What it’s like being trapped in a special needs marriage

What it’s like being trapped in a special needs marriage

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Just last summer I wrote about a study that found married couples who are the parents of a special-needs child, specifically parents of children with Down syndrome, are less likely to separate than couples raising normal-ability children.

*Me, my husband, Daniel (now 6), and Frankie (now almost 5).

The study, which included 375,000 families,called the phenomenon “The Down Syndrome Advantage.” Researchers found that parents of “normal” children were 10.8 percent likely to divorce, while the parents of children with Down syndrome were only 7.8 percent likely.

Our son Daniel, who has Down syndrome, is now 6 years old. I still usually feel that, with my husband and me, it is “us against the world” and that our bond as shared caregivers of Daniel is unbreakable – most days.

* Our whole family January of 2016

But, there are always those other days. Days where being the main caregiver of a special-needs child – plus three more – really makes me understand how a woman can feel a little less than warm and fuzzy towards her husband. And perhaps a little trapped.

Being the mother to four young, overly-energetic boys (one with Down syndrome) can be exhausting. To always be needed.needed.needed.needed.

To be the only one in charge of therapies, everything school related, what each grunt and cry means for our non-verbal child, being in charge of every meal for someone with very limited feeding ability, it can be overwhelming.

Your needs go to the back burner and you dream of someone who will come in (perhaps that someone is Edward Norton or Nicholas Cage. I have weird taste, I know) on their white horse and make you their number one priority.

Because, with jobs, families, and chores, it's not surprising that you wind up being on the bottom of your husband’s priority list too.

You start to lose that teammate mentality and your husband’s suggestions of “we” turn into “you.” “Why don’t we take Dan to get his ears checked?” This actually means, “Can you just take care of it?”

A recent article posted in Huffington Post by a fellow special-needs mom had me nodding my head YES. She describes her relationship with her husband,

“I think this understanding and the language we use to address an ever fluctuating scale of shared responsibility is what holds so many relationships together – and at the same time causes them to fray…instead of ‘we’ need to fix this now – whether he meant me or the two of us – I wanted him first to share in my confusion. I wanted him to say ‘damn – you, and we, are dealing with a lot – and this is hard...’

When it comes to kids, special needs or not, most of the time it’s not so black and white – it’s largely gray – and together we have to learn how to live, to love and to speak about that before ‘we’ can move on together.

We’re working on it – the two of us.”

Because, whatever I may be feeling about being “trapped,” about being the only one in charge of so much, about really letting myself and my needs go-thus making me a frazzled mess-thus making me less desirable-thus making me even more trapped…maybe my husband is feeling the same way. Maybe he feels trapped with me.

*My husband and me on our wedding day.

Maybe this mutual entrapment is a good thing. I don’t know, I’m not a marriage expert. But maybe tonight the kids will go to bed without a struggle. Maybe we will sit down on the couch and laugh at what our lives have become. Maybe we will happily watch a movie together. Maybe it will be one with Nicholas Cage in it.

Photos: Whitney Barthel, VPD Studio

Opinions expressed by parent contributors are their own.

Watch the video: special needs couple getting married at a nursing home (July 2022).


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