How Does Having a Child with a Disability Affect a Marriage?

Time for another reader question to help raise awareness of Spina Bifida's effects on the entire family!  Today's question is:

How has having a child with a disability affected your marriage? 

Before having Mason I had no idea of the far-reaching effects a child's medical needs could cause.  The incidence of divorce in the United States is crazy-high and when you add in caring for a child with medical disabilities divorce becomes even more common.  Why?  Stress, money issues, lack of time - those predictors of divorce - are multiplied when you add in the child's medical care.  I know my own situation is not unique! I can sum it up in three words:

Stress - We have all the usual stressors but add in worries about Mason's health, surgeries, post-operative care, physical therapy needs, medications, equipment, changes in function, and so on.  We can let these stresses overwhelm us or we can choose to focus on them as a team.  My husband Jason is the one who works full time outside the home.  Despite that, when he is home he is fantastic about being part of family life with all our children, including Mason and his medical needs.  He diapers, cleans the house, catheterizes, does Mason's enema, lifts, carries, plays, and is a wonderful husband and father. 

What I have to be sure of is that I keep him in the loop of any medical changes.  He rarely goes to any of Mason's medical appointments because if he's not working he's the parent holding down the fort with the seven other children while I go and focus on the doctor's visit.  He also isn't home many evenings when Mason's enema happens.  As we adjust Mason's Miralax dose every day based on how the poop is coming out (or isn't!) I have to keep him up to date on that. 

I also have to be careful not to dump all care responsibility on my husband the moment he walks in the door from work.  Yes, I've been juggling homeschooling, medical care, eight children, cooking, and housework all day every day.  He, on the other hand, braves the world to work hard at a job that he doesn't love in places that are not always the best areas from long before the sun rises often not returning until the sun has set.  I am so grateful for him!  I try not to think of him coming home as my time 'off' Mason care.  Yes, he can pitch in, but I try not to dump it all on him and hide in the bathroom for the rest of the night.  ;) 

Money Issues - As a single income large family money is always tight.  Add in the gas money to get to and from many medical appointments, cost of medical supplies, special foods (allergies), cost of medical equipment, diapers, and more when raising a child with medical needs and money can be spent on paper long before it makes it to the bank account.  Here, too, we can face money issues as a team or argue over it.  As much as possible we try to check with each other before making any unexpected purchases, we stay in touch with bill paying and budgeting, and we try to find inexpensive ways to have fun.

Lack of Time - This area may well be the most difficult in some ways!  We need to spend time together to keep our relationship strong and thriving.  Some of this time can be working together, sure, but to keep our relationship alive we need time to relax together, talk together, etc.  Due to his work schedule many nights he goes to bed before the children and gets up around 3:00am to start his workday, so going to bed at the same time doesn't happen often.

For the last two months we were not even sleeping in the same room because of Mason's medical needs.  While he had his casts on doctors required him to sleep on his back.  No rolling around into weird contortions, especially once they realized how breakable his leg bones were.  So Mommy slept beside Mason for two months.  Not a great way to strengthen a marriage...

Knowing this, we both had to make deliberate efforts to find times to connect.  Some days that was making children move to different seats at the table so we could sit beside each other at meals.  Or it was staying up late when he was able so we could snuggle up on the couch and talk. Or other things.  ;)  It was keeping outside commitments to a minimum so when we could be together, we were.

 

 It was grossing the kids out by kissing often.  It was listening to each other's day and sympathizing with the hard parts.  Or sending a spouse to take a much needed nap. 

Marriage takes hard work but it is worth it!  Selflessness, love, patience, and working together all keep our relationship thriving.  Be sure to share your tips for keeping your marriage healthy in the comments, along with any questions you have for me.