My Son Has Fragile X Syndrome--And a Surprising Connection to Prayer – Kveller
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My Son Has Fragile X Syndrome–And a Surprising Connection to Prayer

When my son wakes up in the morning, he immediately asks for two things. First, he needs his chart, a small white board with two strips of Velcro and tiny laminated pictures that he organizes with his morning routine. Second, he needs his “benscher book,” the once-beautiful-now-torn-and-chewed-and-duct-taped book of Jewish songs and prayers that we gave to guests at our wedding long before our son was a twinkle in my eye. He is attached to both of these items–they provide comfort and routine, a way to escape the chaos of our family’s typical morning rush.

As a parent of a child with disabilities, I might be able to leave it at that, as we have several tools throughout the day that help our son feel safer and more at ease. But I am starting to realize that my son’s attachment to his benscher book has much more meaning for him, and perhaps for me as well.

My son has Fragile X Syndrome, a genetic disorder that is linked to Autism and inherited intellectual disability. He is only 4, so despite my initial (and sometimes recurring) grief over his diagnosis, my husband and I are holding out hope that he might live a “normal” and fulfilling life. We still don’t know if he will drive a car, go to college, or get married, but for now we’re focusing on him learning the ABC’s.

There is one area, however, where my son has far surpassed his peers, and frankly, many adults: he loves to pray. He is so committed to his prayer routine that he davens from the minute he wakes up. He grabs the benscher book, usually begins with an announcement to his “congregation” (“Shabbat Shalom, page 26”), and then starts to daven. It is incredible to watch a 4-year-old with obvious learning, speech, and developmental delays, singing words and melodies of the Shabbat morning prayers. As he prays, he sings out loud, sways side-to-side, bows, smiles, and gallops around the house. He is so happy, so fulfilled. One can’t help but be swept up by his expression of faith; I find myself humming his tunes all day (which is both sweet and annoying, I’ll admit).

Our child’s commitment to prayer is helpful to him, and to us. For him, this has become a way to express something, though I am not yet sure what it is he is expressing. I know it has helped him feel more comfortable in our synagogue, and since I am one of the rabbis in the synagogue, perhaps it helps him feel closer to me, as he ascends the bima each Shabbat after services and emulates me by conducting his own service, with more bowing, praying, and of course, announcements.

For me, my little boy’s faith has helped to deepen mine. It is incredibly challenging to raise a child with disabilities–from physical stress to financial loss, from emotional pain to spiritual emptiness. My husband and I have experienced all of these challenges over the years since his diagnosis. We know these challenges will continue.

But my child’s praying, and his passion for Judaism, is contagious. He is literally reminding me every day to be grateful for our blessings, and to sing to God with gratitude, awareness, and passion. His faith has brought a little faith back for me, and that is truly an incredible gift.


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