I’m just going to come out and say it - parenting a child with a disability can be incredibly difficult on a marriage. For many of us it’s a taboo subject. We just keep these feelings inside. As my husband, Todd, and I celebrate 25 years this month, I have been reflecting on our personal journey and am sharing it in case it helps others feel less alone.
Todd surprised me with a second honeymoon trip to celebrate our 25th. This summer has been so much fun, maybe because all the kids are also doing well. Conner has moved home. It’s been fun seeing Dalton come out of his shell and love advocacy work. Now that the kids are good, it’s allowed me the time to work on myself and my marriage. Todd and I are communicating more than we ever have, we’ve tried new things, and met a lot of new people. This is probably why I feel safe sharing that it wasn’t always like this.
There were many times over the last 25 years that I wasn’t sure we would make it to the next anniversary. We had so much stress in our lives and that made communication very difficult. It was hard to juggle everything and find time for ourselves and each other.
Todd and I met when we were 26, married less than a year later and became pregnant with Conner quickly. We soon found out about his hearing loss, then about Usher syndrome a few years later. We took on our respective roles in advocating and providing for our family. But, with all of the challenges we faced we'd often grow apart. We were angry at times. We grieved separately when we should have held each other up. I realize now that we were both just trying to survive. When we got pregnant, I had this fairytale vision of what parenthood would be like. Our parenting journey was very different. I wouldn’t change it for the world, we grew into the people we are today, but it wasn’t what I envisioned as a young mother. We definitely were in Holland.
Fast forward and 2023 started with me having a bit of a breakdown. I had a heart-to-heart with myself. I began to really focus inward so I could be the best version of myself. Through that process, I realized that many of the challenges Todd and I experienced in our 25 years have created a lot of pent up trauma. One way I’ve started to work through this has been to write my story into a book, something that Todd has been encouraging me to do for years. The writing process has been cathartic. Todd and I read the draft chapters together. It’s created a new shared understanding of what we went through during the early years of our marriage (this was a recommendation of my therapist). Listening to him tell his perspective on the trauma has been eye opening. Let me tell you that this is hard work - addressing all these emotions, especially together.
Through this process, I’ve come to recognize the contribution that Todd has made to the upbringing of our kids and to building the life we have today. I see things that I didn’t see before. When we were in the midst of all that trauma all I could focus on were the negatives. As I look back though, whenever I would break down, when I would be at a loss for what to do next, I would pass the baton to him and he’d just make it better or get stuff done. It’s hard to see that when you are angry, frustrated, or grieving. I see it now.
For years, I’d look at couples who didn’t have children with a disability and I just couldn't relate. These couples were planning birthday parties and playdates while I was praying that my child would just get included in these things - just once. When my sons were invited, the amount of planning that went into making sure these experiences were stress-free was enormous. From my vantage point, these couples seemed to be more connected and having more fun than I thought I’d ever have again. I would think to myself…I used to be fun, right? All I seemed to do was stare at the crazy-busy family calendar and wonder how we were supposed to make it to all the doctor AND THERAPIST appointments in order to get our kids what they needed.
As time went by, I made new friends who, similar to us, had children who are deafblind. I was secretly curious if they had happy marriages. I would wish I could talk openly to ANYONE about the challenges. But, I couldn’t find the words. No one talks about marriage struggles and how hard it is for those who have children with disabilities. No one talks about it until it’s too late and I didn’t want that to be us. I’m so thankful that Todd and I found the courage to finally open up about the hard stuff and find a way to make time for ourselves. Our lives are still incredibly stressful, and most people we know wouldn’t understand, but I love the life we have built. I do wish Todd and I would have found a way to have these conversations earlier, but it's never too late I suppose. We still have a lot to work out together but we are showing up for each other.
The challenges that Todd and I faced focused on the following:
Emotional Stress: Feelings of grief, guilt, frustration, and helplessness. These emotions can impact a marriage, leading to tension and misunderstandings between partners.
Financial Strain: When we learned that Conner was deaf we were told that cochlear implant surgery could cost more than 50K - and that insurance probably wouldn't cover it. Many families choose to have one parent stay home. Caring for a child with disabilities often involves additional medical expenses, therapy costs, and specialized equipment - and funding these needs on one salary can be crippling.
Time Constraints: There is never enough time in a day. For us, having 4 kids, we were burnt out and that made it hard to find time for intimacy. And, don’t get me started on the crazy shared family calendar that I kept up to date.
Differing Coping Mechanisms: Todd and I had very different ways of coping.
Parenting Disagreements: Todd and I also had very different parenting styles.
Social Isolation: It was just so darn exhausting to answer people honestly when they asked how I was doing. It was easier to just smile and say “fine”. This led to feelings of isolation, which impacted our relationship.
Resentment and Burnout: The continuous caregiving responsibilities can lead to feelings of resentment and burnout in one or both partners.
Lack of Personal Time: I am someone who needs a huge amount of downtime in order to recharge. Our time was so limited that I wasn’t able to get the time I needed, which led me to shut down emotionally.
Overcoming (even acknowledging) these challenges seemed almost impossible until this year. I’m thankful we didn’t give up on each other and we are now able to communicate better.
So, if you have feelings like I did, know you aren’t alone. Maybe if we all talk about how hard this all is more there won’t be feelings of shame by even bringing up the topic.
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