June 24

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.

June 17

You may notice that I am going barefoot lately. That is because Sarah keeps knocking my socks off! She just seems to have a bit more fullness and clarity to her communication and a wider range of creativity. 

When Carl was getting the girls ready for bed recently:
Amy: Sarah, are you going to wear pajamas?
Sarah: yes! I am going to wear pajamas! Do you want to be twins?
(They proceeded to wear matching pajamas and socks. What amazed us was Sarah’s initiation of dressing as twins.)

Sarah had extra time with Sc this week and sitter A, both of whom bring gorgeous creativity to their play. Some SR time with Sc led to the creation of a menu on the SR room white board. When I did SR time later that day, Sarah would take my order and then say “coming right up!” She then scampered off to the bathroom or her room and returned a minute later with my pretend food in her hand. She also got food for various book characters. The hungry caterpillar got a green leaf, the Pigeon got a hot dog, the Duckling got a cookie, and Xander the panda got bamboo. When our time was up she asked to continue! That hasn’t happened in forever. The thing is, I was barely participating. I kept accidentally dozing. Then she would deliver my food and give me a kiss and tickles to wake me up. This is the first new game that has happened, at least during my time, in many months. I think it originated during her time with Sc. and just continued with me. 

Sarah had another session with Sc and suggested that the marbles at the end of the marble run were students in a school. They had the three schools of Amy, Sarah, and Sc represented. Sarah donned her non-prescription reading glasses to read out loud to her marble students. 

Saturday morning the girls sang a duet of a song they learned from piano lessons called “Little Lost Kitty.” Sarah sang it clearly all the way through the first time, in sync with Amy. She lost some clarity in her excitement/shyness the second time  because she was being recorded, but she still stuck with the song all the way through and gave a huge smile at the end. It was so super cute with both girls standing next to each other in matching shirts and pajama bottoms. I kept thinking about how far Sarah has come from from her stilted singing a few years ago to her mostly clear singing of today. Amazing. Seriously amazing. Both girls were beautiful, adorable, and ever so earnest.

I love how Amy rejoices in Sarah’s improving abilities. After her Anat Baniel session, Sarah told her practitioner to have a good summer. Amy probably saw my astonished look of delight that I directed to the practitioner. As we left, Amy said, “that was so great how Sarah said that!”

To celebrate Father’s Day weekend we decided to stay in a local hotel last night. I was taking a class in the afternoon so I joined Carl and the girls for dinner, after they had already enjoyed watching tv and playing in the pool. Dinner was lovely. The weather was perfect, we were outside so Sarah could watch traffic, there was a fence separating the seating from the rest of the sidewalk so I could be relaxed about Sarah being up and about, and there was a girl next to our table who loved art and cats so she and Amy had a small play date while waiting for the food. It was just a small slice of perfect. 

June 10

For a little while lately Sarah has been asking us to look at her drawings. Recently when I suggested that she could practice piano, she asked Grandma to be her audience. I love how Sarah increasingly wants to share things with us. Sometimes when things are how you want them to be it is easy to not notice them. Last weekend during the neighborhood party that happens annually on our street, Sarah came to tell us that she was going down the street to the police car that was available for exploration. Wow. That is really notable and amazing that she came to tell us. It was so in line with how we want things to be that we almost missed it. 

Grandma is in town now, allowing us to once again have a child-free weekend to attend a wedding. The wedding was that of a high-school friend. It was beautiful and meaningful and wonderful. It was also wonderful to catch up with high school friends, college friends, and friends from Carl’s grad school days. The weekend has been full of laughter, sometimes laughing to the point of tears. A huge thank you to the family and sitters who made this weekend possible. 

Amy unfortunately no longer likes the math game of simple problems to which Sarah purposefully gives the wrong answer. Amy thinks it doesn’t help Sarah learn, despite my explanations for why I think it does. I guess I can focus with appreciation on the fact that Amy wants to help Sarah learn. 

Sarah is officially done with second grade. When school resumes she will be a fourth grader! Still with lots of extra help and mostly in the resource room, but also still joining the neurotypical kids as often as makes sense for her. She will have her same core group of wonderful support teachers who love her and think about her so well. 

