We had a beautiful evening celebrating Kabbalah Experience this past Thursday night at the Loup JCC. Many people asked me over the weekend whether I was still floating in the clouds. The decorations were balloons in the shape of clouds, simulating a dreamlike atmosphere for hearing about Dreamwork from our speaker, Rodger Kamenetz.
As part of our evening of celebration we showed a short video about a “Kabbalah Moment” that you can view above or by clicking here. You will be introduced to a family who all share a rare disease—it is commonly known as brittle bone disease—its medical name is Osteogenesis Imperfecta (OI). It was not explained in the video that the parents, Chris and Lisa sought to adopt a child who had this condition—and were matched with Anicee, described by those who knew her in her native country of Belize as a little girl possessing an unbreakable spirit.
Bones for a person with OI are extremely fragile. Their spirit though is of another essence.
I visited Chris in the hospital today. Seeing him in person is very different than viewing him through what a camera captures. He is tiny. His body looks so frail. I wanted to brighten his day—he was not able to attend our event and had yet to see the video. I looked into this man’s big eyes; behind glasses situated on his disproportionately big head and I saw pride—in the story told of the bond between himself and Anicee and the synchronicity of meeting his pre-school teacher after 30 years.
Modern medicine and technology have been a big aid to Chris and those who are challenged with OI. Still I marveled at the patience required of Chris to carefully navigate the world from the command post of a highly sophisticated wheelchair. I told Chris that we insisted in keeping his laugh in the video—and he laughed again. This brought me great joy and on leaving his hospital room a reflection on this week’s Omer count—the week of Netzach (perseverance).
If we are to overcome obstacles—the meaning of Netzach-perseverance, then we must possess some measure of the indomitable spirit of a person with OI. Chris and for that matter Lisa or Anicee could be of great help to the many who are left without legs or disabled in other ways from the bombing in Boston yesterday. They can share stories about the marathon of daily living, stories about brittle bones and a story about a spirit that is unbreakable.
I descended quickly from the clouds. Down into the clouded reality of Boylston street. Down into the clarity of Chris’ world. A moment in the clouds and now back to work.