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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.

Shabbat Shalom,
Alexia and Scott

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6 Comments on "Scattered"

  • Susan B says

    Thank you for the update – it can be such a dizzying blur trying to be present for the needs of our children (and aging parents in my case) and your journey has been fraught with some very challenging battles.  I so admire your perseverance and love.  I have been to many bar and bat mitzvahs of friends' children, and I find the celebration of community, family and individual strength  and goodness to be so uplifting and inspiring.  I wish you a beautiful, renewing gathering, and comfort and ease knowing that Ethan will be well-cared for while you are away.  xoxo

  • Mark S. Anshan says

    It's very important to share family simchas and you and Scott need to be with the family in Seattle.  Ethan will be well taken care of and you should – as best you can – enjoy the time.  Thinking of you and Ethan.



  • Deb Kadish says

    We'll miss having the boys here, but are so excited to share Gabi's big day with you!  XOXO

  • Michael Katchman says

    Scott and Alexia:

    ENJOY the weekend!!

    You deserve some fun in your lives!!

    Have a few drinks and party the night away!!

    Prayers are with you and your family!!

    Wishing you a GREAT trip!!

    Michael and Bridget

  • Adrienne Davidson says

    Scott & Alexia:

    I hope that you two can seize this opportunity to enjoy a well-earned break. Get out to that bat mitzvah, have a few drinks, and "scatter" all those tweens off the dance floor with your not-so-smooth moves!

    Remember, if Elyse isn't embarrassed, then you haven't done your jobs.   ;-D

    Hugs to Ethan!


  • Nance A says

    Your coming means the world to that young lady. Looking forward to meeting you. 

    HaMorah Nance 

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