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‘This Is Us’ explored the difficulties parents of disabled children face. There’s also hope.

A disability diagnosis for your child doesn't mean you’re headed toward divorce. 
Image: Chris Sullivan as Toby and Chrissy Metz as Kate in Season 6 of "This Is Us."
Chris Sullivan as Toby and Chrissy Metz as Kate in Season 6 of "This Is Us."Ron Batzdorff / NBCU Photo Bank

I’ve been a “This Is Us” fan since the show’s beginning and have watched this final season with all the bittersweet feelings of knowing that these very real, very flawed, very striving human characters whom I’ve become attached to over the last six years would soon take their leave. I prepared to watch the series finale on Tuesday by clearing my calendar for the night and having tissues on hand.

I was moved by all of the characters’ growth this season, but there was one major plot line that hit particularly close to home: the unraveling of the marriage between Kate (Chrissy Metz) and Toby (Chris Sullivan).

Series creator Dan Fogelman has spoken about why he included this plot line, citing that 50 percent of marriages end in divorce and that, while painful, he wanted to illuminate what could be “human, and its own way, beautiful” about divorce. He’s achieved that goal through stellar writing and the phenomenal, emotionally connected acting of Metz and Sullivan.

I recognized the fights portrayed between Kate and Toby from our own struggles in those early years.

And yet, as a mother of a child with a disability, I desperately hoped that this storyline might have had a different ending, one in which Kate and Toby manage the pressures of how to best parent their child Jack, who is blind, together. That would tell a story that doesn’t get told often enough: A disability diagnosis for your child doesn't mean that you’re headed toward divorce. 

That story would have challenged an important trope about parents of disabled children. It’s one my husband and I defied, even as we experienced the special challenges this situation entails. A 50-year study conducted by the University of Wisconsin-Madison and published in 2015 found that, contrary to popular belief, divorce rates were not higher in families with a child with developmental disabilities.

Of course, a disability diagnosis can put tremendous stress on a marriage. My husband and I experienced that after we were shocked by news of our son’s autism diagnosis at age 3. Six months earlier, he was a mostly content child, expressing his inner happiness through a big, bright smile. He loved to take walks, play with Play-Doh, color with crayons, listen to music … typical activities of a 2 year old. His speech was delayed, but countless experts thought that was because of his chronic ear infections and that, after he got tubes put in at 2 1/2, his speech would naturally begin.

That didn’t happen. Instead, his frustration at not being able to express himself increased rapidly to the point of frequent meltdowns. Previous outings that he had loved, like going to the grocery store, became sensory nightmares where he would panic and run away from me. After a long series of misdiagnoses, we finally determined that he had autism — when the diagnosis was eventually reached, we were actually relieved because we could begin getting him the therapeutic services to help him learn to communicate and regulate his sensory system. 

After receiving his diagnosis, our son entered the early intervention system and we, as parents, became responsible for managing therapies and education. My son was given occupational therapy and speech therapy, a special education teacher to come to the home every week and a play group to work on social skills. In elementary school it became clear that he also had an intellectual disability, and he suffered from gastrointestinal problems that required me to research and prepare special foods (that he then refused to eat).

These therapies and treatments were all blessings, but also huge responsibilities to manage as I was trying to learn about the diagnosis and what it would mean for my child’s life. At that time, I had a part-time job and my younger child was an infant. Many nights I collapsed onto the couch in tears when my son, who no longer slept through the night, finally fell asleep.

I was the one who organized my son’s therapy schedule and handled the schlepping to all of the appointments. Everything that I read said that time was of the essence, that the best outcomes occurred with early intervention therapies. I internalized that pressure and tried to make everything into an educational moment, which was not sustainable.

My husband was working full time so we could pay the mortgage and bills and have the decent health insurance that we desperately needed. There were mornings when he would leave the house dressed in nice clothes, briefcase in hand, while I didn’t have time to get out of my pajamas as I guzzled down lukewarm coffee with two crying kids clinging to me — and resented the hell out of him. Then there were nights when he came home exhausted and stressed, yet I demanded that he immediately participate in therapeutic playtime — and he felt the same way toward me.

I recognized the fights portrayed between Kate and Toby from our own struggles in those early years: Toby feeling that Kate wouldn't give him a chance to parent Jack in his own way, Kate devoting all of her energy to making sure that Jack could become as independent as possible. When Toby lost it, telling Kate that the reason he took a higher-salary job away from his family was to pay for everything their child needed, that resonated. When Kate stood firm that moving Jack from the environment he knows so he can be near Toby’s new job would harm his development, I understood her concern.

Stuck in their own pain and the unspoken vulnerability that their son’s diagnosis unleashed within them, there seemed to be no room for them to hear each other. By the time Kate and Toby went to therapy, it was too late. They sat in the therapist’s office, emotions frozen, communication shut down.

When my husband and I came close to those moments, we didn’t have the money to go to therapy together, but we both knew that we needed to do something before things got worse. We read a dog-eared copy of Harville Hendrix’s “Getting the Love You Want” chapter by chapter, talking each week when the kids were down to sleep and sharing what we felt. It helped. We started to demand less from each other, to think more of each other, to offer little kindnesses.

I have met so many couples raising children with disabilities who find a way toward each other, whose relationships deepen through the challenges that they face, and I want couples who are struggling to know that this is possible.

My husband wanted to take an active role in our son’s therapy and education, and we soon started a new parent-based training that changed our paradigm so we could be working together. We recognized the sacrifices that we were each making and tried to appreciate each other. We found babysitters and went out once or twice a month, even when we could only afford to get coffee and take a walk. Those small breaks recharged us. We laughed, we talked about things other than our kids, we remembered what had drawn us together before this point in our lives.

Our son is now 19, and I credit that book with saving our marriage. I now share our story and this path with others not because I think that we're special but because we aren’t. I have met so many couples raising children with disabilities who find a way toward each other, whose relationships deepen through the challenges that they face, and I want couples who are struggling to know that this is possible.

These are stories that need to be told, and the writers for “This Is Us” could have brought to life a magnificent story about Kate and Toby finding their way together. I celebrate the ending of their story that the writers gave us in the season finale, but I'll also imagine what might have been.