My wife got on this blog kick first. Last summer, she launched Puzzled: Raising a Child with Autism & Other Pieces of Family Life. In one of her very first posts, she shared an amazing perspective on her faith intertwined with raising a child with special needs.
In honor of Jewish Disability Awareness Month, I am sharing Deborah’s message here:
“The whole world is a narrow bridge, but the main thing is not to fear.” (Reb Nachman of Bratslav)
Navigating life on the autism spectrum involves a series of long & winding roads, uphill climbs & every now and again, a bit of smooth sailing. Unfortunately, you don’t receive any kind of roadmap when you arrive in “Holland.” Sure, there are lots of people there to point you in any number of directions, but you often feel like you are simply flying by the seat of your pants, trying to find your way.
Some of the hardest roads to travel are those that leave you feeling emotionally lost. You climb to the top of the worry hill, then coast down the road of relief. You turn to push your child forward, then fear that you should hold them back. You gaze upon the street of dreams & wonder if you should even walk there. You try to look ahead down hope street, but first you must cross over your fears. You journey onward with your child knowing that for every step forward, somewhere around the bend, there will be a step back. It is a tiring journey, fraught with emotional pitfalls & detours. You have moments of sheer joy, optimism & pride followed by moments of angst, sadness & doubt.
And while there is no roadmap to this journey, I do believe there is for each of us, a compass. It is faith that can serve as our compass; faith in people, in friends, in our children & in ourselves. I also believe that the true guide on our journey is our faith in God. I have turned to God often during my life on the spectrum. When I am depleted, I ask for strength. When I am full of fear, I ask God to help me find hope. When I am out of patience, I ask God to help me dig down deeper & find just a little more. When I focus only on the struggles, I ask God to remind me of the blessings. And when I have lost my way, I ask God to be my compass. Sometimes my tears serve as my prayer, other times it is my smile. Sometimes I lash out in anger & other times I sing with joy. And sometimes these are the words that I share with God as I cross the narrow bridge…
A Prayer for a Parent of a Special Needs Child and for All Parents of All Children
(From the book “Talking to God” by Rabbi Naomi Levy)
Help me, God, to embrace my child as she is. Teach me how to raise her in love, joy & confidence. Show me how to help her realize all of the gifts You have placed inside her. Prevent me from pressuring her to become what she can never be or does not want to be. When I find myself mourning for what she is not, open my eyes to the holy blessing that she is. When feelings of jealousy surface toward other parents, soften my heart, open my soul. When my patience wears thin, calm me with Your comforting presence. When I feel as if I have no more to give, be my strength, God, abiding & unending. When I hover over my child too closely, remind me to step back and make room for her to fly. If she should fail, teach me how to encourage her to try again. When others are cruel to her, place words of wisdom & comfort on my tongue and place fortitude in her heart. Help her, God. Watch over her. Protect her from harm. Shield her from frustration and hurt. Fill her with pride, God. Teach her to stand up for herself. Grant her good health. Bless her with true & enduring friends. Nurture her awesome potential, God; let it flourish & become manifest. Let her be happy, God. Surround her with Your love. I thank You God, for giving me this very child. She is a gift of God, a precious child, a rare soul, a miracle. She is Mine. Amen.