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

by Sarah Swindell

  I always knew that Greg still cared about me, but this was the first time he actually said it to me in person, face to face, not in a late-night text or an obligatory birthday message. He said it to me sitting right beside him, and it felt so good to hear it almost scared me. My heart melted.

  “I feel like Elaine has been taking money from me. She makes up crazy stories about the missing funds when I bring it up,” he continued as he looked up at me. “Lots of weird money things that just don’t make sense.”

  I felt like he wanted to tell me more, but I didn’t press it.

  “She is so great with Dawson, I . . .” Right then, he cut himself off from saying anything more. He looked defeated, like the effort required to just say the sentence had exhausted him. We decided it was probably time to get the check and call it a night after a long but wonderful day. We left our suddenly serious conversation at the table.

  It was so strange: The man I had lived with, cared for, had children with, loved for so long, was going to his own room, especially after all that had happened that week.

  “Do you want to come have one more drink in my room?” I could not believe that sentence had actually come out of my mouth, and by the look on Greg’s face, he was a little taken aback as well.

  “I think I will just head on back to my room, but thanks,” he quickly said, as my face flushed with embarrassment.

  “I am so sorry, I didn’t mean it in that way. Too much wine, and that probably came out wrong,” I lied. I wanted him to come back to my room because I didn’t want to say goodbye. Sex wasn’t my motivating factor, and to this day, Greg doesn’t believe me when I say that it wasn’t. In my mind, I already knew how good our sex life was; it was more about just being with him. I missed just being with him more than anything else. I felt like I could completely be myself with Greg. I missed being his teammate, and now we were going to miss being grandparents together. We were going to share that role with our new spouses, and it all felt very strange.

  We gave each other a hug that lingered a bit too long as the elevator doors closed, and we said goodnight. We went our separate ways to our separate rooms and back to our separate lives. I was already dreading going back home, and I could feel that maybe he was thinking the same thing.

  It was time to get back to reality. I decided that night in my hotel room that I would forget about our dinner and focus on the joy of being a new grandmother. I also decided that I was going to work harder at my marriage. Maybe I just needed to change my way of thinking and not be afraid to speak up, even if it meant a fight. I knew that continuing to hold my feelings in was not doing anyone any good. I wondered if Kenny even felt anything was wrong? I knew he had fought constantly with his second wife. Was this normal for him? I glanced at the hotel room clock, and seeing it was 2:30 a.m. reminded me that I had a long day of travel only a few hours away.

  I popped a Unisom to turn my brain off and fell asleep thinking about Brenna and Robby with their new precious baby. I thought about my daughter who was now a mother and how incredibly proud I was. I thought about how much I hated leaving her, knowing all the emotions that come with being a new mommy. Then I thought about Dawson, and how much I wanted to see him after being gone so long. I missed him desperately and longed for one of his special sniffs, the one he does when he’s missed you. It’s his way of giving a big hug. It was time to go home.

  Dawson had not been himself lately, and I was starting to worry.

  CHAPTER 26

  SHORTLY BEFORE THE TRIP TO Savannah, we started to notice that Dawson was losing weight. He had been on the “fluffy” side for years, so at first we thought it was a good thing that he had started to thin out. He was getting taller as well, so we thought maybe that was the reason he looked thinner. But we also noticed that his ankles were starting to turn in, and he seemed to be losing the little muscle tone he had. But what started to really worry me was how his energy level had decreased.

  Dawson had always enjoyed taking long walks around the neighborhood, but those walks were progressively getting shorter and shorter. After three or four minutes, he would turn around, take my hand and lead me back home. Then he would lay on the couch, exhausted from the short walk. He was also biting himself on his hands and pinching his body, leaving tiny bruises up and down his legs. To me, it seemed as if he was in and out of pain, but I couldn’t pinpoint where the pain was coming from. The main challenge of having a child who is nonverbal is trying to figure out where the pain is coming from or why he is upset: a constant guessing game that rarely has a clear answer.

