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.
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