My Marriage and Down syndrome

One of the things I’m most proud of is my marriage.

Marriage seems like something so ordinary because it’s all around us. But being a part of something that has potential to last decades and to influence the next generation is not something that should be taken lightly. 

For background, James and I met in high school, though our very first interaction dates back to 1998. James, then in the fourth grade, was excited when the local recreation office started a flag football league. He was less excited when he showed up to a game and saw a fifth grade girl on the other team, the only girl in the league. This girl ended up pulling his flag right before a major touchdown. James hated this girl. “Why do they even let stupid girls play football?!” he had exclaimed.

And that girl was me.

We dated off and on throughout high school in our small hometown. After high school, James left to serve a church mission in 2011 while I was at college. I was briefly engaged to someone else while he was on a mission (only ask if you have time for that story). Once he returned, we found our way back to each other and got married in 2013. There’s a lot more details in there, as you can imagine. But suffice it to say, we have a lot of history. Our relationship is rooted in years of memories and experiences, both good and bad. Before Cooper even came, we had fought our way out of some pretty challenging times. I stand in awe and in gratitude of how our lives have intertwined and all the ways we seem to have been destined to be together.

Then, me and James were thrust into the world of Down syndrome without warning.  And once we arrived there I heard that disability parenting is hard on a marriage. From some unknown source, I learned that the financial, emotional, and sometimes physical strain an unexpected diagnosis can bring is just too much for many relationships to bear. I never looked for a specific source on this, just trusted that those who were saying it knew better than me because they’d been around disability longer than I have. And it frightened me.

What did I do with this scary information about marriage and disability? What I always do when something feels totally out of my control: run headfirst into anything that my mind tells me will help gain control. First thing I did was talk to James about this, and tried my best at controlling the situation by getting his verbal assurance he wasn’t going anywhere. I also tried revisiting some notes on marriage study I’d done years before, straining to recall the things that helped us stay connected in different times. But this particular challenge in our marriage was unlike any we’d ever faced. Our son’s diagnosis will have a significant impact on how our lives will play out. I honestly wondered how having a child different than we imagined would impact our relationship. Could we handle what comes our way?

BUT recently Amy Julia Becker, an author I admire and the mother of Penny who has Down syndrome, shed some more light on this topic in her email newsletter.

She explains how she has found that disability does not doom a marriage. In fact, the opposite is often true, that it enhances a marriage, and she gives sources backing up her claim.

Please see Amy Julia's article here: https://amyjuliabecker.substack.com/p/having-a-disabled-child-doesnt-doom?utm_source=post-email-title&publication_id=1595198&post_id=163575684&utm_campaign=email-post-title&isFreemail=true&r=3w6kdo&triedRedirect=true

and the research article she cites here: https://pmc.ncbi.nlm.nih.gov/articles/PMC4624231/?utm_source=substack&utm_medium=email

This makes sense to me because I know that marriage experts John and Julie Gottman have studied couples who have a “shared goal”- something they work on together- have a stronger, deeper connection, and are therefore have lower odds of divorce. 

And having a child you will most likely have to care for together as you age seems like as good of a “shared goal” as any.

More on the shared goal here: https://www.gottman.com/blog/enriching-marriage-creating-shared-meaning/

Are there challenges associated with parenting in the disability world? Of course. But all marriages will have challenges unique to them, regardless of whether or not their child has disability. Regardless of whether or not they even have children! That's just what happens when two people decide to be in a relationship.

I think for us, our deep relationship has helped us weather the uncertainty that can come with having a child with disability. I look forward to the challenges, the highs and lows that will come as we parent together.

Down syndrome doesn’t have to mean anything for your marriage. But I think it can mean something positive if you let it! Together, you get to choose how you view Down syndrome and its effects on your marriage.

We'll choose to see Cooper as our child to be loved, not a problem to be dealt with. And we'll do our darndest to enjoy every moment we get with him.