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How a Kid with Special Needs Affects Your Marriage

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Sometimes the needs of my child overwhelm the needs of my marriage, but there are still beautiful moments of tenderness.

couple holding hands

Ellen S: This morning, I was trying to get up a flight of stairs at the train station, only there was an elderly couple in front of me moving in slow-mo. As I trudged up behind them, going at their pace, I noticed how gently the husband was cupping his wife's elbow. Then they got to a landing, and as I darted around them, I heard him say to her, in the sweetest way, "Are you tired, sweetheart? We can rest here a while."

That just about made me melt. And it made me a little wistful, too; I want a relationship that's just as tender. So often, though, ours is tension-filled. Dave and I love each other deeply. Yet there are so many details about our 7-year-old, Max, to look after, so many ways we could be helping him do better, so many anxieties about his well-being, that at times they form a gray cloud hanging over our relationship. Max has cerebral palsy, due to a stroke at birth. He's doing so much better than the doom-saying doctors said he would, but he has his challenges.

These are the things Dave and I might go back and forth about during any given week:

  • I know you don't want Max to wear his bib in public, but he needs to wear it or his shirt will get wet from the drool.
  • If you keep feeding him everything, he's never going to learn to feed himself.
  • Uh-oh, why is Max suddenly so sleepy? Do you think it's a sign of seizures?
  • Did you give him the seizure medication this morning?
  • We have to order more seizure medication.
  • Sigh, he's pretty upset, I'm not sure Max is going to let us stay for dinner at this restaurant, it's really noisy, he hates noise, maybe you'd better take him outside. OK?
  • We'll take turns eating.
  • The insurance company is saying they won't pay for any occupational therapy whatsoever, your turn to deal with them!
  • We both really need to work on the toilet training, otherwise Max will never get there.
  • I do not think it is good for Max to sit on the floor and push the same car back and forth and back and forth for a half hour -- can we get him to do another activity?
  • His right leg seems really tight. Do you think he's going to start needing Botox in his leg? Speaking of which, isn't he due for a visit to see if he needs more Botox in his hands?
  • And so on and so on.

I can honestly say that there have been times when the stress and fatigue have been so great I have snapped at Dave for no reason at all. I can honestly say there have been times when Dave's oh-I'll-let-her-handle-it attitude has gotten to me so much I could have cheerfully clonked him. I can honestly say that there have been times when the worries about Max have been so overwhelming that I have not felt like having sex. I can honestly say there have been times when I've looked at our wedding pictures and wondered what happened to that glowingly happy couple.

I can also honestly say that our marriage still rests on a base of mutual adoration; we hold hands when we walk down the street, kiss just because, plan date nights, find other places to do things when the kids take over our bed. We respect each other's strengths: I am the researcher, the booker of appointments, the scheduler, and Dave is Silly Doting Daddy who can get Max giggling with his crazy noises and funny games and fart talents. We compensate for each other's weaknesses: Dave yanks me back to reality when my fears get the best of me, I point out when he's in denial. We can make each other laugh, even when things get totally insane. And we have together experienced moments of amazing euphoria with Max, bursts of bliss only parents of a child with special needs could experience. Like when Max took his first few steps, the steps doctors told us he might never take. Like when Max does anything for the first time. Or when a doctor recently told us Max would probably be a mainstreamed adult when he grew up.

I do not think our marriage is stronger from raising a child with special needs. Nor do I think its roots are decaying and, like some big old oak tree, it's at risk of someday toppling over and crashing. What I know is that our marriage is solid. It's been through the worst of storms, it's survived, and while it may not be perfect, it is good. We are happier together. We are tougher together. We are better for Max together. And there is love, there is always love.

next: Mom's Gingivitis Leads to Baby's Death
3 comments so far | Post a comment now
shannon January 27, 2010, 8:45 AM

So much of what you say is true. I feel so sad when I hear of couples divorcing when they have a child with special needs. We don’t get out on “date night” as much as we should and any alone time to just talk and catch up and just be a couple usually comes at the price of some valuable sleep time, but we know we love each other and parenting our children separately is just not an option, we are better together and we are better for our kids together. In it for the long haul.

Great article thanks.

Jennifer A January 27, 2010, 11:11 AM

A normal marriage is work, one with a special needs child is a constant uphill battle. We have seen many families around us crumble due to caring for a special needs child and most have divorced. I have a son with SPD disorder and we are back up caregivers for a brother who is developmentally delayed, deaf and autistic. As long as you remember to focus on being a couple, not just parents, things can work.

Yvonne P. January 28, 2010, 12:21 AM

Thank you Ellen 4 sharing your story about raising a child with special needs. I believe strongly that most can’t understand until they’ve done it themselves. I’ts even more of a challenge when he or she is one of twins and mom tries to do it herself with no support, my EX.could’nt handle it! Sometimes siblings take it hard as well. Little sister says”why do you love him more than me,or other twin”? OMG I can’t count how many times I’ve had 2 remind her that I love them all the same. He simply has more special needs.I could go on and on with my story,but this is enough. Thanx again, I can only wish that I’ld have had a situation more like yours,B thankfull.

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