Rounding Home: A Memoir of Love, Betrayal, Heartbreak, and Hope with an Intimate Look into Raising a Child with Severe Autism

by Sarah Swindell

  Some of his genetic testing lab work had come back and, of course, it came back with no definitive answers. He had genes of “unknown variance,” which basically means something was off, but there was not enough information to point to a specific disease. More tests were ordered, followed by more specialists who were not able to give us good information or provide a game plan on how to help him. My heart was breaking for Dawson, as he had no way of understanding why he was being put through so much. I wasn’t sleeping from all the worrying and the what-ifs. How bad was this going to get? How quickly would this progress? How long would he be able to walk? Was this something that would eventually take his life?

  Around that same time I became friends with Jenn. She was a beautiful blonde, an avid tennis player, and a loving, devoted mom to a son the same age as Dawson. A mutual friend of ours had introduced us at a neighborhood Happy Hour, and we clicked immediately. Our boys had both been diagnosed with autism at a young age and had very similar characteristics, except that Jenn’s son suffered from severe seizures, and he had some language. He had also suddenly started deteriorating physically with no medical explanation. They were going through test after test, many of the same tests that we were doing, seeing every doctor they could and, like us, never getting any real answers. Having a friend like this is very special. No matter how kind your typical friends and family are, or how much they listen to you cry, someone who truly gets it is an incredible gift. Watching your child suffer through life elicits emotions only someone going through the same thing can really understand. Jenn got me and I got her, and we quickly formed a bond that I will always cherish.

  Jenn’s son deteriorated quickly and, sadly, within a year after we became friends, he passed. I watched this amazingly beautiful family go through the worst nightmare of their lives, with more grace and courage than one could ever imagine. He passed with no real answers as to why his body failed so quickly and no name for what it was. I felt like her son and Dawson had started a marathon together, and out of nowhere, with no warning, her son sprinted right past him. I almost felt guilty telling her Dawson was sort of leveling off, not getting too much worse. I also could not help but feel that the very same thing could happen to us at any moment.

  All that was happening also made me think of my beautiful niece, Justine, who passed away from cancer recently. She was so young, in her early twenties, and I sadly watched my sister go through the same gut-wrenching experience with her sweet daughter. I have been through a lot in my life, but I can’t think of anything more horrible than watching your own child pass. Witnessing my sister’s heart literally breaking right in front of my eyes is something I will never forget. I had a sickening feeling that I might be getting a glimpse into my own future. I had now witnessed three people close to me lose a child. Sometimes I felt like the reason I was watching these families go through such tragedy was meant to be practice for when my own heart would experience the same grief. I don’t think I could ever be as strong as Karie, my sister, or Jenn. Seeing their faces go through the worst pain imaginable is something I will never forget. I know I will look back and draw strength from them, if that time comes.

  I tried so hard not to let my brain think about Dawson suffering any more than he already had. As horrible as it sounds, I prayed that if that time did come, it would be as quick and painless as possible. I could not bear the thought of him being in pain and not having the language to tell me how to help him and what he needed to feel better. It was, and still is, an indescribable feeling of helplessness, and by far the hardest part of having a nonverbal child.

  I became so wrapped up in trying to figure out what was happening with Dawson that I started to care less and less about my situation at home. I hung out at my parents’ house more because I felt I could really talk to them about my fears, and they always had loving arms to comfort me. I slowly stopped talking about my feelings to Kenny because all it did was lead to a fight, and I certainly did not have the energy for that anymore. I hated that I felt stuck in yet another relationship that I knew wasn’t working. I knew I should be trying harder to make it better, but just didn’t know how. I also didn’t understand why I really didn’t want to.

  As much as I tried, it was hard for me to smile and live each day pretending all was good when inside all I cared about, or had the energy for, was my own family and helping Dawson. I felt horrible for Kenny’s girls, as they deserved a much better stepmother than me, and I knew it. My little Austin home became the only place where I felt like I was okay and could just be myself, free from my own expectations and judgments. The holidays were coming, and I knew it was going to be challenging in a million different ways. I love the Holidays, but this year I was dreading them.

  Christmas 2016 came and went and we were still not making much progress with Dawson, but thankfully he wasn’t getting worse. His spine was still curving, but his energy level was consistent. We decided to go with the doctor’s opinion of waiting a bit longer before doing the surgery.

  That Christmas was difficult for me in so many ways, especially having to entertain like everything was completely normal. In the midst of it all, we hosted Kenny’s huge company Christmas party at our house. The past years had been fun, as I loved being the hostess; but this year I did not feel like celebrating anything and just wanted to get it all over with.

  Brenna and the baby flew into town after the New Year in 2017, and I was so happy to have them home, a welcome distraction from all that was going on in my head. Greg was in Houston at that time and had decided to make the short drive to Cypress to see our girls and, most of all, Wyatt. Elaine had also driven in to see them as well.

  Looking back, it was extremely generous of Kenny to allow Greg and Elaine to come over and hang out. It must have been a bit awkward for Kenny, but he never showed it. Kenny did have some wonderful qualities, and there were moments when I felt if I could just focus on those, all would be fine. Allowing his wife’s ex-husband to come hang out at his house while he was at work could not have been easy and was definitely a kind gesture I’m sure most men would not be thrilled about.

