The past two weekends I have been telling our PKD story because I’ve met some new people. Last week it was Walk for PKD coordinators and this weekend it was with new board members.

I have to say…still over 7 years later it makes me sad when I think about nursing my girl in the living room a few hours after a doctor told me on the phone that my new daughter had PKD and needed a “transplant to survive” — all while I was packing to go home from the hospital with my beautiful, very much wanted and loved baby girl.

Even though I’ve moved on from that day in (what I think is) a positive way, I still think back to those first uncertain, dark days of learning our baby had an incurable, life-threatening disease and I feel sad for that mother.

I remember Julian’s face when he could tell the doctor on the phone was telling me something bad. I remember my sister crying when I repeated the words from the doctor, “polycystic kidney disease” and I remember hoping that the video we were taping couldn’t see the tears streaming down my face as I put my daughter in the car to go home. I remember sitting in the back seat with her and just repeating, “I don’t believe it. She looks so healthy.”

We left the hospital with no information. The clueless doctor didn’t do the simple blood test that would have revealed her kidney function, while reduced, was completely life sustainable. That doctor could have spared us several days of worry while we waited to see a nephrologist to confirm her kidney function.

I remember walking into my house, where my mother was waiting to greet her new granddaughter and how the instant she saw my face knew there was something wrong and instinctively rose from the chair to hug me. I remember sobbing a very deep, loud, humming cry. I remember how Quinn was cradled in my arms between our embrace when this happened. I’ll never forget when I answered the ringing phone and my friend Tina called to check on us how I could barely answer the question, “How are you?” because I was so in shock from the events of the past hour.

Over the next week as Julian and I would lock eyes, one or both of us would begin to cry. I don’t remember how many times I said, “I just don’t believe it. How could this be happening?”

On the day after we brought her home I sent out an email announcing our happiness about the joy of adding Quinnlin to our family. I told our friends and family that along with her beautiful eyes and long fingers and toes (and her 10lb body!) she also had been diagnosed with PKD and that we weren’t sure about much, but that she would need a kidney transplant.

The Saturday of that week was the first time that week I have a clear memory of us being a family of four. Gage was in the bath tub, I was holding Quinnlin and sitting on the floor and Julian was reaching over the tub to bathe Gage. That clear memory was the first in which I thought, things, they just move on…so what’s next?

Over the next couple of weeks we would learn about polycystic kidney disease and its affects. We learned that eventually our sweet baby would need a kidney transplant. We would learn that Gage could have it as well. And in fact, three months later we did. As we grappled with the fact that both of our children were diagnosed with a life-threatening disease we started to figure out what would become the new normal. And we started to learn that meant not sitting back.

Seven 1/2 years down the road I can say that our family has changed a lot from the picture we saw for us as a couple. We turned our sadness into advocacy. We turned our anger into activism. One of the best decisions I made throughout this journey was to connect with the PKD Foundation. They gave me a voice I didn’t know I had and they gave me a platform in which to speak. I’ll forever be grateful for the course our family life took as a result of the connections I’ve made. Connections that have included life long friendships and unparalleled medical care. All as a result of what transpired from the act of one family and one PKD doctor (link coming).

I want to look back at that mother who cradled her sick baby and tell her that it will be hard. There will be days of great fear and sadness. I want to tell her that through it all her family and friends will support them and love them. I want to tell her that her strong marriage will remain strong. I want to tell her that the people that 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.