Polycystic Kidney Disease

To celebrate our one year anniversary, we’re going to work to highlight other sites around the Internet that are Doing Good. Every Tuesday at noon (central time, yo), we’re going to bring you a story of why someone else chooses to devote their time Doing Good.

You know our beginnings. Now it’s time to see theirs.

I’d like to introduce you to Julia from Support for Special Needs. Becky and I had the pleasure of meeting Julia at Type A Parent Conference in June and fell madly in love with her -- after we realized she wasn't THE MOVIE STAR Julia Roberts and realized she was A BIGGER AND BETTER STAR than Julia Roberts. She’s got an amazing site that helps find common ground among those who are raising children with special needs. But it's not our story to tell, it's hers!

In May 2010 two bloggers, Julia Roberts and Dawn Friedman (currently retired from blogging and on leave from SfSN) saw a need in the special needs community for a social network. Julia brought experience raising two kids with complex medical, mental and developmental needs and Dawn brought her editing and community building experience to the site. Together, they created a safe place for people to come and gain support and share wisdom where they can find commonalities. Even among people with disabilities and typical people there are commonalties.

The site’s statement: “It’s an all encompassing label, yet we let a diagnosis divide us among this powerful group of advocates and caregivers into categories of rare and not-so-rare diseases, genetic conditions, developmental delays and the unexplained afflictions. We have more in common than separates us and Support for Special Needs is the community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know. Join us as learn how to advocate as one group and learn from each other about how to help our kids and ourselves.”

Support for Special Needs is a place to support and be supported. There are groups by state and many by disability although the most popular groups are ones that encompass a larger issue parents and caregivers of special needs children face; IEP discussions, occupational/speech/physical therapies, anxiety, or anything goes, as one member started. A private non-searchable group Room for Rants (request and approval only) is a safe, non-judgemental place where members can rant about anything. Currently posts 3 days a week go live from anything to book reviews (related to special needs), informational, essays and community news. Professionals and foundations are also welcome to join and start their own group to promote their business, to act as a meeting spot for their clients/families/employees (private or public). If members don’t see a group they’re looking for, they are encouraged to start one.

Julia Roberts is active on Twitter @juliaroberts1 and @supportSN and recently pitched, planned and moderated BlogHer’s first-ever Special Needs Mini-Con. Citing high marks from the mini-con, discussions are taking place for an event next year at BlogHer. Julia and Dawn’s vision was to bring people together on-line but also in real life; and hosted one in March in Atlanta, GA with plans to expand in the future. Support for Special Needs is the only one of its kind, and has been recognized by Parents.com, Online Universities, About.com/specialneeds, and SheKnows.com as being a top online special needs community.

Join them, where people have #moreincommon.

When I heard the words, “With kids like these you have to take them home and love them as long as you have them,” spoken by our pediatrician in 2001, I couldn’t believe my ears. When I looked at my husband as my eyes were filling with tears in the small exam room, he’d already started crying.

Two days earlier as I was packing to go home from the hospital with our new daughter, a doctor called to tell me that my beautiful, big-eyed, much wanted and loved girl named Quinnlin would need a kidney transplant to survive. The doctor also told me to find a nephrologist.

“A what?” I asked.

“A kidney doctor” she told me, which makes me laugh a little today because now we have several that we call our own.

Three months later we found out Gage, our then-three year old son’s body held a secret all along; he had the disease, as well. Autosomal Recessive Polycystic Kidney Disease, a rare form of PKD referred to as ARPKD, known only to occur in 1:20,000 children, two of which were mine.

Looking back I can see how far I’ve come from those first sad months (a time I refer to as “The Fog”) when I was learning how to cope with a new kind of motherhood, couplehood and womanhood. I’d married my beloved, never considering that one day we would see our (maybe) kids through medical interventions, trauma, research studies, dialysis, kidney transplants, mental health challenges and the always-present special education intervention. When I think about those first several months, I’m sad for that mom, even though I’ve moved on in a positive way through advocacy and activism.

I want to look back at that mother who cradled her sick baby while nursing, looked down at her face, cried out of sadness, and tell her that it will be hard. There will be days of great fear, days she’ll feel like giving up. I want to tell her that the time between her bouts of crying and sadness will lengthen and she’ll go many days, months even, without crying about her sick kids. I want to tell her that through it all her family and friends will support them and love them and will have enough faith, even when she doesn’t. I want to tell her that her marriage will remain strong and that she and her beloved will have humor in their life again, that they will laugh.

I want to tell her that the people 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.