When Quinn was about 6 months old, 3 years ago this month, I was matched up with a pregnant woman named Kristen in the 20-something week of her pregnancy. She had learned that her first baby with husband Keith, had ARPKD and things didn’t look good. We had connected through the PKD Foundation because she was looking for information and support. Seeing as how ARPKD is so rare, support with actual parents of kids who have it is a bit tough to find. One has to search for it.

Kristen searched. And we began conversing on email. Mostly about her appointments and how the pregnancy was going, how the baby was doing. The doctors didn’t give her baby much chance for survival, as the kidneys were very affected by the cysts. The cysts weren’t allowing any kidney function, therefore there was little amniotic fluid and the baby’s lungs were in danger. There was a slim chance with medical intervention that baby Helen, named for her great-grandmother, would survive. Kristen and Keith never lost hope. And when she was born on May 24, 2002 they held her, sang to her, and talked to her. People visited to welcome her. For 34 precious hours they hoped. Helen died while her parents held her and their hearts were broken.

Helen’s parents had no idea what an impact she would make on so many people. They donated her kidney tissue to further ARPKD research that will help future ARPKD children. They didn’t know that the love and support of families and friends would help them through their sorrow. That those same people would help raise thousands of dollars for PKD research at an annual picnic honoring their first born. Helen’s mom and dad didn’t know what kind of impact Helen would have on me either.

After the private memorial service for Helen, much to my surprise, Kristen kept in contact with me. I had thought that our correspondence would end, thinking that it would prove too difficult for Kristen to be friends with someone raising two children with ARPKD while mourning her sweet baby. Remarkably Kristen was interested in Gage and Quinn and how they were doing.  Among other things, we conversed about the difficult time of mourning their loss. She told me about making it through the first Father’s Day, about the garden Keith had started in Helen’s memory, about the grief they were working through as a couple, and about how she was coping personally.

A magical thing happened during late night email writings about grief and God, packages for Gage and Quinn and occasional phone calls. Kristen and I became friends. She was interested in every test, appointment and med change. She, better than most people I know, understood the fragileness and uncertainty of ARPKD. She encouraged me to be honest about how I was feeling, and in doing so, helped me face my fears about losing my children. When our family’s challenges seemed more than I could handle, I often thought about Kristen and how she would have been glad, even thankful, to be taking care of Helen’s needs had she lived with ARPKD. I became more grateful and appreciative of the many gifts I have. I was witness to Kristen’s faith, strength and resilience and I learned from her. I’m inspired to be a better parent, a better advocate for the kids and a better volunteer to help raise awareness and funds for ARPKD research. All because of Helen.

Last March marked a happy occasion with the birth of Kristen and Keith’s second child, Josie (Happy Birthday Josie!). What a beautiful baby, just like her sister. Josie is a bubbly, big cheek smiling, full-of-personality, playful girl. She is the center of her family’s world. And the world is a better place with her in it. 

Helen, in her amazing, short life taught two women whose paths would have never crossed, that lives intersect because of chance, but are intertwined because of love. Josie, in her 1^st amazing year, has taught two women to embrace normalcy when it occurs.

Kristen, thank you for the commitment you have made to our friendship. You have no idea what it has meant to me to have you in my life.

Helen and Josie. You lovely sisters. Thank you for your beautiful, teaching lives.