  We all sat around the living room laughing and playing on the floor with Wyatt. Greg’s mom even came by and stayed for a while and was so happy she was able to meet her great-grandson. I was surprised when Greg decided to stay after his mom and Elaine left late that afternoon, knowing Kenny would be arriving home soon. When he did get home, they shook hands and chatted as if nothing was strange about this very strange situation. We ordered pizza and played games around the patio table, including Kenny and one of his daughters. It was a pretty special day, even if it was a little unconventional, with all of us hanging out like we were one big happy family.

  By this time, I was really good at ignoring my feelings for Greg whenever we were around each other. I had accepted that we would never be anything more than just the parents to our children, and I had to be okay with that. I was so happy everyone was getting along, laughing together and enjoying each other for the kids’ sake and now for our grandchild. The two men in my life were sitting at opposite sides of the patio table, while my heart was still softly aching for the one it shouldn’t be. My heart was also wondering why Greg stayed so long that night, and why he didn’t leave when his mom and Elaine had left earlier that afternoon.

  I knew things were not perfect in Greg’s relationship with Elaine by the little things he shared with me over the years, including that night in the bar in Savannah; but I believed he was committed to her and I admired that. She was so good with Dawson, despite her financial issues. I assumed Greg simply overlooked her money thing because she showed such love for Dawson and cared so much about his well-being.

  She did so much for Dawson that was good, and I think we all appreciated that, including me. In the end, did it make the other things she did okay? I’m sure there are many different thoughts and opinions on that. We all make mistakes and to me, it’s admitting those mistakes, learning from them, as well as taking respons
ibility for them. If that does not happen, nothing can truly be resolved or forgotten. But all that was none of my business at that time, and I stayed out of it.

  A few weeks after our time together in Cypress, I was in Austin with Dawson. Having some unexpected free time, I texted Greg to see if he happened to have a leaf blower I could use. The spring leaves blanketed my driveway to the point I couldn’t even see the concrete.

  About an hour later he texted back and told me to come outside. I walked outside to find him unloading a brand-new leaf blower from the back of his truck. I almost didn’t know what to say, I was so surprised at his kind gesture.

  “Thank you! You really didn’t have to do that,” I said, with a big smile.

  “No problem,” he said, smiling back at me as he climbed in his truck and drove down my driveway, the leaves blowing in his wake.

  I walked back in the house thinking that something felt really different during that moment in the driveway. I knew Greg better than anyone in the world, and I knew there was more behind the simple gift of a leaf blower. He is a man of few words, but his actions have always spoken volumes, in good ways and in bad. If you are in Greg’s heart, it is the best feeling in the world. If you’re not, or you wrong him, he will kick you out and never look back. I had felt kicked out for so many years—was I now back in?

  He was softer than I had seen him in a while, and he looked at me differently. I started putting small things together: the time he programmed all the radio channels in my new car after I told him I didn’t know how to do it, and he was definitely texting me more than usual. Nothing scandalous or wrong, just short texts about little things, like a new XM channel he knew I would like, or something funny he saw on TV. On top of that, we were communicating more with everything that had been going on with Dawson. But it didn’t really hit me until he showed up with a simple leaf blower.

  CHAPTER 28

  GREG’S BEHAVIOR WAS confusing me. Together with all that was going on with Dawson and the stress constantly simmering at home in Cypress, it was a recipe for many sleepless nights. I felt like a strange storm was brewing in the ocean of my brain, and nothing would calm it. Kenny and I had a trip to Mexico planned, and I was really going to try and focus on him, try to relax and have some fun. Maybe this trip was exactly what we needed to get back on track.

  The trip ended up being a complete mess, and I was crying before we even checked into the hotel. I don’t remember the specifics, but I do remember thinking our situation was hopeless and it was never going to get better. How in the world did I get to this place again? His kids would be torn apart if I ever left, and I could not even begin to think about how Kenny would react if I decided to leave. I didn’t think I could deal with the embarrassment and shame again, not only for me, but for my kids too.

  I had grown to love Kenny’s family and once again had involved my kids in these relationships as well. I hated to put any of them in another awkward place because of my choices. None of it was their fault. Would my issues become their problem once again?

  I told myself that leaving was not an option, and maybe counseling would help. I was going to try and make the best of it. I would learn to just keep my feelings to myself and focus on all the good stuff in my life. Who had a perfect life or perfect marriage, anyway? It certainly could be worse. Kenny had some great qualities, we had a beautiful home, plenty of money, and everyone other than Dawson was happy and healthy. There were times when we got along great and seemed to be on the right track, but it felt forced, and I was walking on eggshells more often than not.

  Maybe it was all in my own head. I just needed to get my own shit together and stop being so selfish. The last thing I needed in my life was another divorce. Thank goodness I had the peacefulness of my condo in Austin whenever I needed it, and I was so grateful to have the respite and the chance to regroup. It could work, I simply needed to change my attitude. After all, my attitude was the only thing I had any control over in a life that was suddenly out of my control once again.

