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

by Sarah Swindell

  As if all that wasn’t enough, she developed the Epstein-Barr virus, causing her to be constantly ill. She was always fighting some sort of infection. This sweet girl went through so much in that one year and did her very best to keep a smile on her face through it all. She is a true warrior in my eyes.

  I believe Brenna became seriously depressed, between the bullying, surgery, isolation at home and being constantly ill. It led her to do the only thing, in her mind, that seemed to ease the pain—physically hurting herself. She started cutting. I asked Brenna to share some of her thoughts about this time in her life so that I could put them down on paper a little better. What she wrote brought me to tears, because some of what she said were things I never knew. Her bravery in sharing this part of her life is a perfect example of the amazing, strong adult she has become. She feels the same as I do, that by sharing our experiences, we might help someone to not feel so alone, and to seek help.

  This is what Brenna shared about that dark time in her own life.

  I would say the cuts I did before the surgery were more to fit in with the people I was hanging around at the time. I did only a few tiny ones and not deep at all. After my surgery and when Robby broke up with me, it got really bad. I felt like I had lost everything and the only thing that made me feel human was hurting myself.

  I felt very alone. I wasn’t in school because of my recovery from surgery, I couldn’t go to the bathroom or shower on my own. I couldn’t cheer anymore, and the bullying was even worse from home because of texts and Facebook messages I was continuously getting.

  I also was gaining a ton of weight, and I felt like my high school time was taken from me and ruined. I think Dad was actually considering moving to Arizona or was already living there at this point too. Also after the surgery, seeing how hard it was on my mom to have to deal with me and take me to doctors all the time sucked.

  I felt like such a burden when everyone else was going through so much. I hated my life, and my mom’s was revolving around what I was able to do because she literally had to do everything for me for months.

  In the beginning, I hurt myself for attention, but it got so bad I was embarrassed to even show or talk about them because I thought people would think I was crazy. But I was in so much physical and emotional pain, burning and cutting was the only way I felt alive.

  Also, I had gotten really addicted to the pain meds I was on around my junior and senior year in high school. I was taking like three pills every 3–4 hours. It would make me so sick sometimes, but I just wanted to be numb and not care.

  Now I think about it occasionally and have attempted to a few times, but it actually made me sick to my stomach, since I’m not in the horrible emotional state anymore and I’ve learned how to handle the need to cut or burn.

  My school counselor, Mrs. Anderson, was for sure one of my lifesavers and I will never forget how she handled everything I told her. She never once judged me or got upset with or made me feel abnormal. She talked to me like I was a typical teenager, not struggling or hurting.

  There was also Sophia. Once I noticed that she was declining, I knew I needed to get my shit together. I don’t think she knows, but I wanted to be a good influence, and I knew she knew what I was doing, I’m her big sister and should’ve been a better influence for her when I realized that after I started doing lots of self-talk and self-reflection.

  I know it is hard for people to understand why someone would deliberately hurt themselves or find pleasure in cutting their own skin, leaving lifelong scars. Brenna explained to me that when she cut, she felt an almost euphoric release from her physical and emotional pain. It’s as if watching the blood trickle from her skin allowed her to let go of the pain.

  Learning that Brenna was doing this to herself because she was hurting so much broke my heart. It also terrified me, because I thought it meant she wanted to kill herself. She told me that it had nothing to do with wanting to end her life. It hurt me so much; here was yet another time when I didn’t know how to help my own child. Her school provided a wonderful counselor who helped tremendously. Thankfully, Brenna was slowly able to control the powerful urge to self-harm, but it took years.

  I asked Brenna if the divorce from her dad or my own actions contributed to her suffering, and she said it was so much more than just one thing. I still carry tremendous guilt that her life had become so difficult that she felt she had to turn to such drastic measures to feel better. I have learned over the years she was not alone, that many teenagers and adults find relief in cutting. It just was not talked about very much, likely from the shame associated with it.

  As a mom, all you want for your children is for them to be happy and healthy, to never feel lost or afraid. You want them to feel that they can come to you with anything bothering them, and you always want to know how to fix things. I had learned with Dawson that no matter how much you love your children and do everything to help them, sometimes it just isn’t enough. Now I was learning the same lesson with Brenna.

  I honestly believed the move to Houston would help us all to forget the pain that was going on in our lives, but as with so many things, it was just another Band-Aid that would eventually fall off.

  CHAPTER 22

  WE STAYED A LITTLE MORE than a year in Houston and, as usual, we packed a lot into that year, many highs along with many lows. Staying true to my love for love theme, I met Jordan just a few weeks after we moved to Houston. By this time, Greg and I were on good terms and stayed in communication about Dawson and the girls, but also stayed in touch about other things. On special occasions like our wedding anniversary, holidays and birthdays, we would exchange innocent texts with a subtle flirtatious tone, especially after a few drinks. But I was careful to guard my heart and not let it go much deeper than that. I could not go through him breaking my heart again. I stayed focused on the good things in my life, and less than six months later, Jordan and I were engaged.

