A Bar Mitzvah Tale Of Two Sons

Living in the north country of New Hampshire has been both challenging and rewarding in a long distance runner kind of way.

Almost 13 years ago, when our twin sons were two, we moved to Sugar Hill, NH, north of the Franconia Notch so that my husband could start a medical practice. The hospital CEO who was jewish, was also an officer in the small congregation in the area. I am a cantor. He wanted his son to have a bar mitzvah. I became the “spiritual leader” of the congregation and performed 5 bar and bat mitzvah ceremonies the next spring, started a pre-school and led worship services and life cycle events for the next five years. In the meantime, our son Jack was diagnosed with Fragile X Syndrome and Aden was later diagnosed with Koolen deVries accompanied by a severe seizure disorder that took years to get under control. Unfortunately, the congregation was unable to help incorporate our children meaningfully. So after unsuccessfully attempting to create an ISP (Individualized Synagogue Plan) with the lay leadership to help with integration into the fabric of the community for one of our twins, we disaffiliated.

Over these years, the area schools have largely been responsive if not always receptive to our advocacy for inclusive public schooling for our sons. When I stop to think about this, it takes my breath away. Many wonderful people through the years worked hard with our sons both in the schools and the community. Personally and professionally, I have been able to work with local clergy and community folks on local projects as well as sing and share all kinds of music, including jewish melodies with local churches and hospice fund-raisers. And in the gorgeous mountainous countryside, I can find solace in blueberry crops and cross-country skiing out our back door.

But it has been very isolating. As Jews, we are in a tiny minority here. We have no extended family nearby and were left with no congregation. As parents of two children with significant challenges and having no “typical” children, it is hard for each of us in our family to make friends, and when we do, it takes a lot of planning to socialize with them.

So you can imagine my dread when I set out to plan a double bar mitzvah for our sons. Honestly I was angry about having to do it all…the planning, from the invitations to the party; most of the teaching, though my husband was a dedicated teacher along with me from the start; the worship planning and officiating without the support of any jewish community to speak of. We do join with one family twice a month for worship at our home, so we didn’t even have a place to conduct a worship service for a congregation!

But how could I not do this for them?

As the time drew near, I realized that as their mother and a cantor, this was a great gift I could give Jack and Aden. Howard and I are, at the core, a great team, and together we could succeed at making this work. We both wanted this event to reflect and celebrate the spirit and growth of our sons and make sure to invite those who were part of or appreciated that process.

As the day grew closer, Howard and I began to regret we invited so many people. Jack doesn’t like to enter the dining room if the table is full, never mind being the center of attention in front of a crowd. Each day leading up to the big day saw something new and different go wrong. From discovering a raccoon family dwelling in the cupola of our barn, raining excrement down onto the floor where we planned to host the music and dancing, to fearing our local Meeting House wouldn’t hold all the people we already invited to the service….perhaps calling the whole thing off would be preferable. To lighten the mood, Howard and I became our own prophets of doom…”It will be 100 degrees.” “Lightening will set the tent on fire.” “The barn floor will collapse”. But just like in the movies, (you know the ones like “Parenthood”) everything moved full speed ahead anyway and miraculously the stars began to align like Good Karma instead of a Night Terror. If we had paid closer attention to jewish numerology, we might have been more convinced we would prevail. This was the 18^th year of our marriage.

Our “synagogue” (the town Meeting House two doors down from our home) was stripped for repainting so it looked like an abandoned home. Inside we set up folding chairs with their backs to the stage to face east. The congregation now would face a somewhat dingy wall with two large bulletin boards. Just before the service, in the throws of a light-hearted and generous attempt to improve the view, my brother Dan took the random pastel-colored thumbtacks and formed the boys’ names with them. The blue painted ark, built by a neighbor and decorated by our sons and the two boys from our monthly worship group, was placed on a large table in front. It housed the borrowed Torah. If not for the ornate piano on the stage which once belonged to Bette Davis, a decorator might ponder our makeshift sacred space and with a dismissive gesture declare it “High Sugar Hill Shtetl.” We declared it perfect.

My hidden dream came true. I say hidden because my dream for the event was hidden even from me. Yes, everyone came, the home-baked goods showed up, parking for 183 guests didn’t disrupt our small town, the food was great and the live klezmer band was amazing. The weather was pleasant, one of the only days it didn’t rain in June. Old friends and family made the effort to come from 14 states to savor this day. All of these things helped make the day spectacular.

But the best part by far was the fact that both our sons shared themselves fully with everyone who came to see them. We weren’t even sure Jack would show up, but he ran the show! He played the drum and led the song with clapping hands and his winning smile. He recited his prayers and blessings as I gestured in sign language for him. He taught the congregation the Hebrew letters and numbers. He marched around with the Torah. Aden, who has a wonderful musical memory for melody and for language, and a speech impediment, read every Hebrew and English word with accuracy and with poise. He chanted his portion from the Torah like a pro. My brother Rick who has autism, opened and closed the ark doors like he’d done it all his life (has never). My friend’s daughter who also has autism, played flute with the other musicians: my cousin and two friends.

My dread that this event would become “the greatest worship service for the disabled of all time” was all for naught. Instead, most people said it was the best bar mitzvah they ever attended because the boys were simply themselves. This was the measure of real success for me. Several people asked me who the 15 or so teenagers were who attended? Did they all have a disability? Some appeared to have trouble comprehending that all the kids were from the local public school, and yes, all but one were “typical” peer classmates. Most of them have attended the boys’ birthday parties since kindergarten.

No, this was a service like many other services – full of participation, anticipation, nerves, some peaceful moments, learning, occasional laughter, emotion, the usual mistakes. Many here had never attended a jewish worship service or bar mitzvah before. Gustav from Denmark handed out the yarmulkas. My kids took leadership roles. EVERYONE was responsible for the atmosphere. NO one had a heart attack. Later an evangelical pastor locked ankles in a wild spin during the saxaphone solo with the dance leader and the barn floor didn’t collapse under the weight of the endless stomping (though it creaked with alarming regularity). It was a day when the extraordinary and the ordinary became indistinguishable.

If someone were to ask me to describe messianic times or a piece of heaven, I would describe this day and much of what led up to it too, in all its dreaded glory!

My voice teacher often said a singer should never “hold” a note. She should “sustain” or “allow” a note to be sung. I love these terms. To “allow” is to set free. It implies not just moving on, as in the expression “let it go”, but an opportunity for moving towards….a connection. I also like to call this “leaning in”. “Allowing” doesn’t force anything. It gently leans in as it lets go. It opens up opportunity. To “sustain” is to nourish or support.

On June 27^th, 2009, the day Jack and Aden celebrated their b’nai mitzah, the Mitz family had a respite from isolation, and the memories will sustain us. With old friends and newer ones, family too, our sons bravely allowed themselves to shine and connect in a loving environment where an entire community leaned in towards them.

May this quenching drink of water sustain the souls of our little family as we face the long run ahead.

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Today our sons flourish in their daily lives.  They each enjoy flexible, evolving but carefully built days of paid work, volunteer, social and learning activities according to their own pace and abilities.  However, the challenges of isolation and vulnerability that remain for them and impact those who love them are more daunting than ever.  Our societies have yet to fully embrace both the needs and abilities of people who need extra assistance. The operative word here……embrace.