From G’s time with Sarah on Friday, he wrote:
“The urge to sing and be more musical hit me today after Sarah and I had built individual structures separately but kind of in parallel.  I made a tower out of that game that has colored columns and purple circles and Sarah made her newest favoritest marble run structure.  It’s simple but effective for her sensory purposes.  Lot’s of “Oh, that’s cool/nice” and similar comments from BOTH of us.

Then, reading.  Sarah read Mo Willems and asked me to rub her legs.  For some reason the original Oompa-Loompa song (Oompa...doompa...doompadeedoo...I’ve got a-no-ther pu-zzle for...you…) lodged in my frontal cortex and I quietly but clearly hummed it out kind of rhythmically as I rubbed.  I matched my hand movements to the song.  She stopped dead in her tracks reading.  Watched my face, my hands.  And when I hit the final note she looked up. “I liked that.”

Then she noticed a bruise on my thigh.  From my having run into my bed.  She questioned me, like a doctor might, about the circumstances.  She then found her own bruise, indicated that she’d fallen.  I was speaking very loosely to her, but also a bit extra...like almost as if we were in a play.  As if there were an audience.  “I so often run into my bed, Sarah.  It’s a problem.  Sometimes I run into other corners, like the table or chair.  You know.”  And she, “Yeah.  The same thing happens to me.”
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Amy came home with her journal from May. One entry seemed quite profound. She drew a picture of a girl outside at night with a star glowing in the sky. She wrote, “The yard is dark. The artist sees a star. She makes a wish for new paint.”

I just got a message from Sc who is with the girls now. She said they are playing school and that each girl took a turn reading to the class. Again, Sarah is doing so amazingly beautifully well that sometimes we almost miss it because we come to take her steady progress for granted. That is precisely why I write, to help myself continue to notice each tiny moment of amazingness as it quickly morphs into being normal. 

June 3

When I last wrote I was feeling uncertain about how the holiday weekend would continue. It was fine. It was even good. I let the girls play in the basement a lot. That is where we store toys that aren’t upstairs so it is kind of like going to a toy store. Except in a toy store they don’t open toys and spread the contents ALL over the floor. Amy played a lot with neighborhood kids. On Sunday we watched a movie, had dinner outside, and I made homemade oreos. They don’t taste anything like oreos, but they are delicious. Monday we did hair-trims at Supercuts, Starbucks, the pool at my office, Aladdin’s for lunch, Rita’s, face-time with Mom-Mom, extra tv shows, and more time with friends. So it felt like a great weekend overall.

One of the items in the basement is a set of math problem jigsaw puzzles, where the answer has to actually fit the problem. I put it in the pile of things to donate because I thought Amy was beyond it and Sarah wasn’t ever that interested. Later, I discovered that Sarah had done several puzzles of her own initiative! Correctly! So I will be keeping the puzzles for a while longer.

Somehow the girls created a game where Amy verbally gives Sarah a simple math problem like “7+1” and then Sarah responds with the purposefully wrong answer. Then they laugh and laugh. Amy added making a “eeeh” sound to indicate a wrong answer. Sarah loves this even more. What I especially love about the game, beyond just their bonding together so joyfully, is that it has Sarah having so much fun with math. Math is the hardest subject for Sarah and even just counting objects correctly is a challenge. I imagine this could feel stressful to her sometimes so I love that there is a way for her to laugh and play. Plus, she still has to think about the answer a little because sometimes she almost answers correctly and then has to stop herself.

While Carl was away, Sarah slept next to me all night every night. “Slept” is perhaps a stretch. She always wakes up a few times in a night, but she was waking up all the time. With a snort and a start and a sitting up. Then she would go right back to sleep and I would stay awake listening for signs of sleep apnea. Now that Carl is back, Sarah’s sleep is back to normal. This isn’t great, because she still comes in to see us a handful of times, but it is much better overall. 

Yesterday Amy attended a party at a climbing wall. She had a great time. I realized later that the picture I love the most has her sticking her tongue out in concentration. 

This morning I was feeling sad and Sarah sat down in front of me, looking at me and singing a song from Daniel Tiger about when you feel sad and then you feel better. It was very sweet. It did help me feel better.