We rarely talk about it, but raising a child with disabilities takes a toll on a marriage. As Todd and I celebrate our 25th wedding anniversary, at this turning point in our lives, I'm reflecting back and speaking out about what I've learned.
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. I am happy to report that we have never been stronger as a couple. This summer in particular has been so much fun, maybe because all the kids are also doing well. Conner has moved home and is working. 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. We are laughing and having fun again. 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 amazing contribution that Todd has made to the upbringing of our kids and to building the life we have today. I really see it now - 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. But he’s my rock. I didn't always understand this. As I look back, 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 and I’m so thankful for what we have.
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.
The challenges that Todd and I faced focused on the following:
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 have good, open communication. We’re finally having fun and I feel better than I have in years.
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.
Lanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness.