Tia Singer Willin is a mom of three sons and a daughter who lives in Cape Coral, FL, where she runs her own writing business, THOH Creations. She also blogs at Resurrecting Me. She shared her story exclusively with FirstforWomen.com.
When I was 5, a gang of teenage boys attacked and sexually molested me. When I tried to tell my dad, I couldn't explain what had happened, so I settled on "Some boys were mean to me." My dad sighed. "Stay away from the boys and they won't be mean to you," he advised.
Unfortunately, those boys wouldn't stay away. I came to believe that God hadn't saved me from them because I wasn't worth saving. By the time I was in high school, I thought I was unworthy and impure. I was an incorrigible runaway, staying in abandoned buildings, cars, alleys, and stairwells. Anywhere was better than home at the time.
Maybe that's why I got pregnant at 17 and dropped out of high school. When I was 6 months along, my parents said they were moving from Minnesota to Florida. I could come with them if I wanted. I said no at first, but then I worried that if I delivered my son and didn't have a permanent address, social services might remove him. So I agreed to go but planned to return soon after the baby was born.
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The moment I saw my son Joel, my entire outlook changed. I knew I couldn't bring him onto the streets. So I got my GED and went to college. To make ends meet, I babysat and cleaned condos.
But a car accident changed all that. I broke my back and my pelvis. Joel suffered a brain injury. It was devastating. Thankfully, my parents stepped in; otherwise, I don't know what I would have done.
While I was recovering, a family moved into the house behind me. I was hobbling around with a cane, so once a day I began making the trek across our backyards to have coffee with my neighbor. She kept telling me I needed to meet her younger brother, Ryan.
One day Ryan got off of work early and stopped by his sister's house while I was there. The first thing I noticed about him was his smile. We talked for over an hour before the pain from sitting up began to get to me. He helped me home and I gave him my number.
We were married seven months later. I knew that he was the person I wanted to spend the rest of my life with. When he proposed he said, "I want to marry you and I want to adopt Joel." The day after our wedding, Ryan filed the adoption paperwork.
Credit: Tia Singer Willin
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A month after we were married, we moved to Norfolk, VA, because Ryan had joined the Navy. Life was amazing. We owned a home, two cars, and had money in the bank. I stayed home with the kids, which had always been my dream job. After our third child was born, Ryan decided that his deployments were taking him away from us too often. He left the Navy and we moved back to Florida, where he joined the sheriff's department.
Ryan was that dad, the one all of the neighborhood kids liked. When his car pulled into the driveway, they'd come running. He hung out with them, jumped with them on the trampoline, played manhunt, water guns, everything. He loved his kids and the neighbor kids too.
Ryan and his youngest son, JD. Credit: Tia Singer Willin
Ryan would often get promoted, and after each one, I knew to expect an adjustment period. He'd be a little preoccupied and need extra downtime, but then he'd snap back and all would be well. After he was promoted to sergeant in 2004, though, he started taking his dinner to the bedroom and closing the door. He stopped spending time with the kids. His temper was shorter. He'd throw dishes. He'd yell and punch walls. I was scared to leave the kids alone with him. I was becoming scared to be alone with him.
Finally he became so volatile that in January 2006 I had no choice but to give him an ultimatum: Get help or don't come home. I thought we'd work through counseling; I never thought that things were only going to get worse.
He moved in with his parents. He kept forgetting to show up at work until a doctor from the sheriff's department said he was unfit for duty. One day, when we were all hanging out at his parents' pool so the kids could see their dad, Ryan pointed at our son Jeremiah (JD), then 9, and said loudly, "Where'd you get that one?"
All the kids stopped playing. "That's JD. He's our son, you know that, Ryan," I said. He shook his head. "I don't know him," he replied and got out of the pool.
Ryan's first diagnosis was schizophrenia. The meds he got didn't work. The doctors adjusted the diagnosis--bipolar with psychotic features. Again, the meds didn't work. One day when we were in the psychologist's office, she asked him what floor we were on. We were in a one-story building, looking out over the parking lot and cars. Ryan shrugged. "The third?"
This time Ryan was diagnosed with major depressive disorder, with new meds and a stay in the mental health hospital.
He began to fade fast. He'd become incontinent. He couldn't shower, brush his teeth, or change his own clothes. He ate everything--paper, plants, food off the shelves at the store, pens, even glitter.
When I'd visit Ryan in the hospital, at first he would ask, "How are the kids?" After I'd answered, he'd ask me again two minutes later. That was the sum total of our conversations. He couldn't say anything else except "yep." Over time, he lost the ability to speak. His question became "How'r the kids?" And then "Rrr the kids?" And then, finally, just "The kids?" Those were the last words he said that meant anything.
