“. . . and if I may ask . . . how are you and Jon after all of this?” I will never forget talking to my son’s primary care physician in the first few weeks following his diagnosis with neonatal monogenic diabetes. We had known this now-retired pediatrician for decades though our oldest is only eight years old and were proud to call him the PCP for all three of our children. The question was not out of line; it was respectfully and carefully asked—he knew us. But it just struck me as a little off-topic.
We had just spent 31 days in the hospital with our son, and he wanted to ask me about my marriage?
Knowing our pediatrician as I did, though, I was happy to share a more private glance into my marriage. What he saw, however, was a bond that had been challenged and yet strengthened throughout the grieving process following our son’s diagnosis. Surprised, he half-jokingly asked me if I had any secrets.
The perception of the mass media and even professional literature probes that parents of children who are differently-abled have a divorce rate of 70%.
Though this perception is not solidly backed by research, you could likely see why someone might not have a problem accepting the concept. Parents of children with disabilities are true warriors, however, they have an immense amount of stress added to their lives that someone with typically developing children might not. It is this type of never-ending stress that might cause an already stressed couple to break. What is it that we did that kept us bonded and not torn apart in our own grief and new roles?
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Great question. Seriously. Sometimes we do not even know, ourselves, what keeps us so tightly bonded together. But we have learned so much about our son’s type 1 diabetes and his management needs over the past three years—and along with it, about the strength of our marriage. Here are our biggest tips for couples facing a child’s diagnosis:
Have a Solid Support System
Of course, couples are their own best friends and support systems, and sometimes that may seem like everything. However, keeping a solid support system outside of each other has been critical for our marriage. Whether it is close friends or family members, we have always felt supported by those in our inner circle and that was critical at the time of our youngest son’s diagnosis. We did not even have to split up much over a 31-day hospital stay due to our support system’s help and aid. They helped watch our other two children and allowed us to stay together in the hospital to learn all we could about neonatal monogenic/type 1 diabetes.
As a grieving, extremely confused, and overwhelmed mom, having my husband there with me for a literal shoulder to cry on was invaluable. There was just nobody else who could comfort me like my husband could during that time. Nobody else could possibly understand what it was like to see your infant held down by four nurses to get yet another IV line into a tiny, 5-month-old little boy’s leg. Comfort only came from someone who saw and felt those same emotions right along with me. And those long days of just sitting in the hospital room, wondering what came next, and passing the time together really helped strengthen our bond and remind us we were in this together. Our amazing and loving support system allowed this to happen.
A solid support system still helps us to this day. When life is a little too chaotic or overwhelming, we have our family and friends who help us watch our older two to give us a chance to focus on just our child with special needs. We also have at least one family member trained in type 1 diabetes management who can, and often does, watch all three of our children together for a few hours so my husband and I can steal a quick meal together. That time without kids, to reconnect not just as parents but as husband and wife is invaluable.
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Honestly, nothing is more important than communication in any marriage, in my bold but experienced opinion. We are no different. If I were not able to look my husband in the eye and tell him he was being overly frustrating, we would never get through anything. I must be able to tell him when enough is enough and vice versa. It may lead to a squabble or short argument, but it opens that door for communication so emotions do not begin to build up. Stress and built-up emotion do not create a stable mental health situation, of that I can assure you. Keeping marital stress, due to non or miscommunication, at a minimum while learning to manage our son’s diabetes day to day has been a critical piece of our puzzle.
Learn the New Diagnosis Together
We had to make early decisions such as getting a constant glucose meter for our son to wear, picking out a pump or staying on shots of insulin, and figuring out what dosing needs our son had when it came to breastfeeding, as he was still an infant at the time of his diagnosis. All these decisions were considered and made together, with the help of our new endocrinologist. In those early, confusing days, we had each other to reflect on and bounce around ideas for how best to manage our son when we left the hospital. This grew our bond significantly as husband and wife.
Prioritize Life Together
My husband and I may not have always had the same priorities prior to diagnosis, but with type 1 diabetes now in our lives, we saw clearly, together, for the first time in a while. We now knew what almost losing our son was like and from then on, we looked at life a lot differently. We were so thankful to have our son still with us and saw the immense blessing of our older children’s good health, and that of our own.
Appreciate Each Other’s Strengths
It’s easy when you’re just the parent of three children to have resentment toward each other, for however briefly, because roles are differently weighted, such as when mom needs to breastfeed around the clock but dad has to get some sleep for work the next day. When our son was diagnosed as a type 1 diabetic, however, we grew a new appreciation for each other. I saw my husband change an infusion set for my son’s pump and cringed for the first few times but saw his brave and steady hands handling the situation that I emotionally could not yet. By the same token, my husband came home from what he thought was his own long day only to see my struggle with caring for our three children, one of whom was now a diabetic infant. His appreciation for my ability to overcome stress and try to keep our son in-range simultaneously grew immensely, so he says.
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Know You Can Handle Anything
He and I have talked about this before and it is very much the truth–living in a hospital away from our two older children for 31 days while learning to care for a diabetic infant after he almost died, there is nothing greater than that. That was the most emotionally and physically draining event of our lives as married parents and we overcame that, together. Every squabble we have now seems redundant and insignificant and usually passes that much more quickly than it might have before our life with type 1.
We are not even close to perfect, that much I can assure anyone reading this. However, we have survived what many parents have not, and we did so together. Our bond is sealed, airtight, and honest. Are we thankful type 1 diabetes came into our lives? Absolutely not. However, it has taught us some invaluable life lessons as parents, as a couple, and as individual human beings. Our marriage is not doomed to fail because we have a child with special needs, and I am here to say we will make it.