That's the feeling of the day/week/month. We spin in our own circles of work, therapies, doctor visits, school, extra-curricular stuff, etc. At the end of the day we often look to each other and say, "What happened?"
Working with Ethan is physically and mentally challenging and we eagerly collapse into bed each night. Yet we push forward and see that gradually there are some small, noticeable changes. The way that Ethan seems more present at times in conversations; the way he reacts during familiar times, like Shabbat; the more comfortable and tolerant he is during therapy sessions. While these are positive observances, we are all still waiting for…more.
Today Scott, Elyse and I are heading to Seattle for the bat mitzvah of our niece Gabi. We are grateful to my mom, Stella, for coming out from California to be with Ethan and his fabulous team of nurses.
Zak has headed off in a different direction–he's at Washington University in St. Louis on a Scholarship Weekend, and then will join us in Seattle.
I thought it was exhausting preparing to go away in December, and Scott was home then. This time was over-the-top, as it's the first time we are both going to be away (quite a distance, too) from Ethan for several days. We have prepared as best as we could and we pray for an "easy" time for our team at home.
A flood of emotions courses through my body, but for this moment I will focus on the young lady who is becoming a "daughter of the commandments" this Shabbat. Gabi has lovingly and selflessly chosen as her bat mitzvah project to fundraise for her cousin Ethan, in an effort to make his life more comfortable. We are grateful for her generosity of spirit and for her strong sense of family.