Our daughter, Casey, required around-the-clock care. Someone had to manage her airway, her feeding, her medications, her positioning, her diapers—everything—at all times.
For the first 2 years, my husband and I did most of it ourselves. We had one of her NICU nurses come by once a month for a couple of hours so we could grab dinner or a movie, but other than that, it was just us—doing everything we could to keep her alive 24 hours a day.
Other than the few hours a month when her nurse was present, there was no time for anything other than Casey’s needs. My husband and I did not have much of a relationship at all. He had to work in order to pay our bills and keep the insurance we desperately needed, so a lot of Casey’s care needs fell to me.
During those first few years, there was no time to step back and look at the big picture—our big picture—together. Each day, we were in the trenches just doing what had to be done.
Around Casey’s second birthday, we moved to Texas and had a regular schedule where a nurse was coming once a week for 12 hours. This was the first time in 2 years that I had time to get the house clean, run my errands, and most importantly, focus on relationships beyond just being a mom.
It was during this time that I realized we had neglected our marriage. Luckily, my husband was in the trenches with me, and we both were willing to put in the work to make sure our marriage was strong.
At least once a month during the time the nurse was there, we would try to go on a date. It may be something as quick as grabbing a cup of coffee together, but whatever we could manage, we made time for us.
Over the years, we added a lot more nursing, and our daughter’s health required a lot from both us and her nurses.
We had ups and downs. Some days, Casey was doing better than normal. Other times, however, she required her nurse and us just to get through the day. Sometimes we would be between nurses—or else they would be on vacation or dealing with their own families. Finding time to work on our marriage was put on a back-burner when Casey needed us to focus on her.
There are statistics that show that couples with children that have special health care needs are more likely to divorce. It’s easy to feel like you are all alone and that your spouse is getting more breaks than you. It’s easy to become resentful and angry.
Having a good, healthy marriage takes work.
Having a strong marriage and a child with special health care needs takes even more work.
Just remember to make time to maintain your relationship whenever possible.
Check out more ideas for making time for your marriage under Self-Care on this website.
(Part 2 of this article will appear next month.)
After my daughter passed away, I also lost my own identity and purpose in life. How do you go forward from there?
To advocate for our children, we must be informed and active in the decision-making processes—from local to state to national concerns. There are tools to assist in finding helpful resources.