I kept pressing the doctors, but they were clueless. He'd already had brain scans and there was no tumor. By this time, I'd sold our house and moved into my parents' house with my four kids. I spent hours online, trying to figure out what had happened to Ryan and how we were going to fix this.
By chance, I read a novel where the character's father had Pick's disease. The symptoms were so similar to Ryan's, I ran to the computer and discovered Pick's was part of a disease called frontotemporal dementia, or FTD. But when I told the doctors they were skeptical. FTD was rare. They didn't know what Ryan had, but they were certain it wasn't that.
Luckily, through one of the social workers at the hospital, I was able to get a neurologist whose dad had died of FTD. Finally, in January 2007, Ryan was diagnosed with the disease. He was only 36.
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After fighting so long and so hard to get a diagnosis, I felt victorious. But it was short lived. FTD is fatal, and most people die within five to 15 years after their first symptoms. There is no treatment, no cure, no way to slow or alter the course of the disease. So my heart sank. Ryan was dying and there was nothing I could do about it.
I put Ryan in the car and drove him back to the mental health facility. "Ry, you're really sick, do you know that?" I asked. "Yep," he responded. "You're going to die," I told him, gripping the steering wheel and trying not to lose it. "Yep," he said, expressionless. We rode in silence the rest of the way. Ryan was already gone.
When I got home, I gathered my kids in the living room and sat them down. I told them as gently as I could that we had finally found out what was wrong with their dad. They asked if the doctors could make him better. When I told them no, the inconsolable crying and wailing began.
For two years, Ryan hung on. He moved from the mental hospital to a nursing home--though it was hard to find one that would take a young, 240-pound dementia patient with police and military training--to hospice care. During those years, Ryan stopped saying "yep." He had no personality, no likes, no dislikes. He didn't know us. He never smiled. Never. I really missed his smile.
Ryan and two of his children, JD and Sarah, a year before he died. Credit: Tia Singer Willin
On September 8, 2009, the hospice doctor told me that although Ryan couldn't swallow well, he was still mobile--and he'd probably continue this way for five to 10 more years. So the doctors recommended that he be released from hospice and be sent back to the nursing home.
Hearing he would have to suffer for years without the help of hospice, I was devastated all over again. I had no idea how I would manage the kids, the bills, the new job, and driving an hour-and-a-half each way to visit Ryan several times a week. I found myself at a breaking point. I told God, "Heal him or take him home. I'm done."
Ryan went into a coma that night. He died two days later, September 10, 2009. The kids were 10, 12, 14, and 17 when he passed away. I know it was a relief for Ryan and my children. For me, it felt as if every muscle and tendon and bone was lined with shards of glass and my skin had been wrapped over it. Every movement hurt. Breathing hurt. I used to tell people that I missed him more than I would miss air if I could no longer breathe. It was true, is true. You just learn to live without air.
When Ryan was still alive, the social worker at the hospice wondered why I kept visiting when Ryan didn't know who I was. I told her because I felt I could teach my kids about marriage and love and commitment. I could also teach them about being faithful in the hard times and giving 100% even when the other person gave nothing in return.
Tia and her four children: Joel, Nate, Sarah, and JD, 2009. Credit: Tia Singer Willin
She was concerned and said, "Ryan's not going to survive this disease," she said, "but you and the kids are. You must do more than survive; you must live." After his death, what she said stuck with me even though I wasn't positive what she meant. I equated survival with living. Wasn't it the same thing?
I now know it isn't. Surviving is existence. I had no dream, no desires. Dreams and desires were great ways to get hurt and disappointed, nothing more. I'd lost a lot of friends when Ryan was ill, but I didn't want to make any new ones. Why bother?
But I kept moving forward until I crossed an invisible line in the sand and began to breathe again. Slowly, I started to dream again. Last October, I decided to leave my very good job with very good benefits and start my own business. When you're surviving, you can't risk failure. I think we do better when we climb mountains than when we camp beneath them.
My children are now 24, 21, 19, and 17. They grew up under the shadow of a dying father. FTD can be an inherited disease, and while no one in Ryan's family had it, perhaps the genetic mutation started with him. If so, my kids have a 50% chance of getting it too.
But I've always emphasized that we are a team, that we have to work together to get through things, and they've been very receptive to that message. So my children have overcome and started believing in their own potential, even though my oldest struggled with the after-effects of a brain injury, my middle son has Asperger's, and my daughter has a severe math learning disability. They are amazing and my heroes.
We keep Ryan alive by telling stories about him. He was never a taboo topic because there was so much about his life to celebrate. Every year on the anniversary of his death, we light a candle that burns for 24 hours. Now that the kids don't live at home and we can't always be together on that day, this tradition is even more important. I mail candles to the kids and we all light them so that we can remember him together. His memory will live on forever.
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