If there is one thing Corey and I have always agreed on it’s that our daughters, Aliannah Hope and Aleeah Grace, are the world to us. I still remember being in the hospital on the day I went into labor and deciding at the last minute to change Ali’s middle name. We had planned to name her Gene, after my grandmother, but now that she was about to come into the world something about it just didn’t feel right to me. During those months that I was stuck at home on bed rest, I had done a lot of research on baby names and Hope and Grace always stood out to me. I was drawn to the simple beauty of the message in their meanings—as if some part of me instinctively knew that I needed to gift my daughters with these names so Ali would always have hope in the face of the challenges she would face, and Aleeah would have the grace to live with gratitude for the strength in her body.
Top: Aleeah Grace. Bottom: Aliannah Hope.
I think I knew the moment Ali was born that there was more going on than what the doctors were telling us. Just after the girls were delivered, I remember hearing Corey asking over and over, “What’s wrong with her? What’s wrong with her?” I had just had a C-section and I was lying in a hospital bed in this huge operating room. I could hear both babies crying, so I knew at least their lungs were strong. Then Corey came over to me and said, “There something wrong with her legs.” I couldn’t really sit up or even move much because I was still hooked up to IVs and monitors, so I stretched my neck to look over at where the nurse was swaddling the girls up to try and see what Ali’s legs looked like. Even though the nurse kept telling him she was fine, Corey was freaking out, so she brought Ali over to me so I could see for myself. She unwrapped the blanket, and that’s when I saw that her legs were stuck up over her head and her hands were hyperextended back towards her elbows. They had swaddled her twisted up like that because they didn’t want to force her limbs down before they were ready. The photos we took of her in the hospital are hard for me to look at even now.
Then they took them straight to the NICU and I wasn’t allowed to see them until the next morning at 6:00 a.m. I never even got to hold them. It was the worst feeling in the world to be separated from my babies like that. I couldn’t even take them home with me when I got discharged because they weren’t strong enough to leave the NICU yet. I remember leaving the hospital and feeling like a part of me was missing.
When we asked why Ali’s legs and hands were like that, the nurses and doctors at the hospital assured us this was fairly common among breech babies and that it was likely because of the way she was positioned as the bottom baby in the womb. They worked with Ali a little bit in the NICU to try and coax her legs and hands back into the right position. Then when we finally got to take the girls home the hospital hooked us up with Birth to Three. This is an amazing early intervention program, especially for low-income families, because not only do they provide speech, occupational, and physical therapists to work with your child, they help parents navigate the healthcare system. In a lot of cases, mine included, they also offer the kind of emotional support you can’t get from your own families.
Above: Aleeah in the NICU.
Below: Ali in the NICU (they used a rolled-up baby blanket to help coax her legs back down).
As babies, Aleeah was reaching developmental milestones (picking her head up, rolling over, sitting up, and crawling) right on time, but Ali just didn’t seem to have the strength. At eight months old, she still had to be in this little baby chair to sit up because she couldn’t do it on her own. I knew that just because they were twins, I shouldn’t expect them to be developing at the same pace, but as they got older Ali just kept falling further and further behind. By the time they reached their first birthday, Aleeah was walking and zooming all over the house, but Ali still couldn’t bear any weight on her legs. Everyone around me was rationalizing that it was because she had more weight on her than her sister (which we now know is because it’s harder for her body to burn fat because her muscles are so weak), but deep down I knew something bigger was going on.
For the first three years of Ali’s life, I felt like I was holding my breath. We took her to children’s hospitals as close as Charleston, West Virginia, and as far as Lexington, Kentucky, where she was tested for everything from a spinal injury to skeletal and neuromuscular disorders. We met with so many different specialists it made our heads spin—geneticists, neurologists, orthopedists, and neuromuscular specialists. They took X-rays of her legs, did blood work and genetic testing, and put her through multiple MRIs—and because she was so little she had to be sedated, which was traumatic for all of us. My maternal instinct was screaming that there was more going on with her than just a developmental delay, but none of the doctors we took her to seemed to be able to tell me why she wasn’t reaching those early milestones.
