Having a child with disabilities can introduce a host of issues into a marriage or romantic partnership. While researchers don’t agree on exact numbers, more than one study has shown that these couples are at a higher risk of divorce than the general population. This isn’t surprising. Special needs parents can experience a great deal of pressure, as well as a good amount of emotional, financial, and sometimes even physical stress. They often have to face an entirely new reality while juggling insurance claims, medical bills, therapy appointments, and behavioral issues.
My family is no exception. Before the first symptoms of JJ’s Rett Syndrome appeared, the four of us were chugging merrily along. Then, in quick succession, came a global pandemic, a job loss, screaming meltdowns, brain surgery, and multiple serious diagnoses. After JJ’s initial meltdowns abated, we enjoyed a short period of calm before, within the span of a few months, she lost most of her vision, hand use, and ability to walk on her own.
Even a few of these events could have been enough to crack my marriage wide open. But instead, my husband and I are going stronger than ever. I’ve never loved him more, nor felt closer to him than I do now. Why is that, exactly?
I have a theory.
When you face something truly difficult—a child’s diagnosis, a serious illness, a job loss, or a death, for example—you and your partner enter a new world of extremes. Because of the many large-scale changes, pressures, stressors, and crises, the two of you can’t help but change. You have the opportunity to become the best versions of yourselves, the worst versions of yourselves, or something I’ve started to call your “best worst selves.”
I think everyone knows what a person’s “best” self looks like. This is the you who rises to the occasion, who becomes the strongest, bravest, most compassionate, most loving, or most selfless version of yourself. When I picture my husband’s best self, I see him sleeping on the floor of my daughter’s hospital room after her brain surgery. Holding me in his arms while I sob so hard, I almost lose the ability to breathe. Calmly squeezing my hand while doctors tell me things I never thought I’d have to hear. Day after exhausting day, feeding, bathing, diapering, and carrying a little girl who can do none of these things for herself.
I have a best self too. I gave up a job I loved without hesitation when JJ needed me to care for her full time. I’ve spent hours filling out paperwork, messaging doctors, planning trips to specialty clinics, and scribbling down notes during therapy sessions. I was on that hospital floor too. And I’ve certainly done my fair share of the feeding, bathing, diapering, and carrying.
But while our daughter’s disease creates opportunities for our best selves to shine, it can also do the opposite. It often means my husband and I are pushed past our limits, put in situations that trigger our weaknesses, and forced to do things we never thought ourselves capable of doing. We have to operate on little sleep, under extreme pressure, and in the grip of bottomless grief—not once, but over and over and over again. After we’ve been pushed to the edge too many times, the inevitable happens: We lose our patience, break down, and feel ourselves crack in two.
In these times, we’re certainly not our best selves. But—and here is one of the big secrets to our success, I think—we’re not our worst selves either. These would be the selves who gave up in some way, on a permanent basis—doing things like refusing to acknowledge reality, checking out emotionally, giving in to an addiction, or leaving the family all together. If my husband or I did any of these, I honestly don’t know if we'd be able to forgive one another.
Instead, when we are pushed past our limit, our “best worst selves” come into play. These are the selves who stumble and fall—sometimes spectacularly—but who eventually get back up again. Who, despite all the difficulties, make the decision to stay in the family, to keep loving, to keep hoping, and to keep trying. No two people have the same weaknesses or breaking points, so what triggers this version of ourselves will be different for everyone.
For me, it happens most often during mealtimes. Our daughter cannot feed herself and is a terrible eater. When she’s tired or doesn’t feel well, we have to spend hours cajoling and bribing her just to get a few bites of food past her lips. Even though she’s underweight and has trouble chewing, she doesn’t yet have a feeding tube, as many people with Rett Syndrome do. But I feel this possibility hovering over every difficult meal like a ghost, haunting me. If things go badly enough, I become so frightened and caught up in this vision of the future that I lose my patience. I snap at people. I stomp around the room. I throw my fork down on the table in frustration.
Instead of judging me for my outbursts, my husband always steps in to help. He shoos me away to go calm down and picks up the fork himself. When he reaches his own breaking point at other times, the same thing happens in reverse. Then I’m the one doing the stepping in and shooing away. No one spends any time guilt tripping or assigning blame. We just do what needs to be done.
These periods of grace and forgiveness are essential in the pressure cooker that is special needs parenting. No one is strong enough to withstand the stress without cracking once in a while. And when that happens, each member of the partnership has a choice. One person must decide whether or not to step in and help, forgiving their partner their outburst. But it’s really the other person who has the most important decision to make. This person must ask themselves if they’re going to stay on the ground after they’ve fallen or get back up, dust themselves off, and soldier on. I’m profoundly grateful to be in a relationship with someone who makes the right choice, again and again, because I know that not everyone is so lucky.
In addition to our “best worst selves,” there’s another component to my theory about strong special needs marriages. I believe that both partners need to share a common goal. All of us operate more effectively if we know what we’re working toward and what we we’d like to achieve together. Again, this is going to vary greatly. The goal could be anything from beating your child’s disease, raising funds for a cure, advocating for better support systems, or providing the most loving home environment possible.
In my marriage, our mutual goal is simple: to live with no regrets. Years from now, as we reach the end of our lives, my husband and I want to feel that we led it with integrity, without any what ifs, if onlys, or should haves hanging over us. We want to have done everything we reasonably could for our daughters and our family.
I hope with all my heart that JJ will be there with us too—either standing next to us or seated beside us in a wheelchair. But my husband and I both know there’s a higher-than-normal chance she won’t be there at all. The terrifying truth is that we cannot do much to change that outcome. What we can control, though, are the choices we make and how much work we put toward our goal. Whenever life knocks us down, we can make the decision—together—to get back up again.
In your opinion, what makes special needs marriages unique? What are the things that can strengthen or weaken them?
Let me know in the comments below.