Thank you so much for your midweek support regarding Sarah’s seizure. Whenever I reach out midweek like that and the support pours in, coinciding with Sarah fully recovering, and I feel better, then I have moments of feeling like I shouldn’t have asked for support. I feel like I should have kept it to myself and immediate family until the time of this update. Why?! I have no idea. Perhaps because there is a societal love of being strong and stoic, as if stoicism and keeping things to oneself is actually the same as being strong, which it’s not. I don’t know. What I do know is that it helps. Maybe the reason I started feeling better so soon was because I didn’t keep it all to myself. Maybe being strong is being willing to let the emotions pour out and asking for help and then bouncing back resiliently. Maybe it doesn’t matter whether it gets labeled strong or not. Maybe the important thing is just noticing what works for me. So I thank you all for helping with what works for me.
When Sarah had her seizure in December, it took her all day to regain her normal speaking and walking. Maybe that seizure was more intense (it seemed that way) and/or maybe it helped this time that she was allowed to remain at home and just sleep. I think this one was also less intense because she was speaking and moving normally in very short order. I spent the entire rest of the night barely sleeping and jumping protectively at her tiniest sound or movement. Some of the time we were in my bed, but then she moved back to her own. I placed myself on the floor next to her bed and there was one moment when she started moving and half fell out of her bed. I helped catch her but quite awkwardly with my arm so it has taken a few days to feel like everything is normal in my shoulder joint.
The ridiculous thing about the timing for the seizure is that I had just been informed that her camp and school couldn’t have her attend if she needed the anti-seizure just-in-case meds with her at all times. Because then they would need to hire a full-time nurse. My waving that requirement wouldn’t suffice. I contacted Sarah’s neurologist the day before her seizure and asked for a letter revoking her need for the prescription to be with her at all times. He said he would send it. Then she had her seizure. Then I told her camp what had happened and since I didn’t yet have the letter and since she had just had a seizure, I needed to be there for her to attend camp. Some people suggested I could just stay home with her. Either way I would have had to cancel my plans. Sarah talks about camp all year long and loves it dearly that I opted to hang out in a spare room. I was granted time to get things from stores that were within a 5 minute radius so I could get food. I also got a blanket and pillow. (It is just a day camp, but I wanted to be able to nap.) At the start of that day, being sleep deprived and frustrated at needing to cancel my plans, I was full of tears, crying hard in the car before getting my supplies. Then I settled in, and I think it was actually a perfect way to make sure I rested. There wasn’t much else I could do! I did email the neurologist again to ask for the letter right away and say, “Oh, and by the way, Sarah just had another seizure.” I was worried he would change his mind about the letter, but he didn’t and I had it ready to deliver to camp the next day.
Since Sarah was completely herself it was easy to be relaxed about her during the day. As evening approached I was filled with panic and dread. How could I sleep?? Yet, how could I not? It’s not as if my vigilance would actually prevent a seizure and she hasn’t actually needed to be protected in any way when they happen. Still. She is still my baby. I found a book that focused on a Christian Science spiritual perspective of life and read that by flashlight in my room. I couldn’t bear to close my bedroom door to have the regular light on and I couldn’t bear to be downstairs and I couldn’t bear to close my eyes. Eventually the reading helped me be calm enough and tired enough that I did sleep. Sarah eventually joined me in my bed and had the sort of fitful sleep she often has when Carl is gone. This includes periodically jerking upright with a snort and then settling right back to sleep. I do not settle right back to sleep! For the second night post-seizure I somehow was completely at ease. I remembered how long it took me after the December seizure to regain my calm at night and I decided I didn’t want to wait several weeks again and that I could just go back to normal.
I do have hope that once again this seizure was a result of new supplements started a week ago. It is probably an overreaction to say we will stop seeing this new naturopath and stop all the new supplements and not see a naturopath again. Or maybe it is just right. This mama-bear has had enough.
Enough about seizures…We have Mom-Mom and Pop-Pop visiting and it is wonderful. They haven’t seen the girls in several months and they are blown away by how verbal and confident Sarah is. When they comment on things with amazement it is interesting to note that part of me is thinking “Oh, ho hum, yes, she’s been doing that forever now.” Yet of course it hasn’t been forever. It is wonderful to have things that at one point seem like miracles become common place. That in itself is perhaps a miracle.
This morning the girls and I went out to breakfast at the Square Cafe. Our timing couldn’t have been better if we tried. When we walked in, there were Sonia and A.! So we had a breakfast date without even meaning to. The girls did a much better job with the walk than I expected. On the way home they played hopscotch (well, they hopped around) on some patched areas of sidewalk and they sang their “Little Lost Kitty” duet. I realized recently that I need to start letting Sarah order for herself at restaurants. I can clarify any extra details if needed, but there is no reason she can’t order.
Lots of love and appreciation to all of you. If you are ever having a hard moment, let me know and I will send you lots of love.
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