  I continued pouring most of my energy into researching Dawson’s still unnamed illness. I became as educated as I possibly could on various types of neuromuscular disease. He had so many symptoms, but nothing pointed to one specific disease, which made me start to doubt it was even that at all.

  He was scheduled to have a muscle biopsy in Austin, and even though it would be hard on him, I hoped at least it might give us some clarity. He had MRIs done of his brain, and nothing new had shown up since the previous one. We also did some more blood work that had not come back yet. I was hopeful that between the muscle biopsy and the blood work, maybe we would finally figure out what kind of monster we were dealing with. I needed answers to calm the chaos that was going on in my head, and I needed them fast. I could slowly feel the toll that it was taking on me. I was keeping things bottled in so tight that I was afraid I would explode like a shaken can of soda at any moment.

  I drove to Austin the day before we were to meet with the surgeon for the muscle biopsy at Dell Children’s Hospital. It would not be a long surgery, but they would have to put Dawson under because of his autism and lack of understanding of what was happening. Greg and I met with the surgeon, who was actually a friend of ours, and everything about the meeting was smooth and familiar.

  “Dr. J,” I always called him. He was soft spoken, kind, and put our minds instantly at ease. Greg and I laughed and joked around in the waiting room just like old times. One thing for sure, Greg and I have always had the same sense of humor and find comedy in the smallest things most people would never get or think is funny.

  As we waited for Dawson, I had mentioned to Greg that I wasn’t very happy at home, and I told him there must be something seriously wrong with me that I couldn’t seem to make a marriage work.

  “Don’t be so hard on yourself, you were great at our marriage. I was the one who fucked up, not you.” Hearing him say it made my heart flip. It was something I had always wanted to hear from him in person. I literally felt like my soul had suddenly been healed by that one simple statement.

  I had worked so hard through the years to get over Greg. Now, sitting in that waiting room, I was mad at myself for letting those old familiar feelings creep back into my heart. It was scary, and even though it felt good, I didn’t want those feelings back. I needed to work on my marriage to Kenny and put all craziness out of my head. The more I fought, the harder it became.

  Something had switched that day of Dawson’s surgery between Greg and me. A familiar energy had surfaced, and it made me feel alive again. Maybe all the difficulties with Dawson had made us closer as friends, and it was nothing more than that. There was no way he could be feeling the same thing I was feeling, and I decided once again to guard my heart and stop thinking about it. Nothing good would come out of it, even if he was starting to have feelings for me again. I was NOT going to commit adultery of any kind, and it already felt like cheating just thinking about it. If I’ve learned anything from the past, it’s that even thinking about cheating does not usually end well.

  We found ourselves alone in the doctors’ waiting rooms a few more times in January 2017, with the same damn familiar feelings sitting right between us. I felt so much comfort from Greg during those doctor visits, and it was eerily reminiscent of when Dawson was a baby going through the autism diagnosis. Except this time we were older, wiser and had already been to hell and back.

  There was a softness in our new relationship that had not been there for years, as if the past had been stripped clean of all its ugliness and pain. When we were together, it felt like wearing the warmest, most comfy sweater in the world, after thinking it had been lost forever. Having Greg beside me when dealing with Dawson’s illness was the kind of love and support I craved. But I knew that it was too late for us, and we had to live in the now. I needed to just be happy with the good place we were in and focus on what was happening with our son. Nothing else needed to matter.

  After another long day of doctor a
ppointments, I was cooking dinner at home in Cypress, listening to ’90s Country Music on Pandora. That station always took me back to a time when life was so magical and full of promise. It took me back to the good times with Greg—not a good idea when my marriage was on the brink. It made me happy in a nostalgic sort of way and was an escape from the present. If I could not be with him physically, I still had the memories.

  I was making tater-tot casserole and remember so clearly the text that came over my phone as I poured the hamburger meat over the tater tots. Yes, that is how clear it was.

  “I really miss you,” appeared on the screen.

  My heart actually leapt in my chest and tears welled up in my eyes. We had said stuff like this over the years, but this time it felt different. Fear, excitement, sadness, elation—all at once. This was all wrong in too many ways to count. But what I was feeling was so familiar and clear, I almost didn’t know how to deal with it. It was the same love I felt almost twenty-five years ago when I married Greg, and suddenly, there was nothing wrong about it. Except for one very important fact—we both were married to other people. My husband was about to come home from work at any minute, and my stepdaughter was upstairs, waiting to eat dinner with us.

  I decided to text back. “I miss you too, Zeke.”

  I had not called him by his nickname in years, but now it felt more natural than ever.

  “Maybe someday when we are old and gray, we will be back together,” I texted back with shaking hands. I had always thought that maybe, just maybe, Greg and I would end up together, but it would be in a retirement community when we were in our 80s. I could see the scene so clearly in my mind. We would be playing the same board games we loved to play when we were young and madly in love, sipping our Pinot Grigio with ice from our oversized wine glasses, on the front porch of our tiny patio home. It was crystal clear.