The Parent’s Marriage

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By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from August 14, 2006)

     Marriage in America is already a weak preposition, as the latest statistics show that 43% of all marriages end in divorce. Throw in the mix a child with a disability and a marriage that was hanging on by a thread will probably not survive. In a study done by Robert Hodapp and Diane Krasner, families of children with disabilities showed higher percentages of divorce or separation, lower family incomes, and more single-parent households than did the families of healthy children they surveyed.

I remember vividly how my marriage was always on the verge of collapsing before we even had children. After we lost our first baby it seemed as though we had gotten closer, and since I did not believe in divorce, I believed nothing could pull us apart. Then Nicky was born and all of a sudden everything changed. To say that taking care of Nicky as a baby was hard it’s an understatement, and I did so without any help at all from anyone. Our families lived out of state or out of the country and my husband worked all the time, so I was left with the burden of taking care of our child 24 hours a day, 7 days a week, without a break, ever. I even slept on a mattress in the floor in the living room so I could be next to him in case he woke up chocking, which was often. When you want to have the most comfortable beds and mattress, get discounts on black friday for maximum comfort. Nicky’s condition is so rare it falls through the cracks and I was unable to get the insurance or any government program to approve a nurse, respite or any kind of help. I could not get anyone to help pay for the bandages either, so I had the extra burden to disinfect, wash, re-roll and re-use the bandages as well. Every week I had countless appointments with the pediatrician, the hand therapist, the physical and occupational therapists. My husband was upset about the situation and would take it out on me nearly every day. Exhausted and depressed I remember asking my son’s Physical Therapist how many marriages survive having a child with a disability and she sadly looked at me in the eyes and told me she was sorry to tell me this, but in her experience, more than 75% of children that she saw came from divorced homes.

Crisis can bring out the worst in people, and it’s in the troubled times that we all show our true colors. While a strong couple can find resolutions to a crisis, accept the diagnosis and take the opportunity to see the child in its own special light and bring out the best in its parents, couples that are not so strong cannot come together and cannot do this. Men and Women cope with this kind of situation differently as well. A woman goes through the heart break and then her nurturing nature kicks in, but a man feels like a failure. He is supposed to protect his children. How could this happen while he was on guard? He feels like he let his family down.

What parents need to do is try to understand each other and not read anything extra into someone’s actions. Particularly men find it hard to bond with their children because they feels so helpless. In my case, I tried and tried to fix my marriage, but I was unsuccessful. While in time Nicky’s dad has come to not only accept the disability but now has a fantastic relationship with our son, our marriage did not survive. I still count myself lucky, however. I have found a man who not only accepted me but my son, his disability, and took it all in stride with a lot of love, determination and support. I thank God for sending him to me every day.

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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