Coping with the Unknown

Coping with illness, either yours or a loved one's, is hard enough when you know what you are facing. But when the hardship you are fighting won't show its face and be named, it is a whole other battle. So many women have stories like this, but here is bit of mine.

It was the Tuesday before Thanksgiving 2003 when my husband and I went in for our 20wk. ultrasound with our first child. Our anticipation and excitement was burst like a balloon when we were told that there were significant issues with the baby including a diaphragmatic hernia and we should consider termination. This wasn't an option for us so we started to research other potential treatments on our own. Tragically, when our son was born at 41weeks, his problems were more severe than we had anticipated and no one was able to help him. We had him for three days and then he went to be with Jesus. But this was not the end of our battle. It was really only the beginning of the testing and endless consults to try and figure out what happened to my little boy. We got very mixed messages. "It was random." "It is genetic." "Get pregnant right away." "Never have children." What is a grieving mama supposed to do?

Due to the lack of consistent messages and the severity of my son's problems, we felt stuck. We wanted more kids but didn't know what risk we would be taking by getting pregnant again. I would describe it to people this way: If someone handed you a pair of dice and said you can roll these and you may win the jackpot but you may also die, would you roll them? Lucky for me, God took that decision out of my hands and I got pregnant again in July 2005. I lived in fear for the first 20wks., waiting for that ultrasound when we would know what our fate held. Joyfully, my now two year old son is healthy and rambunctious as the next kid. But fatefully, I now find myself pregnant again. Definitely not in my plan, but true non-the-less. And the fear is no less real now that I have one healthy child. Now 16weeks, I have a month to go until we can better know what path we are on this time.

Maybe my husband and I are carriers for a rare and fatal genetic illness that multiple rounds of genetic testing have not been able to find. And maybe it was one of those horrible random things that sometimes happen but can never be explained. No one knows, much less me. So I live my life coping with the unknown. And much like with other illnesses, known and unknown, the medical community sits baffled. I have a friend who is waiting to hear if the mysterious tingling and numbness in her toes is Lupus or anxiety or just toddler-induced-sleep-deprivation related. That is a wide array of explanations. You would think the experts would be able to narrow it down a bit for her. And maybe they will eventually. But for now she sits, coping with the symptoms and the anxiety of her unknown illness. And much like in this story, many of us find ourselves having to learn to cope on our own because the doctors and specialists have left us here. They can't help because they don't know what we are dealing with. The truly unfortunate thing about unknown illness is that even if the diagnosis and the treatment are a mystery, the symptoms are no less real and life-altering.

Coping with unknown illness brings anxiety and lots of uncertainty. Do your own research, don't be afraid to ask questions, don't necessarily accept all medical advice you are given, trust your own instincts.... but if all that leaves you right where you started, try not to get discouraged. The only way I have found to truly cope is to lean on my friends and family and trust that no matter the outcome they will be there to walk through it with me. And boy am I grateful for them this time around more than ever before.

This is a bit of my story. What is yours?

Original Chicago Moms Blog post.