  Jordan was very good to me. He had a wonderful family, great kids, and a career that provided a lavish lifestyle that I admittedly enjoyed right along with him. I had no doubt that I was in love and that we had something special in the making. I was especially fond of his son, Jake, who was the same age as the girls. He was the type of boy any mom would love to have as her own son. He was good looking, played football in high school, and was as sweet as could be; a gentle giant. Brenna and Sophia got along really well with Jake, and I loved the sneak peek at what our future family would look like.

  I was thrilled when Jordan proposed in the small, romantic restaurant where we had our first date. But just as it happened with Shane, Greg’s face flashed in my mind the moment he slipped the ring on my finger. Once again, I conveniently pushed the confusing feelings deep inside and tried to focus only on the beautiful moment happening right in front of me, as I gave an enthusiastic “Yes!” to Jordan.

  This time around I thought being a stepmother would be easier, since Jordan’s kids were the same ages as mine and would not need as much hands-on attention as younger children require. Jake lived with Jordan full-time, and his daughter, Maggie, lived with his ex-wife most of the time, so I didn’t know her quite as well. There was some trouble in the custody situation with Jordan’s children, but I stayed out of it as much as I could.

  Jordan was great with my kids, and he was very understanding and patient when it came to Dawson, which I appreciated so much. But as usual, shortly after the engagement, warning signs of impending trouble started to surface. But instead of focusing on what was going wrong in my relationship with Jordan, I started to become keenly aware of a bigger problem brewing. This time, it was Sophia’s turn to grab my attention, and boy, was that mission accomplished.

  It all began when the girls and I started watching the show Extreme Weight Loss, about how people lost dramatic amounts of weight through time, hard work and dieting. At the end of each show, they would have a big reveal to their families, showing off their new look, as everyone cheered and clapped, in awe of the
major physical transformation that had taken place. For me, it was a bonding time with the kids, eating popcorn all cozied up on the couch. I never dreamed that such a simple moment in our lives would turn into something so terrifying in the near future.

  Both of the girls had mentioned they would like to lose a few pounds, so I came up with a fun idea to help them with their goals. They would write down their target weight and put it in an envelope to keep it a secret. After a few months, the person closest to their goal would get a shopping spree to complement their new figure. My well-intentioned incentive was to place control in their own hands, instead of me being the one to point out if they were overeating or not making good food choices. I would later be told, by several therapists and counselors, that was the worst thing I could have done.

  Let me just say that Sophia won the weight loss contest, but it was also the start of an eating disorder that spiraled out of control extremely fast. She lost close to eighty pounds in only a few months, just before her sixteenth birthday, and her personality changed as fast as her body. At the same time, I was going through the process of ending my engagement to Jordan. It was not an easy task as he was not taking it well.

  The girls wanted to go back to Austin, and they decided to move in with Greg and Elaine while I took care of everything in Houston. Just before things fell apart with Jordan, I had sold my home and moved in with him. Now, I needed to navigate retrieving my furniture and personal items that I had literally just moved the month before, while keeping a safe distance from a very angry ex-fiancé. I was a huge ball of stress and was operating in survival mode. Thankfully, I had not sold my home in Austin, and the people renting it agreed to move out a little early. I was beyond grateful and wanted to get back to my kids as soon as possible.

  Once I had settled back in Austin, Sophia’s health declined fast as she continued to lose weight. She was pale and her bones showed through her skin, especially in her neck and chest. She was sneaking out of the house, and her behavior became erratic and irrational, with sudden outbursts of rage toward both Greg and me. She was no longer the sweet, goofy girl who always loved being with her family. Once again, I was overcome with the paralyzing fear that I was incapable of helping my own child with something I didn’t understand.

  We took her to a specialist dealing in eating disorders, and he told us that her life was in jeopardy from the stress her heart was under. My first thought was Karen Carpenter, one of my favorite singers from the ’70s who had died from anorexia. There was no way I would let that happen to my daughter. Greg and I were on the same page and decided she needed to go to the treatment center her doctor had recommended in San Diego. We gathered the entire family together at my home and told Sophia what we had planned for her.

  “Soph, we love you and we are all worried about you,” Greg said calmly as she sat with angry arms crossed.

  “We have no choice but to find treatment for you, honey,” I added as tears filled my eyes.

  We had decided to make a formal plan once we got back from vacation, as we were set to leave the following day. Greg did not think I should take them on vacation during such a challenging time and thought we needed to get Sophia into treatment sooner than later. We actually got into a heated argument over it, but my stubbornness won. I thought it was a good idea to take my girls on a nice vacation to Colorado, with the hope that it might be a game-changer for Sophia to have quality family time, away from Austin. I could not have been more wrong.

  She was not happy about the treatment center plans, and she let us know about it as she stormed upstairs, where she disappeared for the rest of the evening. I thought it would be best at the time to leave her alone and give her space to avoid making an already tense situation worse. That was also a big mistake.