  We had always assumed his pain was from the bowel disease and his need to poop. Poop is another thing that has always been front and center in our world. When he poops he is happy, when he doesn’t he is not. His poop schedule was our barometer when it came to his happiness. He had started taking Humira injections, and it seemed to help with inflammation. Now he was in a different kind of distress, and it was my mission to find out why.

  One day Dawson was lying on his tummy at his favorite spot in the house on the entryway rug. It was just inside the front door, and he loved looking at the tiny rainbows that would form on the floor from the sunlight shining through the cut-glass door. He was starting to get “twisty,” which is something he does when he isn’t feeling well or is in pain. He can twist and contort his body in ways that are cringeworthy because he is so flexible, or if you are familiar with medical terms, hypotonic.

  He will sometimes make loud groaning noises as he is twisting. This is a cross between a cry and a roar and usually without any tears. When he is twisty, there is not much you can do for him and it will usually pass within a few minutes, sort of like a bad stomach cramp would. He does not want you to comfort him or hug him, which is difficult as a mom and goes against all motherly instincts.

  I walked over to him to rub his back in an attempt to calm him and noticed that his right shoulder blade was sticking up higher than the left as he was lying facedown on the floor. At first, I thought he might be doing it on purpose as he sometimes does when he gets mad. It’s as if he is purposely trying to pop them in and out of the socket. But when he calmed down it still was sticking out. I hadn’t noticed it before, and I notice everything when it comes to Dawson and his body. I think all moms are mini doctors and know their children better than anyone, noticing even the tiniest changes physically and emotionally. Even with my girls, I can figure out what is wrong with them usually before we even get to the doctor, or tell something is wrong simply by the slightest change in their voices. “Mommy powers,” as they would call it.

  When Dawson stood up, I took his shirt off and gave him a once-over. Even standing up, his shoulder blade continued to stick out, and I also noticed his lower stomach area looked like it was caving in a little on one side. It looked like it might be scoliosis, but I knew how rare that was in boys, especially showing up at such a late age.

  Dr. Google went straight to work, and after about thirty minutes my heart started pounding with fear. Scoliosis alone isn’t really that big of a deal, but when it’s combined with other symptoms, like the ones Dawson was having, it is a whole different ballgame. Everything I found kept taking me to pages that had to do with neuromuscular disease. The same feeling of panic I had when I googled autism so many years ago started to set in.

  I called Greg immediately and asked him if they had noticed anything with Dawson’s back. I knew he thought I was just overreacting and over-googling. In his usual calm demeanor, he told me to stop worrying, that it was probably nothing. Naturally, I didn’t listen and that Monday I called the physical medicine doctor Dawson had seen for his weak ankles, and we set up an appointment for an x-ray of his back.

  The x-ray confirmed that it was, in fact, scoliosis. He already had a 38-degree curve, and it was too late for any kind of bracing. Our next step was to see his neurologist for a full evaluation to see if it would get worse and to find out what was causing this sudden curvature in his spine. In my gut, I already knew.
So many signs of neuromuscular disease were there: the weakness, fatigue, muscle wasting, and now scoliosis. How could this be happening to this child who was already battling so much? There was no way God would allow this to happen to an innocent boy who had already been given more than his fair share of obstacles to overcome. I wanted to be wrong—please let it be something that at least had a cure or some sort of action plan we could follow. There was no way he could have two medically incurable problems. That would be way too cruel!

  I went to the neurologist by myself with Dawson. Greg still didn’t believe it was anything to be too concerned about and reassured me that it was probably nothing. I admit, I sometimes fall into the hypochondriac category, but the problem is, I’m usually right. While I would sometimes diagnose myself with some kind of terminal brain tumor after a bad headache, when it came to my kids, I was usually spot-on.