When she was around six months old, we took her an orthopedic specialist at a hospital in Morgantown who scared the living shit out of me. I’ll never forget the way he poked and prodded her hands and legs like he didn’t see Ali as a child but as a specimen in a lab. He clearly had no idea what was wrong with her but instead of admitting that, he started rattling off all these conditions—dwarfism, Down syndrome, spina bifida—that he thought she might have without even doing any actual testing. His manner was so cold and clinical that I just burst into tears right in his office. Corey’s stepmom was there and she cried right along with me. I just kept thinking, what kind of doctor says those things to a family without doing any kind of testing? To add insult to injury, on the three-hour drive back home, I was going through all the paperwork they give you after these appointments, and I saw he had written in his notes that Ali had a lot of “fat rolls” on her arms and legs and that she looked like the “Michelin Man.”
Despite how overwhelming and frustrating it was to go through all those tests and still not have any answers, I couldn’t shake the feeling in my gut that if we could just figure out what was holding Ali back we could get her the help she needed to thrive just like her sister. But it seemed like the more I pushed to have her tested the more everyone around me (including Corey) insisted that I shouldn’t be putting her through it. The only person who seemed to understand why I was so determined to find the cause was Ali’s physical therapist in the Birth to Three program. Kim gave me hope when I was feeling hopeless. Even though she had never seen a case like Ali’s before, she was on top of it. Unlike everyone else around me, she didn’t try to explain it away or dismiss my concerns. She held my hand throughout the whole process and was supportive of my need to figure out what was wrong. She knew the system and would help me find doctors and schedule appointments because I had absolutely no idea where to begin. Ali is still working with Kim to this day, and I’ll forever be grateful for all her help over the years.
On my quest to find a diagnosis for Ali, I had to walk a long and lonely road. By the time the girls were about to turn three, I almost gave up. We were still having doctors monitor her progress, but it had been a while since we had done any testing. Then our family doctor recommended a neurologist in Huntington, West Virginia, and I decided I would give it one last try. If she couldn’t tell us anything, then I would do what our families had been insisting I should all along and leave it alone for a while. Maybe it was because she was a female doctor, or maybe it was just the right damn time, but this appointment changed everything. She was the first one to say to me what none of the doctors we’d seen before had been willing to say: She had never seen anything like this before and she was stumped. She then recommended that we take Ali to Nationwide Children’s Hospital in Columbus, Ohio, which is one of the largest and best pediatric hospitals in the country.
This meant putting her through more blood work and another MRI, on top of a muscle biopsy (where they took a muscle sample from her thigh and sent it off to a big lab in Boston for testing). It was painful, having to put her through all that, especially now that she was older and starting to become aware that she was different from other children—but for the first time in three years (which felt like twenty) I felt like we were finally moving in the right direction. Immediately after the biopsy, Dr. Tsao, who is one of the best pediatric neurologists in the country, came out to tell us that just based on the color of her muscle (which was light pink, rather than the bright red of healthy muscle tissue) he was confident it was a neuromuscular disease. Then the biopsy confirmed that she had Titin Myopathy, a rare form of congenital muscular dystrophy caused by a mutation in the Titin gene.
At the time, there were only a handful of adults around the world with the same type of muscular dystrophy, and Ali was the first child ever to be diagnosed. With adults, they know that Titin MD can lead to heart and lung failure, but for Ali, we have no idea what to expect as she gets older because she is the research. The process to get to this diagnosis was unbearable. Then, when we finally had it, I was just so angry, because it turned out there was no cure at the end of the rainbow, just more tests and more monitoring. It took me a while, but eventually, I let go of the anger because I realized that knowing what Ali has is our best defense against this awful disease. It also means that she has access to the resources she needs and to the best doctors. We live in hope that the research and discoveries that they are making now, especially with treatments like gene replacement therapy, might one day lead to a cure.
