“I have three children; my middle son, Ben, has multiple disabilities. He has been diagnosed with spastic quadriplegic cerebral palsy, ataxia, epilepsy, and severe developmental delay, including communicative and gross motor. He is a non-verbal, 3 year-old trapped in a 20 year-old body and will require 24/7 care for his entire life. You can imagine how terrified I was of being a single mom caring for him by myself.
I had already failed three times at ending my marriage – fear always crept in, filling my mind with doubts. Being in a domestically abusive marriage for 17 years had taken its toll on me emotionally. I lacked self-esteem and confidence. My spouse had embedded into my head that nobody would want a woman with a handicapped child. I would be alone for the rest of my life if I left him. So, I went through the motions for the last 6 years. I no longer loved or respected him and did not like the person he’d become. I struggled to keep our family together. I tolerated the abuse and sacrificed my own emotional well-being as long as I possibly could.
In November of 2014, Ben underwent knee surgery, soft tissue lengthening, and extensive osteotomies. He didn’t recover well, and there were many complications. As I slept next to him each night, I felt so alone and asked myself what I was doing with my life. It was in that hospital room I realized my marriage was over. We got Ben home, and I focused on his grueling recovery for the next three months, while going through the motions of married life. I met alone with our marriage counselor to share my thoughts and ask for guidance. In February of 2015, I hired a lawyer.
For the first time in my life, I chose me – my own happiness. My life had become a living hell. The hostility, anger, and verbal abuse I dealt with on a daily basis was almost unbearable. But, I had an amazing support network. My spouse ceased all contact with Ben. In his mind, that was my punishment. Having to care for Ben by myself, day in and day out, would make me realize I needed him. That didn’t happen. For almost two years, I regularly met with a psychologist and worked on myself. I was in a good place; I was happy. I felt free and could breathe. No more walking on eggshells.
By January of 2016, Ben had grown so much I could no longer carry or lift him. If my oldest son wasn’t home, I was unable to bathe him, because I couldn’t get him in/out of the bathtub by myself. My new focus was my accessibility journey – achieving 100% accessibility in my home so I could care for Ben without injuring myself. Six months later, I hired a contractor to build an accessible bathroom with a roll in shower. Victor was fabulous to deal with. I enjoyed speaking with him each day. He was very knowledgeable and had so much compassion and empathy. I was amazed by his interactions with Ben. It made me want to know who this guy was!
A few months after the bathroom was completed, I had Victor come back to paint my kitchen. He shared he was newly separated, and we got into some deep conversation. I was surprised at how much we had in common. He too spent many years sacrificing his own emotional health, ignoring his feelings, and trying to make everyone else happy in order to keep his family together. We both had spouses who had the mindset marriage trumped your own happiness; keeping the family together was more important than anything else; and choosing your own happiness was selfish. They would blame menopause or accuse you of having mental issues requiring medication.
Victor and I began talking every day for hours on end. It started out talking about our spouses, our children, the breakdown of our marriages, and what was going on each day – sharing each other’s drama. After a few weeks, there was a slight shift. We started looking forward to talking to each other. Our conversations started becoming about us. We were sharing personal stories, our favorite things, our bucket lists, and where we wanted to travel. We were sharing childhood stories, likes, dislikes, and how our days went. A beautiful friendship formed.
After four weeks of talking and texting each other every single day, we took the plunge and met in person for coffee. There was no denying we had a connection; it was unreal. We sat and talked for hours, neither one of us wanting to leave the other. We laughed so much. It was beautiful. But, it wasn’t long before our spouses found out about us. Of course, the extreme level of hostility, anger, and verbal abuse had our lives spiraling out of control. Our spouses were determined to destroy our characters.
Rather than accepting the facts and the truth of why both our marriages had failed, the stories of infidelity and multiple affairs started – half-truths and exaggerated tales told to anyone who would listen. Parental alienation began, making the kids choose sides and involving them in our personal business. The actions and behaviors were so inappropriate and unhealthy. It was terrible. We had a choice. We could part ways and each deal with our own chaos, or we could hold on tight and continuing exploring whatever it was developing between us. We both chose to hold on tight. In fact, the next week, we went out on a date and spent the evening talking and laughing. It was magical, and after that evening, there was no turning back.
We were inseparable. All the negative we were both dealing with just pulled us closer together. It wasn’t long before we moved in together. Our able-bodied children disowned us. There is nothing more heartbreaking. For your children to not care about you, not care about what’s in your heart, not care about your feelings or your happiness. That is difficult. The only thing you have control over in your life is your own actions and behaviors, so each time we’re dealt with bullying, harassment, or name-calling, we act with kindness or we don’t react at all. We just focus on our life and the positive.
We did our best to settle into being a couple, despite all the outside interference. Victor came to know Ben on a more personal level. They too had this instant connection and adored each other. Victor learned all the daily care-giving Ben required, and things were going well. Five months later, Ben had a medical crisis. Unbeknownst to us, he had a twisted bowel and required emergency surgery. We almost lost him. I really thought that would be the moment my ex-spouse finally let go of his bitterness and resentment and came to his son’s bedside. But he didn’t.
Ben required a colostomy and didn’t recover well after surgery. It was one complication after another. We were in the hospital for six weeks, and he failed to thrive, which resulted in another surgery to insert a g-tube. I was an emotional wreck on the inside, just hanging on by a thread. But I refused to let myself be vulnerable. After 18 years of special needs parenting, I was accustomed to not needing anyone, to handling things on my own. Well, this didn’t go over well with my Victor. He wanted to take care of me; he wanted to take care of us. He was like a caged animal whenever something was going on with Ben.
I felt like this was our turning point. I had to open myself up to him, or I might lose him. So, I let him see me crumble. I broke into a million pieces. I let myself be completely vulnerable for the first time in my life. He put me back together. He got me back up on my feet again. He took those special needs parenting reins that day, and he has been pulling Ben and I though everything life has thrown at us.
It takes a special man to come into your life and love your children. But, for a man to jump in with both feet when you have a child with multiple disabilities who will require 24/7 care for the rest of his life, that’s unheard of. It shows his true character and the capacity in which he loves.
We have been together almost three years, and in that time, Victor’s father, mother, and one of his brothers has died. Ben has had two medical crises, three surgeries, and we’ve spent a total of 10 weeks in the hospital with him. Life is so precious, and yet, some people choose to hold on to resentment and bitterness instead of choosing to love. Instead of choosing to listen, to try and understand. Instead of choosing forgiveness.
It seems like every time we take a step forward with our kids, we take five steps back. My children are finally coming around – especially my daughter, because she needs and craves the closeness of her mother. Victor’s son is also finally coming around. However, he is always dealing with outside interference, which breaks our heart. And Victor’s daughter still chooses to not be a part of his life, no matter how many times he reaches out to her. He hasn’t seen her in three years, and I know a piece of his heart will always be broken as long as she denies him a relationship with her.
Despite the trauma in our lives, Victor and I are closer than we have ever been. We were married on February 23, 2018. This beautiful man is not only my husband, he is my best friend, my soul mate, and the love of my life. We are two beautifully broken individuals who found our way to each other. Who both sacrificed so much in order to love what matters – ourselves.”
**This story was written by Diane Neves and originally appeared on Love What Matters.