He will need lifelong care and will never live on his own. He can’t speak, so someone will always have to be his voice and make sure he is never mistreated. He needs help with bathing, brushing his teeth, shaving his face and getting dressed every single day. He doesn’t know how to blow his nose, make his own food, or even wipe after using the restroom. Someone will always have to do those things for him for the rest of his life, because that is what living with Stage 4 autism is like.
Sometimes it feels like we are swimming in a giant ocean with only a tiny life raft to get us through the storms that constantly come and go in Dawson’s life. We are thankful when the waters are calm, but we are prepared for the next storm looming just around the corner.
We have no idea what is ahead for him physically, or what we will do once he has to leave high school at twenty-one. The storms are brewing and will eventually hit us. Our tiny life raft has managed to keep us afloat, even when I felt as if I could not hang on for one more minute. But for now, the waters of Stage 4 autism are calm, and I will continue to hold on tight for Dawson as long as it takes, and wherever it takes us.
Dawson has profoundly changed me as a human being, and his autism has brought me to the brink many times. But his autism has also taught me more about love and patience than anything else ever could. Dawson’s autism may have been a contributing factor to the downfall of my marriage to Greg, but it was also the contributing factor to us getting back together. Dawson will always be my hero, just by getting up and living each day—with a voice that has been silenced and a body that continues to test him. He does it with a smile on his face and always with a ribbon in his hand to comfort him. This boy is my whole heart.
Last but not least, there is Greg, aka Zeke, the love of my life. By now everyone knows just how insanely in love I am with that man; I wrote an entire book about it. I can’t imagine my life without him, and the fact that we got a second chance is something I will never, ever take for granted. He is my forever love, my best friend, and the person I will grow old with. He fills me with contentment and provides me with an indescribable feeling of peace. We are living our lives together once again, and we will continue to care for our special boy together, until we no longer can. We get to be grandparents together and watch our daughters navigate through their own amazing and sometimes bumpy world together. Together is where we were always meant to be.
While we no longer have millions of dollars, the big fancy house, or the glamorous lifestyle we once had, I could not be happier. We are no longer expected to pick up the tab, bail people out of a financial crisis, or make huge donations. I find pure joy in movie night or a Dateline Mystery marathon at home with a bowl of popcorn and a box wine for dinner with Greg by my side. I love coffee or Happy Hour with girlfriends and, most of all, simple family gatherings with our kids and grandkids. All this, well within our budget.
I look back and feel truly blessed at the life I have lived so far, even with all the painful moments that were sprinkled in. Naturally, there are things we all would like to do over; but without the hard times, the good times would not feel so special. While I look back with a smile on the glamorous early years, I am beyond grateful for my beautifully regular life now, including my complicated past, and I would not trade it for the world. I am human and far from perfect, and that is more than okay—something I never would have said years ago. Most of all, I feel joy once again and am no longer consumed by fear of the unknown. I have truly rounded home, and I am right where I was always meant to be.
About the Author
SARAH SWINDELL LIVES IN THE Austin area with her husband, Greg, a former Major League Baseball player and 2019 Texas Sports Hall of Fame Inductee. Sarah is a commercial actress/model and has been working in the industry for over thirty years. She enjoys spending her free time with her four grown children and several grandchildren who reside in Texas as well. Sarah is an avid moviegoer, loves yoga, true-crime podcasts, and advocates for children and adults with autism and other disabilities. Her son was diagnosed with severe autism at the age of eighteen months and continues to touch peoples’ hearts to this day.
Rounding Home: A Memoir of Love, Betrayal, Heartbreak, and Hope with an Intimate Look into Raising a Child with Severe Autism Page 22