Today, Corey and I are on the same page when it comes to Ali’s medical treatment. But for a long time, I felt like his attitude was that she was fine and I was putting her through all that testing because I was looking for something that wasn’t there. Looking back, I can see that he was afraid for Ali; it was easier for him to live in denial because facing the reality that our daughter might have a potentially life-threatening condition was terrifying. I think the turning point for him came after the diagnosis when Ali finally got her motorized wheelchair and he saw how freeing it was for her to be able to keep up with other children. But it took years for him to get to that place, and until that moment I felt like I was out there fighting for Ali on my own. I wanted Corey to be on my team, but he wasn’t, and that became a wedge that pushed us further and further apart.
On top of everything we were going through with Ali, at eighteen years old I was still looking to fill a void and I brought my “daddy issues” into our relationship. I wanted to love Corey the way that he loved me, but I wasn’t capable at that point in my life because I didn’t love myself. I wasn’t happy with my life and I wasn’t happy with the choices I had made. I was lost and I didn’t know how to find a path to happiness. I was always chasing after something to make me feel good about myself, and Robbie was like a quick fix whenever I was feeling low. I would get together with him, but of course, it didn’t feel right, and then I’d had to live with the guilt and the shame. It was this awful cycle that I was stuck in, and I just kept repeating the same mistakes over and over again. Until finally, I hit rock bottom and got the help I needed to find the love and happiness I had been searching for within myself.
I take full responsibility for the mistakes I made that pushed Corey and me apart, but what people saw on the show was a version of events that was more fiction than reality. To this day I don’t believe my cheating with Robbie was the reason our marriage fell apart. About a week before our wedding, I had a bunch of girlfriends over at my mom’s, for my bachelorette party. We had all been drinking, and a couple of my friends started texting with Robbie off-camera. Later that night, he ended up stopping by with a few of his buddies. We played beer pong, and by the end of the night, we were all pretty drunk. Robbie hung around after everyone else went home, and I remember him asking me if marrying Corey was what I really wanted. In that moment I realized that I wasn’t sure what I wanted, except to find a way back to that feeling I had when we were fifteen and my life wasn’t so complicated. I’m sure he said all the things I needed to hear, and we ended up having sex.
I regretted it instantly. I knew I had made a huge mistake. I didn’t want to tell Corey what I had done because I was afraid of losing him and destroying my chance at having the family that I wanted to give our daughters, but in the end, I couldn’t live with the guilt. After everything we had been through, I didn’t want our marriage to start out with a lie, so a couple of weeks after the wedding I told him what had happened on the night of my bachelorette party. He was hurt and angry, but at the same time, he also understood why it had happened because he had been struggling with the same doubts. Ever since our episode of 16 and Pregnant had aired, he had been approached by women online and in our hometown. Even though he hadn’t actually cheated like I had, he had been out there flirting and enjoying all the attention. We talked and cried for hours. It was one of those relationship-defining conversations where you both admit to the doubts you’ve had and the mistakes you’ve made and then come to the realization that what really matters is what happens next. Between becoming parents at such a young age and the weird celebrity status that being on the show had brought into our lives, we agreed that we had both been in a confusing place and decided to try and put all of it behind us and move forward with our lives together.
For the next six months, we were in a really good place. We had been living in this crappy, rundown trailer next to his mom’s house, and the plan was to use some of the money coming in from MTV to move into a better place. I thought we were on the same page, but then he decided that he wanted to wait to move because he wanted to buy a new truck. We argued about it for weeks and I ended up getting so fed up with our living situation that I took the girls and went to stay with my mom. Neither one of us wanted to back down or compromise. I think the whole thing kicked up a lot of issues that had been festering under the surface because what started out as a stubborn argument ended up escalating to the point where we were barely speaking. When my mom told me that Lee had found us a place we could afford, I told Corey I really wanted to take it because I didn’t think I could go back to bathing our girls in our mildewy, spider-infested basement. He agreed that we should take it, but then he said he wasn’t sure if he was coming with us.
Meanwhile, we were in the middle of filming the second season of Teen Mom 2. The film crew was wondering what the hell was going on with us, and once the producers got involved it added more fuel to the fire. I don’t know if they reached out to Corey because they wanted to know why we were arguing, or if he contacted them first, but I got a call from one of the producers who said she had talked to Corey and he had told her that we were splitting up because I cheated on him. I was taken aback that this was coming up now, even though we had agreed six months earlier to put it behind us, but she said it was still an important part of our story and Corey had already agreed to film about it. By that point, we were barely speaking, but Corey sent me a text that made me think that if I agreed to talk about what happened on camera he’d be willing to work things out.