  The next morning, we got up early and headed to the airport, excited to see my family that was coming in from Houston to meet us in Telluride. Sophia was hardly saying a word to any of us, and I just figured she was still angry about the night before. I let her be and concentrated on trying to have a good time with Hayley and Brenna, who were acting silly and goofing around as usual. As we changed planes in Denver, I could see that Sophia was very groggy and not acting right at all. As we ate lunch at an airport restaurant, she actually laid her head on the table as we ate. She, of course, ate nothing. It was more than just a bad attitude, but she insisted nothing was wrong and that she was just tired. Even though I was extremely annoyed with her, I didn’t press for more.

  When we finally got to the hotel, she had perked up a bit and was happy to see all of her cousins sitting on the hotel patio, enjoying the crisp cool weather around the fire pit. Just as I had ordered my first much-needed glass of wine, Sophia came over to where I was sitting around the fire.

  “Mom, I don’t feel very well, something is wrong and I need to go to the room.” Her eyes were almost pleading with me, and she looked frightened.

  “Okay, sweetie, I’ll come up with you,” I said, sensing that she did not want to be alone and sort of felt good that she even wanted me around her. The moment we got to the room, the seizures started. I called 911, trying my best to stay calm; but while I was calm on the outside, on the inside I was feeling pure terror.

  Watching her have seizure after seizure in the ambulance is a scene no parent should ever have to endure. Her neck would suddenly curl painfully back, and she would be unable to speak for what seemed like minutes. Then her body would relax only for a minute or so until the whole episode started again. I have never seen anything like it, and never want to again.

  Sophia kept insisting through her tears and during the moments that she was even able to speak, that she didn’t know why she was having these episodes. I was frantic, trying to understand why this horrible thing was happening to her body seemingly out of no where.

  “You have to be honest with us, Sophia,” the ER doctor asked with urgency. “We can’t help you if you don’t tell us what happened. Your life is at stake.”

  Sophia’s eyes were filled with terror with each episode, but it still took an hour for her to finally confess to us she had, in fact, taken the pills.

  The night before we left for our trip, after we told Sophia about the treatment center, she took a whole bottle of prescription medication. She attempted to take her own life. It was her way of showing us just how much she did not want to go to a treatment center, and her point was made frighteningly clear.

  We found out the type of medication after I called a friend in Austin and asked her to go over to my house to look for an empty pill bottle, which she found in Sophia’s bathroom. The doctor knew exactly how to counteract the effects of the drug, and the seizures slowly subsided. He explained that this type of overdose does not always have an immediate effect, and it can take twenty-four hours for the body to react. It had been exactly twenty-four hours after she took the pills. The doctor was right.

  It was a terrifying journey for me as a mother, and I have never been so afraid and unsure about what to do as I was then. But what I was feeling could not compare to what Sophia must have been going through as a young girl so lost in an eating disorder that had taken over her mind and body.

  I was finally able to catch my breath, hearing she would be fine after the medication wore off. Then, just a moment later, I completely came apart at the seams from the hours of stress and not knowing what was happening to my little girl. I was in shock; it hit me at that moment. My daughter wanted to take her own life, and almost succeeded.

  After a few days of recovery in Telluride, it was time to head to San Diego without even going home to get her things. It was bigger than just an eating disorder now. We needed to save our daughter’s life, and we were doing it blindly, with no script to follow. We hardly knew anything about the treatment center other than photos from the website and reviews ranging from horrible to how the place saved their child’s life. Greg was set to meet us at the airport in San Diego, and we would drive her to her temporary home together as a family. />
  We drove the rental car along the beautifully landscaped road to a one-story home that sat at the top of a hill. It looked like the home of a perfect family, living the good life in California, but it was far from that. It was a one-story mid-century modern brick home that looked as if it belonged in the ’70s era. It looked nothing like the treatment center I had imagined. It was a beautiful, sunny California day, but for me, it was one of the darkest days I had experienced since Dawson’s diagnosis.

  Greg pulled into the circular drive as I sat beside him, paralyzed with fear. Sophia and Brenna sat quietly in the back. Greg and I had been divorced for three years at this point, but that day we were just a family in pain, and nothing from the past mattered. After we had all stopped crying, we silently got out of the car and unloaded Sophia’s things from the trunk.

  We walked slowly up the steps to the large, brown double doors and rang the bell. It all felt unreal. I can still see those double doors and smell the interior of that house as if it were yesterday. It had shag carpet and a sunken living room with a huge stone fireplace in the middle. There was a large coffee table with an unfinished puzzle that a few sad-looking girls were working on, hardly looking up when we walked in. Even the therapy dog looked sad, but he came up to Sophia, nudging her hand to pet him, knowing it was time for him to go to work comforting the new girl. The place smelled of sadness and despair. I had the immediate urge to grab Sophia, run out the door and never look back. The feeling was almost identical to the one I had when Dawson was diagnosed with autism. The feeling of wanting to simply vanish with your child to a safe place and pretend it was all horrible dream.