Sarah Rise Weekly Updates

Amy and I heard chanting coming from the bedroom where we thought Sarah was already asleep. It took some time to parse the words because they seemed so inconceivable. Sarah was chanting, along with a family in a YouTube video, “Blood draw! Blood draw! Blood draw!” Yup, our little lover of crying babies and hospitals… Read more »

A week ago Amy and I attended a performance of A Winter’s Tale on a night that merited such a label. The day had been snowy, allowing Carl and Amy to have fun sledding while Sarah and I had a cozy nap. Monday morning was then so cold that the girls each had a two-hour… Read more »

Hi, I’m Mice Door. Do you have a last name? My last name is Door. D-O-O-R. The above lines are what Sarah said as I drove her to her weekend retreat, catching me by delighted surprise as she always does. The concept of surprise has been on my mind this week after a conversation with… Read more »

Sarah slept quite soundly and didn’t have any of the issues we have been experiencing since July – and of course this happened when we were staying at the hospital for her to have a routine 24-hour video EEG. I am so glad the issues are seeming to magically resolve themselves as mysteriously as they… Read more »

A mermaid, a turkey, a tiger, and a butterfly all walk … out of Amy’s room. I told you we never know what she will look like when she emerges. Even on a day when she doesn’t have time to do elaborate face paint, she still usually has eye shadow and sparkles to match her… Read more »

It was not the best of times, it was not the worst of times. I suppose this could often be said of many situations, but in this moment I am referring to Sarah’s sleep this past week. In addition to the weighted blanket, Sleepytime tea, and one of us sleeping next to her, I bought… Read more »

Sarah’s sleep saga has continued and evolved in unexpected ways. I had been wondering for a while about trying melatonin for her and I finally reached out to her neurologist to make sure that wasn’t contraindicated based on her anti-seizure medications. The neurologist gave the go-ahead to try her on 3mg of melatonin. I started… Read more »

This morning I had to wait to write until I felt open in my heart and mind. Last night was not easy for Sarah regarding sleep, which meant it wasn’t easy for me or Carl either. Unfortunately, we have a case of The Boy Who Cried Wolf, otherwise known as the Girl Who Called For… Read more »

Apparently I did not parenthetical quietly enough! Sarah’s trouble falling asleep, calling out for us, and getting out of bed many times per night was back in full force. Next time things get better I may need to keep it to myself for longer! Sarah’s newest love is the computer mouse. One day in school,… Read more »

(Sarah’s sleep has been better. This may be due to my repeated suggestions that she stay in bed after Carl or I say goodnight to her, along with the repeated practice of not responding to her if she calls out to us. Some nights she hasn’t called out at all. Some nights she has stayed… Read more »