A Countdown of Seven Actions to Support SCN8A Children and Families
February 20, 2017
Helping families find the critical information and support they need
December 11, 2019
April 4, 2014
I am Elliott’s grandfather. My challenge is to help him develop his vision and gain some functional movement—a difficult and perhaps fruitless task—and more importantly to fully accept him at whatever level he performs. Grandfathers mostly observe and easily applaud grandchildrens’ natural, programmed physical development; my task with Elliott is harder.
In this task, I was reminded of God’s challenge to Moses at the burning bush, a challenge Moses did not want and didn’t think he could perform. I didn’t want this challenge either—I’d rather Elliott be fully functional. But I accept it and hope I can perform my role well. I am heartened by the words spoken to all Israel and specifically to Joshua before they entered the Promised Land: be strong and courageous. For me, the words mean I must stay strong to support Elliott’s primary caregivers—my daughter Gabrielle, son-in-law John and my wife JayEtta—and to keep working with Elliott myself. Courageous means to avoid, or quickly recover from, discouragement. But the “Promised Land” may not “flow with milk and honey,” it may just be acceptance of what is.
Perhaps providentially, I am a massage therapist. I was without a calling. Now I have one. I give Elliott pleasure and therapy—with massage, and vision and muscle exercises. He doesn’t make eye contact, doesn’t respond to speech, and doesn’t really play, so this is how I communicate. I get close. I straddle his legs with mine. I put his feet on my pelvic bones, to resist his (probably random) kicks. (This is his only, ever-so-slight, locomotion.) I knead his muscles; I work his joints; I tap his skin. With him prone (in “tummy-time” position) we together lift his head, stimulating head control. I massage the head-control muscles in his neck and upper back. I try palm rubs to stimulate grasp. I set up vision therapy—focus on simple objects: his red salamander (Sally); his yellow “monkey man,” or a red shiny disk. Most of the time—moreso lately—he coos, gurgles, sighs and smiles. I am encouraged.
Sometimes sadness grabs me. I cry—then shrug it off. I pound the walls in anger—it helps. I take support from family, friends, and peer counselors. I attend daily synagogue services, pray for healing, and for strength to his caregivers. I ask: “Can I let go of any expectations that he hold up his head or make eye contact?” Are they just my expectation, not his? I acknowledge that the distresses I feel are just mine, not his. They are prompted by my loss, plus my old pain that his condition brings up for me. Maybe he’ll feel differently. He does seem happy. I can still be happy too.
I am heartened by how Gabrielle, John, and JayEtta function, despite his endless needs. Always cheerful and sweet to him—his failure to perform provokes no expression of frustration. And I am heartened by steady support from Elliott’s aunts Shoshana and Maliya.
I notice that Elliott is a gift; I’m glad he is here.