  After an hour with the neurologist, he agreed that something was wrong. The sudden curvature of Dawson’s spine was very suspicious and consistent with neuromuscular disease. He ordered lab work for genetic testing, and we would need to see a slew of more doctors while we waited for results. Now I was officially terrified. I had no idea there were so many different types of the disease, along with several other diseases that present similarly. Another search for the needle in a haystack. Sadly, I knew this process all too well.

  But this time I was wiser and more experienced. I knew that I needed to educate myself as much as possible in order to ask each doctor the proper questions. I had learned over the years that you have one shot to ask questions when you’re face to face with a specialist. Otherwise, you play an endless and frustrating game of phone tag with nurses instead of the doctor. I made appointments with all of Dawson’s doctors in Austin first, since they had most of his records. I was so grateful to have my little condo so I didn’t have to drive back and forth. At first, Kenny was very supportive and loving during this difficult time. I was visibly upset a lot. I was so wrapped up in Dawson that I didn’t even think about anything else, and Kenny did his very best to show he cared.

  I dove into my research, learning the terminology relating to different things it could be and the causes. I eliminated certain diseases first, then focused my energies on narrowing down the ones I felt could be possible so that I could ask questions about those and not waste my precious office time. I was constantly on my computer at home, and I am sure I was not the same smiling, attentive new wife and stepmother I had previously been. The only thing I cared about was what was happening to my son. I felt completely alone in my pain and overwhelmed with pressure to act normal for everyone else.

  I could tell Kenny was losing interest in hearing about it, especially as it dragged on. As I spoke, I could see his eyes drift off, replaced with a look of boredom. Looking back, I’m not sure that I blame him. Dawson wasn’t his own flesh and blood. I cared deeply about his children, they were great kids, but didn’t feel the same love I feel for my own children, the love that I would hurl myself in front of a bus for. I constantly struggled with these feelings, and I really felt like something was wrong with me. Do all blended families have the same problem, or was it just me? I felt too guilty about these feelings to share them with anyone.

  Balancing being a stepmother to Kenny’s kids and a mother to my own was difficult, especially when I was so consumed with Dawson. Maybe it was my own fault for putting so much pressure on myself to be there for everyone, treat everyone with equal amounts of love, all while pretending it was a piece of cake. I think it’s harder to establish a bond once a child is set in their ways as a teenager. They are used to the way of life they enjoyed before the stepparent ever came along. The same goes for expecting stepchildren to be thrilled and accepting of a new stepparent. There is nothing easy or natural about any of that.

  Stepparenting is not as easy as the Brady Bunch made it look, and I really admire families who succeed. I can’t even imagine how difficult it would have been if I had stepchildren who hated me. Mine could not have been any better, yet it still was a difficult adjustment to navigate through.

  I think when stepparents are introduced when the kids are younger, the bond is easier to form, easier than in the teenage years. I experienced that firsthand with Greg and Hayley. If it’s ever mentioned that Hayley is not Greg’s daughter, he becomes very upset and rightfully so, as Greg raised her. Never once in our marriage, or even after our divorce, did he ever act like she wasn’t his child. Greg’s own family treats Hayley like a full-blooded Swindell. Greg happily went to every daddy/daughter event, school activity, and endless dance recitals. He tucked her in at night, read her bedtime stories, bought her her first car, paid for four years of college and a big wedding, because Hayley is Greg’s daughter, and because that is what daddies do. She has been in his life since she was three years old, and that bond was easily formed. Truthfully, it was not always roses between Greg and our girls, especially during the divorce; but his love for all his girls, biological or not, was always there, even if he sometimes had trouble expressing it.

  During my marriage to Kenny, I found myself closing down more and more. I was stuffing all the sadness and fear I was feeling because I didn’t want to burden anyone with it. I cried a lot when I was alone, in the car, in the shower. Sometimes I would cry just watching Dawson struggle with the smallest things. He had stopped swimming and jumping on the trampoline, he preferred sitting for most of the day. He was getting thinner and thinner, and he looked so tired with dark circles under his eyes. Even running errands with him became a challenge because he would become exhausted after an hour and would want to just sit down. I even ordered a wheelchair for him. I was convinced he would be wheelchair-bound in a short time, but from what, I still had no idea.

