Dear Mr. Sparks,
Did you know that the divorce rate for couples who have lost a child is twice the rate as other couples? And the divorce rate is also higher for those who have had a medically fragile child?
I told you a bit about my first marriage when I shared my story. I married my high school sweetheart right after graduation, got pregnant with Shane before college and we were relocated to another state overnight when our son was life-flighted to a CDH hospital. We were young, had no money, didn't know a soul in Durham and no idea what would happen from one hour to the next.
In those 10 months that Shane was in the hospital, I went from a shy girl to a ferocious mama bear not afraid to tell anyone anything if it meant protecting my son. My life was my son 24 hours a day, 7 days a week and every hospitalization, medical issue, therapy and research article that involved. CDH and my son were all I knew.
My ex-husband had a "life" still. He went back to VA to work during the week, surrounded by family and friends. He had a "normal job" to escape to for 8 hours a day. Not to downplay at all how CDH affected him but he got breaks from CDH, if that makes sense.
Let me be clear, he was an amazing dad. I truly could not have asked for a better father for Shane because he handled the medical issues like a champ and worked hard to take care of us so that I could take care of our son. He loved his little boy and Shane worshiped his dad. We were the 3 musketeers, at least in my mind.
But when you spend so much time apart and life-changing circumstances happen, you change. You have to. You have to grow up. The innocent security that "awful things happen to other people" is gone. You grieve the loss of "normal". You adjust. You create new dreams. You "accept it, suck it up and move on".
When you lose your child, that is magnified times 10000000.
Men and women are different and think differently, naturally. In our case, he had a hard time not being able to protect me and Shane and I had a hard time not being able to save Shane. We grieved differently. We didn't grieve together, we didn't talk to each other out of fear of upsetting each other and we each ran away from the pain in different ways.
2 years after our son died, the marriage was over, whether I was ready for that or not. In all honesty, it was over long before that.
Unfortunately, that is very, very common in situations like ours. Parents try to patch things up and fill the void of a family member missing. We go on trying to rebuild a life but it's not the same. Some couples can build a new life together, some couples can't.
After working with families for 20 years, I have heard it all I think (knock on wood there's nothing worse than what I've heard already). I've heard a hundred stories mostly of the men stuffing their emotions in until they crack a couple years down the road. I've heard stories of men who walk out before the baby is even born because they can't face any of it. I've heard stories of the moms running away too. I've heard lots of stories about the siblings having a hard time coping with separation from parents while their little brother or sister is in the hospital and stories about how these amazing kids have to face death far too early in life. Post Traumatic Stress Disorder is almost a given for every member of the family after dealing with CDH.
My advice to CDH parents is to TALK! Talk together, go down the path together. Don't avoid the hard conversations or emotions. Let each other grieve, whether their child lived or died. See a therapist if needed. Don't try to be too strong. Don't be martyrs. If both parents want to stay together and do whatever it takes, they will stay together. Their marriage can survive CDH.
My point behind this letter is that CDH is not just a medical condition that affects the babies. It's not something that is fixed and families move on. These children are not the only ones with scars. CDH also kills marriages, it kills families. Often, it kills faith too. I am grateful that I was able to hold to my faith because it's the only reason I am still here after losing everything else.
Shane's dad and I haven't talked in a decade. The only other person in the world who understands what life with Shane was like and life after losing him... is as gone to me as Shane is now. That was his choice, not mine. I grieved for my son, then I grieved for my marriage. Then I grieved for myself. CDH did that.
There were years that I spent wondering "what if" Shane had
been healthy... how differently life would've been, how tall he would be
now and who would he look most like? How many other kids would we have
had, would we still live in Virginia? Would we still be married? Happy? Would I ever gone to medical
school like I had planned? "What if's" are the enemy of sanity. A grieving parent could literally drive themselves insane playing that game. I think I almost did at one point.
Now, with a new husband and 2 more sons, I am happy. But it took a long, long time to get here. I have lived 2 lives... Shane and After Shane. CDH did that too.
This is the last family photo of my "first" family. Shane had spent the summer in the hospital and my sister came to visit and took this picture at Shane's hospital bed. We were exhausted, stressed and had slept in chairs and on floors in the hospital for weeks. Shane was in pain and yet he smiled. I think that says it all.
Dawn M. Torrence Williamson
Grieving, Traumatized CDH mom