in between. Last night when we got the class schedule and learned of the mismatch, she was extremely upset, feeling like seventh grade is already just too hard. She’s one resilient cookie so I know she will manage it all and probably even have a good time, but that doesn’t mean the feelings aren’t intense. I also know from my own experience that the best way to get on the other side of such feelings is a good hard cry. I know this experience will also probably help her independence and confidence later in life, as my rough times helped me, but….if I had a magic wand I would still change things so that my doubly braced and aligned kiddo could have her bestie by her side all day.

Much love to all of you. May your alignment not be forced.

August 6: Conference!

We had a wonderful relaxed time at one of our favorite lake beaches with Amy’s bestie and her parents, finishing the trip we began last week. There was another kid on the beach who became friends with our crew and connected with Sarah as well as Amy. It was beautiful to witness another kid ask Sarah questions and wait for her to answer. Sarah asked her questions too and volunteered information to share, such as that she is excited to start high school soon. I’m sure Sarah has had similar good interactions with some of her school peers, but those weren’t moments I observed. After our last day with the new friend, Sarah said that being with the friend was the favorite part of her day. 

On one of our beach days Sarah and I clashed mightily about her watch and her reticence about removing it. Carl pointed out that the majority of the struggle was probably simply because Sarah doesn’t want to be told what to do. The next day we decided to loudly proclaim our own watch removal intentions as we got ready to go to the beach. Sarah followed suit and easily took off her own watch. 

Sarah resisted taking a shower when I said it was time, but then happily participated in a shower competition just as Amy and her bestie had done. She then initiated shower competitions with Amy the next beach days. 

Carl has continued to help Sarah practice riding her bike and she has ridden it with her feet on the pedals without Carl holding on 
for a nanosecond or two!

Amy got her scoliosis brace on Wednesday (that a was a bit of a long hard day) but hasn’t started wearing it because we are away for a conference for families with members with Sarah’s diagnosis and it would just be too much to add the brace. We will start in earnest today, and I’m sure there will be feelings. When she has worn it for short stints of time she feels pressure in various places and it’s hard to breathe normally. At least the plastic is leopard print so that is something. 

Sarah’s favorite book to talk about continues to be Blue Hat, Green Hat by Sandra Boynton. She likes to say she is the turkey who just can’t dress properly for the occasion. She loves it when we intone “oops,” especially when I sing it as low as I can and say I’m a foghorn. I got her a shirt with a picture of the the turkey standing in a hat. She loves it and, true to form with any new favorite shirt, wears it 24/7. 

At the conference, I amended Sarah’s name tag to read “Turkey” and then Amy drew a picture of a turkey with hair to represent Sarah. Amy amended her name tag to read “Team Turkey.” About seven years ago I attended this same conference by myself but this is the first time our whole family has come. I’m so glad we came. There were times when I felt overwhelmed by feelings, such as when I attempted to attend a talk by a neurologist. It was generally about how many kids with Sarah’s diagnosis have seizures. When they were about to show video footage of a seizure I realized I wasn’t ready to handle that. It’s still too scary and an ever-present concern that I feel in my own nervous system. So I went to the car for a good cry, feeling like I wanted us to pack up and leave the conference immediately. As I cried I realized that my heart was still somehow resisting Sarah’s diagnosis and fearing what it could mean for the future. I felt much better after I got my sad out. 

The whole group went to a baseball game Friday night and the experience helped me appreciate the conference bubble. It was only when out in the real world that I realized how wonderful it is to be surrounded by families who just understand our life in a way that somehow goes beyond words. Here we all are, with kids or adult kids of all ranges of ability and needs for support, with all different parenting styles and approaches, and yet all of us without a doubt loving our kids and doing our best to help them thrive, understanding any outburst of sound or behavior, and welcoming interactions of all sorts. While we usually experience welcome and understanding in the world at large, the ball game reminded me that not everyone understands when a girl pretends to be a turkey waving her wing at them. 

Amy connected with other siblings and listened to a talk by one of them. She also attended a couple of other talks. She and Sarah both enjoyed being in the kids room, and Amy has a new friend with whom she spent many fun hours. Carl and I connected with several parents, and we are all looking forward to attending future conferences. I now understand what other parents have talked about - that this is a new and instant family. 

Also, in case you hadn’t noticed, Sarah and Amy are the biggest goofs. On Friday Amy went to a trampoline park with other siblings. She practiced flips and came away from it with slightly skinned knees. Later she re-enacted getting the skinned knees and then Sarah copied her, both of them flopping face down in the hotel hallway. 

Saturday morning Sarah spilled a bit of hot chocolate on her new shirt. Amazingly, she handled it relatively calmly. She finished her breakfast and then we walked up the four flights of steps to our room (the elevator is broken) and washed her shirt in the sink. Then she waited mostly patiently as I ironed her shirt and waved it around to help it dry. Unfortunately there was no hair dryer in the room and though Carl was told at the front desk that one would be brought to us, it never was. But Sarah made it without screams or upset until the shirt was dry again. 

We now set off for a rainy drive home with good memories and eager anticipation for the next conference a year from now.