Jamie Sumner - Eat, Sleep, Save the World: Words of Encouragement for the Special Needs Parent

Copyright 2020 by Jamie Sumner

All rights reserved.

978-1-5359-7108-9

Published by B&H Publishing Group

Nashville, Tennessee

Dewey Decimal Classification: 649.8

Subject Heading: PARENTING / DISABILITIES / PARENTS OF HANDICAPPED CHILDREN

Unless otherwise noted, all Scripture quotations are taken from the Christian Standard Bible, Copyright 2017 by Holman Bible Publishers. Used by permission. Christian Standard Bible and CSB are federally registered trademarks of Holman Bible Publishers.

Also used: New International Version, NIV Copyright 1973, 1978, 1984, 2011 by Biblica, Inc. Used by permission. All rights reserved worldwide.

Cover design by Tim Green, FaceOut Studio. Imagery Amy Covington/stocksy and Hong Vo/shutterstock. Author photo Bethany Rogers.

For Gigi

words are not enough

Typically, acknowledgments are filled with the people who make a book possible. But I cant do this properly without first acknowledging the people who make my life possible:

Charlie, I wouldnt have dared write a word of this without you. You made me a mother and taught me how to let go of my agenda for life. You brought me closer to the person God intended me to be. I am so proud of all you have accomplished and cant wait to see what you will do next. It will be remarkable, I am sure.

Cora, Jonas, you two made our family complete. I love your energy, our chaos, and how you care for your brother. The way you love him is how I wish we could all be loved.

Jody, your support of my writing and our family makes it possible for me to tell our story. Without you, there would be no story. The last eleven years have been a wonder. Heres to many more.

To all the parents and therapists at High Hopes preschool, thank you for creating such a special place for special kids. And to Jill, Charlies first SPED teacher as a fully-fledged kindergartner: you are the one I prayed for. Thank you for pushing him to show the world how smart he is.

Lastly, the grandparent force is strong in our household, and I am forever grateful to Jan, Jim, Judi, and Glenn for spoiling my kids.

Now for the people in the book business who brought this story to its fruition:

Keely, you know how much you mean to me. Thank you for being my agent and believing in this book through all the bumps and turns in the road. Weve done a lot of good work together, and I cant wait to see what comes next.

Ashley, I didnt know what Id lucked into at B&H in getting you for my editor. Your knowledge of the Scripture is unparalleled. You are hereby and forever my theology fact-checker. That combined with your heart for kids like mine was a knockout force of editing prowess.

Writing is a solitary act. Parenting often is as well. So I am doubly grateful for my fellow writers whose kids have special needs. Alethea, Jillian, Valli, Calleen, Mia, Brynn: thank you for doing all you do while going about life in disguise as ordinary humans.

Lastly, to the families of children with special needs who read this book: I pray it brings you comfort and solace and joy and peace and strength and whatever else you might need today. I am grateful to know you are in the world and that we can parent together in Gods grace.

It took more than four hours to disassemble my twins toddler beds and reassemble them into beds for full-sized humans. It shouldnt have taken this long. What is a series of boards and bolts and screws when up against a woman armed with an Allen wrench? Perhaps, if the directions had not been smudged photocopies of photocopies, I would not have screwed the frame in upside down. If the nuts and bolts did not have to be inserted into tiny, pea-sized holes, it all could have gone smoother. If I had waited for assistance rather than insisting that I do it on my own, perhaps I would not have ended up with bloody knuckles. Then again, maybe not.

If things had gone a thousand different ways, perhaps I would have appreciated the momentous occasion that was the final transition from baby to kid. But instead, my husband, Jody, and I finished the last touches on the beds, literally ripping the plastic off the mattresses, one hour past bedtime. The kids were weird and wired in that way that kids get when they wander into uncharted hours. They jumped excitedly, literally bouncing off the walls at 9:00 .m. And me? I sat on the floor and considered my options: Cry? Sleep? Take a picture so I could look back more fondly on this moment than I was just then?

This is how it always is with me in the big moments, especially with Charlie, their older brother, who has cerebral palsy.

Whenever he crosses a developmental rung on the ladder, I am caught wrong-footed. I am so worried about the twins wandering off at the park that I miss his unassisted sitting until he topples over. I am struggling with my phone, trying to get it to record, when he takes that first step in the gait-trainer. I am holding him in my arms and talking to one of his aides at school and do not notice that he is signing for more, more kisses, and so I feel bereft when I finally see it and hes moved on to wanting more of something else. I miss the magic of the moment.

When he finally learned to chew properly, it wasnt me who taught him. It was his feeding therapist in his preschool classroom to the applause of all his peers. Chew, chew, chew! they cheered, and he did. When he finally stopped using his speaking device as a really fun iPad and actually began to communicate with it, he was also at school. According to his speech therapist, he introduced himself to a group of touring parents. Unprompted, he typed out, Hi, my name is Charlie. This is my speaking device. Of course he did.

If Im not careful, the guilt can build quickly, like rain that swells a river and finally breaks the dam. There are so many options at hand for this kind of self-recrimination. Parents are great at this. Parents to children with special needs are perhaps the best at it. Because we have to do more for our children, we feel it acutely when we let them down. When we fail to properly celebrate the milestones or simply dont engage as much as we could, we feel it like a hunger pang.

And yet, if I zoom in on a different still-shot of this life we are living, I see all that I am doing. I did put those beds together like Wonder Woman with sheer force of will and a teeny tiny wrench. I did fight the insurance company for that speaking device, and I did catch the next ten steps in the gait trainer and the criss-cross applesauce sitting in the park. I continue to chant chew chew chew at home. And I give the hugs and the smiles even when Im bone-weary, even when it is an hour past bedtime, even when the days run together and I forget to take that picture of the first night in the big kid bed.

When I look at it from this angle and in this light, I begin to see the magic and let the guilt go. This is what Eat, Sleep, Save the World is all about. It is about learning to flip your perspective so you can see what you are doing right. In the six sections that follow, I hope you can begin to see that God has gifted you with the determination, hope, resilience, patience, laughter, and thankfulness you need to excel in this parenting game. This book is meant to be a source of encouragement and camaraderie and spiritual support so you remember that with Gods help, you are a superhero to your child.

Determination

noun

firmness of purpose; resoluteness

synonyms

willpower, strength, decidedness, steadfastness, boldness, courage, persistence