What bothers me about how it all played out isn’t that I got called out on the show for cheating on Corey, it’s that I felt like I had been manipulated into a situation where it looked like I had been lying to him about it and that’s why our marriage fell apart. I don’t know what was going through Corey’s head, or why he felt like he needed me to confess on national television. I think it was partly because he knew he was going to look bad for wanting to buy a truck over a decent place for us to live, and partly because he was still angry about what had happened on the night of my bachelorette party. I still believe that we might have been able to work through our problems, but once he put it out there that I had cheated he started getting pressure from everyone around him. We had parents involved, we had producers involved, we had an entire show involved, and the next thing I knew he hired an attorney and we were filing for a divorce.
It happened so quickly I don’t think either one of us fully understood what we were doing until the day of our court date, and by then it was too late to turn back. We rushed into marriage because we wanted to give our girls a family, and then we rushed into a divorce because we were still so young, we didn’t know how to communicate. We never gave ourselves a chance to figure out how to work together as a married couple, so we ended up having to learn to navigate everything coming at us as divorced single parents.
The next couple of years were really hard on both of us. I’m not sure anyone who hasn’t been through what we went through can understand how truly terrifying it is to know that something isn’t right with your child, but not be able to find anyone who can tell you what’s causing it or how to fix it. Every time we had to have Ali tested, it was like having our hearts ripped out of our bodies, especially when she had to be sedated for the MRIs and the muscle biopsy. In those first few years of her life, I just remember feeling helpless all the time. What we didn’t realize until much later was the effect all this was having on Aleeah—who is the only one of the girls we also call by her middle name, Grace. She was such a happy baby and she was reaching all her milestones, so my focus was always on Ali. I didn’t get to fully enjoy Aleeah as a baby, because every time she did something like roll over for the first time or take her first steps my first thought would be, Why isn’t Ali doing these things?
As Aleeah got older she started acting out. She would throw fits, she was hitting, and she would be mean to Ali. This went on for a couple of years until we finally realized that her behavior was stemming from the fact that she needed more of our attention. When they started school, they were automatically put in the same class, and it was a lot of pressure on Gracie because she felt like she had to help Ali all the time. One day she came home from school and I could tell she had been crying. When I asked her about it, she told me that some kids in her class had been making fun of the way Ali walked. She was upset and embarrassed, so she just hid in the bathroom and cried. That’s when we realized we had to separate them in school so that Aleeah would have the space to be her own person. I also started taking her out and doing things with her one-on-one so she could have my undivided attention. And whenever we had to drive Ali to see a specialist in Ohio, Corey would take Aleeah and do something special with her.
Even though Corey and I knew intellectually that it was hard on Aleeah, and started working together to find ways to give her more of our time and attention, the emotional impact it was having on her really hit home when the girls were around seven or eight years old. We were filming for the show and out of the blue Aleeah asked me, “Is it my fault?” For years she had been hearing us talk about how the doctors thought the problem with Ali’s legs was because of the way she was positioned in the womb. When I was pregnant with the girls, Aleeah was way more active than Ali. I could feel her moving around all the time, taking up a lot of space in the womb, whereas Ali stayed mostly in one position. In her child’s mind, when she heard me talking about how they were in the womb, she had interpreted that because she had been the top baby, she had squished her sister and made it so she couldn’t walk. It broke my heart that she had been carrying around that guilt all her life.
She’s doing a lot better now, but it’s still a daily struggle for both of them. I worry all the time that they’re not as close as other twins because of everything they have to go through. Ali will see her sister running and doing all the things I have to hold her back from (for her own safety), which is so hard on her. At the same time, Aleeah sees me spending all this time with Ali, taking her to physical therapy and driving to all her doctors’ appointments, which can leave her feeling left out and neglected. All we can do is try and find a balance for both of them where they know they are loved. With a little hope and grace, they will continue to grow and blossom into the beautiful young women they are meant to be.