  Our next appointment was with a specialist in Austin who specialized in neuromuscular disorders, and this time Greg joined us. I had taken Dawson to see an orthopedist for his spine a few weeks earlier, and he felt the curvature was, in fact, due to a yet-unknown neuromuscular disease. He cautioned me that sometimes a true diagnosis never occurs, due to limitations in genetic testing. The orthopedist wanted to wait and see if the curve got worse before we talked surgery and wanted another specialist to take a look at him before making any more decisions.

  I arrived at the neuromuscular doctor’s office before Greg and was a nervous wreck. I sat there, chewing on my nails in the small, sparsely furnished waiting room. It brought back all the memories of fifteen years ago, along with all the familiar feelings of uncertainty and undeniable fear. What were we going to hear, or not hear, from the doctor? As soon as Greg walked in, I was able to breathe again. Just having him in the same room made me feel stronger. Even though we were not married anymore, we were in it together. I stood up and walked over to give him the hug I so desperately needed. This was our baby—everything in our past melted away as we sat side by side in the cold, impersonal waiting room.

  When we were called back to the exam room, my heart was pounding through my chest, even though I had done the same thing countless times before. Even Greg had a concerned look on his face. It was rare that he got worked up or showed concern, and he was far from an over-reactor.

  Dawson chose to sit on the floor as usual. He exchanged the ribbon he carried for a purple rubber glove he immediately noticed in a box on the counter, motioning to us that he wanted it. Just then, two doctors walked in the room. They were all business, and very little small talk was exchanged. One was a medical student, and he was the one who started the initial questions with his clipboard in hand.

  They asked Dawson to stand up from the floor. In doing my research, I knew what they were looking for. It’s called the Gowers’ sign and indicates weakness of the proximal muscles, usually in the lower limbs. This is exhibited by pushing on the legs when rising. I already knew Dawson was doing that.

  “I do see that he is positive for Gowers’, but it’s not too bad at this point,” the doctor said. Naturally, all I heard was “at this point,�
�� and my brain immediately went to Defcon 5.

  The main doctor examined him from head to toe for about forty-five minutes while continually asking questions. When he was done, he pulled up his little chair on wheels and began to speak.

  Once again, my ears began to ring, just like during Dawson’s autism diagnosis. I had a hard time understanding what the doctor was saying as I battled holding back my tears. He was certain Dawson had something more than just autism. His words confirmed that we were dealing with something more serious. He ordered more tests and more specialists. Just like in 2001, it was happening to us all over again. Our sweet boy was blindsided by another undeserving blow, and it hit me just as hard as it did the first time.

  I was an emotional mess by the time we made it to the elevator. When the three of us got to the parking lot I fell into Greg’s arms, and he held me as I cried uncontrollably for what seemed like forever. I never wanted him to let me go, and all I knew was that I did not want to drive back to Cypress; back to the home where I was so unhappy and felt that no one understood my pain. Only Greg truly understood me. As we both held each other, both of us felt the same heartbreak, sadness and uncertainty for all that was ahead. The only thing I wanted to do was to stay right there with him and cry for our son who had just been handed another life sentence.

  CHAPTER 27

  A COUPLE OF MONTHS WENT BY and Dawson’s spine continued to get worse. This meant that whatever was wrong was, in fact, progressive, and surgery would most definitely be in his near future. He was at about a 50 percent curvature, and we were getting conflicting opinions from his various doctors about when he should have the surgery. One doctor thought we should wait a little longer, while the other thought we should have done it long ago.

  The surgery was not going to be easy for him by any stretch. The fact that he was so severely autistic with an unknown neuromuscular disease made it even riskier, which only left me feeling more scared and confused about what to do. Trying to get several doctors on the same page was an almost impossible task, especially when we didn’t really know just exactly what we were dealing with.