I’m at Walk for PKD training in Kansas City while my friends and family fend for themselves with the kids. And I’m here with some 50ish people doing the same thing – learning how to plan and execute a flawless Walk for PKD, while simultaneously raising money for research.

I do not have to come here. I’m able to host the event without coming here for training on how to do things better, smarter, faster. I would be able to raise money and have a successful event without being here.

But I need to be here. And I want to be here.

Being around the other Walk for PKD coordinators is the reason. There are some passionate people fighting PKD and being around them inspires me. They inspire me to be a better person. I want to have a BETTER event. I want to take some of their ideas and try them this year. I want to reach out more to people to help me in order to make the event grow. I want to do this in honor of Gage and Quinn. But I want to for the other people that sit in this room with me as well.

There are families represented here that have been dealing with PKD for GENERATIONS. Two, three, four generations. Grandparents, parents, aunts and uncles, siblings. Gone. Because of PKD. A disease that actually has a very good chance to be treated or cured in my lifetime. I can’t understand the pain of losing entire generations to PKD. Entire generations of people that left their families early and their loved ones who missed having their family members with them throughout life. There are other moms, like me, who took their little cherubs home as infants with the devastating news that our babies would need a transplant to survive.

It always helps me put my own struggles in perspective when I am around this many people fighting the same fight. My family and friends, while supportive (like you wouldn’t believe) and loving and most awesome, can’t understand what it is like in my world with sick kids. Yes, they have an idea. And many of them live it with us through our close ties with them and through this blog.

But they can’t understand the despair. They can’t understand how sad it can be in the fight alone facing appointment after appointment with bad news. Facing more complications than you thought you could ever handle. While going through the daily struggles of failing kidneys, educational and social deficits, financial uncertainty, fear of losing my kids, while still trying to make certain our family life is reasonably fun and fulfilling I know that the people who love us can’t understand.

They can’t know how the sorrow can creep up on you at a child’s birthday party, dinner out with friends, or in the quiet of the evening once the kids go to bed. They can’t know how sad it can be to be alone in the daily and unrelenting struggle.

That is not what it is like here. Everyone knows that helping spread the word to raise funds for the PKD Foundation is the quickest way to empowerment. It’s rewarding. It’s amazing to be part of a group that understands and is actively doing whatever they can to make a difference. For their families and for my family.

Here, among these people, I don’t feel so alone.