I just got back from the PKD Foundation conference, where I was among my people. The people that truly, without a doubt, understand what we go through. Sure, our problems are different from child to child, but the same too. We’re faced with new territory in the treatment of the problems associated with ARPKD for our kids. We have the same fears. Some we speak of. Some we don’t.

In my ARPKD “family” I’m close to some of the mothers. We greet with warm hugs, smiles, and questions about how the kids are. Oh, no. Not the normal questions…how are they, but "how are they?" – or “how were the last labs?”…”how’s the BP?”…”how’s the liver?”– we talk about all of those things and it’s helpful to hear what others are going through. When we are listening to a speaker and there is shocking information to hear, we look at each other with understanding glances. The ones that say “that scares the crap out of me” and those looks are understood with no words.

I don’t always feel comfortable talking about our daily struggles and long term fears with our friends and families. That isn’t to say I wouldn’t be welcome to discuss it. I just don’t always want to burden the people in our everyday lives. One of the reasons I get energized being around other ARPKD moms is because every word can be said. It’s a safe place to land where every feeling is completely understood. We’re face-to-face at this conference, and it’s an experience we can’t replace with emails and phone calls.

I’m connected to several families, but in particular moms K and L and R. K’s son will get a transplant and double nephrectomy soon, R has to give shots to her son, travels across the country to see Dr. Wonderful for check ups, and has to contemplate bringing another baby into the world with the ARPKD risks, and L’s daughter has more liver and spleen problems of any of the ARPKD kids I know. I’m in awe of them. They inspire me and I learn from them. I can ask questions freely, without feeling like I’m talking too much or obsessing about the kids (which clearly I do). We don’t get sick of talking about things…normal kid things, and the more difficult things as well. No issues are trivial. Being with them, talking about ARPKD issues make me a better mom. I’m more prepared, I’m more committed to always find the right answers for Gage and Quinn and our family. And it’s always an extraordinary gift when I have a reminder to appreciate what we have today.

Some of us are working on getting a new national chapter started with the PDK Foundation – specifically for ARPKD. It won’t take on the form of a city chapter (like I’ve been doing) but the impact is far-reaching. During this process of getting it worked out, we’ve been exposed to more people at the Foundation and the Doctors and care providers that are passionate about treating and fighting ARPKD. I’m continually amazed at the amount of time, talent and service they provide to us. For example, over two days, I had the rare privilege of sitting with two doctors and a pediatric dietician in a social setting. I can’t believe they don’t want to run into hiding after seeing us, but they don’t. See, we tend to ask A LOT of questions in our ARPKD sessions and they still offer their off time to us – “why?” you ask. Maybe to stay connected to the ARPKD community in a way that isn’t usually possible, but really I think they sense we want more, more of what they have. Sometimes it’s hope, sometimes it’s a reality check, sometimes it’s an answer to a simple question. Why ever they do it, I’m most appreciative they do. I’m thankful that one day a long time ago, they decided that ARPKD would be an area they would put their efforts into. They help me feel confident and competent, that I am doing everything I can to be the best advocate for Gage and Quinn so I can help them live the best life they can have. They help me feel like we are normal. I don’t know how to say “thanks for fighting for my child’s life, long before they were born.” I’m not even sure that I can thank them in an appropriate way, other than to say they change my outlook on my small corner of the world, and that they have helped restore my faith in humanity and the good that is in people.

And, in this world, among my people, we think that is amazing and wonderful.

Julia