For better or worse, in sickness and in health, until death do us part.
We truly mean these things when we enter into marriage or a committed relationship. Be we also know that in this modern era, death isn’t always taken literally, nor should it be. For some of us “death” might mean adultery or abuse or that we have drifted and changed so much the relationship has died.
Having children, while a natural progression for many couples, can be particularly challenging. As much as two people love each other, the different views they have on how to raise a child can cause the marital bond to splinter. In fact, research shows that the more children we have, the bigger the strain on that partnership.
Raising a child with a disability adds an extremely complex dynamic. If left unattended, those splinters can turn to fractures and eventually a full on break.
Accurate divorce rate data for couples who have a child with a disability is lacking. A 2015 study from the National Institutes of Health (NIH) found a higher rate of divorce and marital discord among parents of a child with a disability compared to those without. The study followed just 190 families affected by disability and more than 7,000 families with children without disabilities over 50 years. A sample that small over a time period where community supports for people with disabilities has changed drastically is not the best measure of how things actually are right now. However, the NIH had one particularly noteworthy observation, “Since the stress of caring for a child with disabilities is life-long, parents of children with disabilities may experience a prolonged period of vulnerability to divorce and thus a life course perspective in the design of research is needed.”
‘Til death do us part takes on a very literal meaning for parents who have a child with a disability. Even if our marriages don’t survive, we will be in each other’s lives for as long as our child is in ours. Our child’s needs means we are forever intwined with our co-parent.
That’s why it is imperative that we put the work into the relationship with our partner. It is easier said than done considering the stress we’re under.
In most couples, one person assumes the primary caregiver role. This person is the conduit between therapists, doctors, teachers, and many other people orbiting the child’s life.
I talked to a number of people about how their child’s disability has impacted their relationship. And how they try to keep their union strong despite all of the stress put on it. All of these interviews were done anonymously to allow for candid responses.
One mother told me that her role as the primary caregiver has caused many fights. “I was learning so much from early interventionists coming to our house when our child was young. When I tried to show my husband what they were teaching me, he didn’t want to listen. So I would sort of coach him when he was parenting which didn’t go over well. Now my child is older and I keep a lot to myself because it’s easier that way.”
“The stress is so great that we argue about nonsense sometimes. We constantly have to remember that having kid-free alone time is vital to sustain our marriage,” said one stay-at-home parent.
A working mom of 3 said, “Having a child with a disability (and two other children) has certainly added more stress in our relationship. However, I also feel that going through some of the challenges together has made us stronger as a couple. I respect and appreciate my husband greatly. He is infinitely patient and gentle with our daughter who has Down syndrome. His easy way with her is simply beautiful and I love him more because I have had the opportunity to see this side of him.”
“In some ways it makes us closer. We are constantly having to be strategic with matters of nutrition, inclusion at school, therapists, attendant care, the list goes on and on. We are brainstorming together all the time to figure out what is best for our daughter. But the negative aspect of this is parent guilt. When things aren’t going well in certain areas, we can sometimes move into blaming territory. You don’t read to her enough. You feed her crappy food that she shouldn’t be eating. Two real arguments by the way.” The Charlottesville area parent added, “There are good and bad moments. The best moments are when our brainstorming and research pay off. And we feel joy knowing the large or small victory was earned together as a couple. To me, the positive stands out more than the negative.”
“The day to day stuff is the hardest. I am learning all of these strategies to help our child achieve their best life. But when I step away, it feels like everything I’m working on is undone. The television goes on immediately. Behavioral strategies are ignored. Medication is forgotten.” The mom from Northern Virginia added, “But in a crisis, we are an amazing team. The bad times remind me I chose the right partner and there is no one I’d rather be in this with.”
Marriage is complicated deal we enter into. We celebrate this life-long contract with a big party and fancy clothes. Our wedding day, that picturesque party, is the exact opposite of what marriage is. Marriage is messy. It is hard. It is compromising every single day. It is being annoyed and, if we’re being completely honest, in some moments hating the person you have chosen to spend your life with. There are days when the sound of your partner’s chewing might make you want throw your mug at them.
I’ve had days where I’ve wanted to throw in the towel. When we’ve fought about something ridiculous and we’re too mad to speak to each other. In those moments of anger, when I think about giving up, I realize that no matter what, my husband will always be a part of my life. Our son isn’t going to follow the typical timeline: graduate, get a job, move out. Even if he lives on his own, he will need support. His father and I will be heavily involved in his care, and in turn with each other. For better or worse, til death do us part, married or not.
So I heed the advice of my therapist along with a dear, wise friend.
My therapist encourages me to remember that in most relationships, the intention is good. As partners, unless you’re in an abusive relationship, the intention is never to hurt the other. We need to hold that in our heart as we move through our lives. I am willing to bet that most of the things couples bicker about were not intentionally done to cause irritation or anger. We’re all just trying to get through our days. The malice only comes out in rage. So if we take a moment to check our anger and think about intent, we might be able to prevent much of the stress in our relationships, and in life.
And that wise friend. She reminded me that every relationship has its ups and downs. Marriage is not all sunshine and rainbows. The pictures we see on social media of hugging and smiles are just a filtered snapshots of one moment. We always need to look at the bigger picture. Is this person we chose kind? Do they love us? Do we love them? In a very basic way, that’s enough. The butterflies and infatuation fade no matter who we’re with. Focus on what you have. Be present. Grab a surfboard and ride those tough waves. They are unavoidable.
It’s a long haul. We’re not always going to like the person we love. That’s OK. That’s what the couch is for.