When I heard the words, “With kids like these you have to take them home and love them as long as you have them” spoken by our pediatrician in 2001, I couldn’t believe my ears. When I looked at my husband as my eyes were filling with tears in the small exam room he’d already started crying.
Two days earlier as I was packing to go home from the hospital with our new daughter, a doctor called to tell me that my beautiful, big-eyed, much wanted and loved girl named Quinnlin would need a kidney transplant to survive. The doctor also told me to find a nephrologist, “A what?” I said. “A kidney doctor” she told me, which makes me laugh a little today because now we have several that we call our own. Three months later we found out Gage, our then three year old son’s body held a secret all along; he had the disease as well. Autosomal Recessive Polycystic Kidney Disease, a rare form of PKD referred to as ARPKD, known only to 1:20,000 children, two of which were mine.
Looking back I can see how far I’ve come from those first sad months (a time I refer to as “The Fog”) when I was learning how to cope with a new kind of motherhood, couplehood and womanhood. I’d married my beloved never considering that one day we see our (maybe) kids through medical interventions, trauma, research studies, dialysis, kidney transplants, mental health challenges and the always present special education intervention. When I think about those first several months, I’m sad for that mom, even though I’ve moved on in a positive way through advocacy and activism.
I want to look back at that mother who cradled her sick baby while she nursed her, looked down at her face, cried out of sadness and tell her that it will be hard. There will be days of great fear. Days she’ll feel like giving up. I want to tell her that the time between her bouts of crying and sadness will lengthen and she’ll go many days, months even, without crying about her sick kids. I want to tell her that through it all her family and friends will support them and love them and will have enough faith when she doesn’t. I want to tell her that her marriage will remain strong and that her and her beloved will have humor in their life again. That they will laugh. I want to tell her that the people she will meet along the way because of PKD will make her a better person; a stronger person. I want to tell her that no matter what, she’ll never give up and on many days, in fact more than not, she’ll even be happy.
Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special Needs.com. She writes for PKD Progress Magazine, Parenting Children with Special Needs Magazine, She Posts and serves on the Board of the PKD Foundation and the Parent Advisory Council for Children's Healthcare of Atlanta.