Sunday, May 20, 2012

An ARPKD Family Reunion

Some experiences in life are so unique, so filled with emotion and challenges beyond the grasp of the average person, that when you meet another human being who has shared those experiences, you feel instantly like family. Indeed, without a word spoken, this person understands more of you than some of your own family members. There is little need for introduction or explanation, you share your stories freely because you can tell there is understanding. There is encouragement just from being together--you are not alone.

Yesterday Matt and I packed up our five kids and drove four hours for a "family" reunion. It was the 2012 ARPKD/CHF Midwest Family Gathering. We had never personally met most of the people there before--some I recognized from online forums--but it didn't take long to make friends. Eight families from the Midwest, all affected by ARPKD/CHF (the kidney/liver disease that Naomi and Emma have) met at a county park to share hot dogs, games, face painting, information, and encouragement.

Seven children living with ARPKD/CHF (there was also one affected adult present) ran and played with the other kids, and except for some rounder tummies and one feeding tube, you would never have known that this was a gathering of families battling serious chronic disease. You wouldn't have known that two girls present had received kidney transplants, that one father there had donated a kidney for his daughter, or that most of the children were dependant on daily medications to counteract high blood pressure, anemia, electrolyte imbalances, and a host of other issues inherent to kidney failure and liver fibrosis. 
The kids had their faces painted, caught butterflies, tossed bean bags, explored a nature center, and let balloons sail into a picture-perfect sky. Although they knew we were there to meet other kids with kidney disease, I don't think they thought that they met anyone special, just other normal kids, like themselves, and that is exactly what I was hoping they'd feel.
The adults listened to each other's trials and triumphs, compared doctors and hospitals, and asked each other's advice on nutrition, medication, dialysis, surgical procedures, infections, emergency care, and organ transplant procedures. I learned more about the challenges my daughters face in one afternoon than I had in a year of doctors visits, because, as with most rare diseases, the families living with the disease know more than many of the doctors caring for them. But even better, I saw with my eyes two little girls thriving post kidney transplant and one adult thriving post liver transplant, and I heard weary moms and dads laughing even as they shared their challenges. In this fertile soil, our fragile roots sank a little deeper and drank of the nutrients that nourish hope. Today, in my heart, hope is in full bloom.


  1. I always love reading your posts. Even though I know little about the disease, I know some of the trials of having kids that doctors know little about through my sister. I know fewer and fewer people blog consistently and comments are few and far between at times so I just wanted to drop in to encourage you to keep blogging and that I'm reading :)

  2. Thanks Annie, I appreciate it. I get more feedback on Facebook because I link my blogposts there and most people find it easier to leave comments there. I wish blogger didn't make it so difficult for the average person to comment. It is nice to get comments on the blog itself though! I'm so glad you enjoy reading.