We all just got back from the PKD Foundation’s Annual Conference in Southern California.

It was wonderful and scary and informative and great. All rolled into one. I arrived on Wednesday to attend coordinator training (for the Atlanta and ARPKD Chapters) for two days, and then had a dinner meeting for the Chapter Advisory Committee (my first). The kids and Julian arrived in the middle of it all and then the conference educational meetings started on Friday afternoon and lasted until Sunday. I spoke to a large crowed and shared our story about living with ARPKD. Now that was scary.

The attendance for the conference was just over 400, with fewer than 20 people signed up for ARPKD sessions. The sessions included basics on ARPKD/research, nutrition, dialysis, transplant, and the emotional aspects of raising a chronically ill child (or two as in our case). It’s impossible for me to express how overwhelming it is to be one place where these specialists help us information-hungry parents. Not to mention the bonus of having a chance to meet and converse with other ARPKD parents. And feel like we are normal. In a chronic illness sort of way, if you will.

I wrote about the conference last year in this post. I neglected to properly thank the PKD Foundation for its dedication and commitment to ARPKD families. We are a small lot, but they continue to support our goals to help PKD as a whole and they welcome us with open arms. We can’t be an easy group to deal with. We’re constantly asking for more…more programs, more support, more information. And they listen. And some of us are committed to helping the Foundation reach out to more families. It would be hard for me to imagine our road without the benefit of these meetings and this information.

The rare ARPKD diagnosis is pretty isolating – what with no two cases exactly alike. Just when you think you are alone, a source of strength finds you and pulls you through. It might be the staff of an organization that is dedicated to looking for a cure, or a couple of doctors (wonderful and brilliant) who greet you with hugs and offer hope. Or it’s the doctor that educates you about the rarer still liver involvement, the doctor who makes dialysis for your young children sound normal and doable, or the doctor that is handling a study that is valuable to the ARPKD community. It could be the nutritionist who sees your children eating pizza loaded with kidney failure no-nos and not only doesn’t flinch at the sight, but smiles at your children’s joy. Or it’s the mother that listens and truly understands what you are going through, and she laughs at your not-in-such-good-health-taste-jokes, and you think, even if you didn’t have sick kids, you’d be friends. (Thanks K for everything)

Not one of us that are affected by ARPKD is in exactly the same boat, but is sure feels warm and fuzzy to know there is a life preserver when you need it.

When I was newly engaged and married and we were dreaming of a life with kids I thought I would make one heck of a PTA Mom.

I thought I’d be able to spend hours helping the school out with everything from the classroom to the media center (Library for those who haven’t been corrected by a teacher in this or the last decade). I’d work a little bit from home freelancing and spend time at the school, and I’d be available for the kids after school.

It didn’t quite work out that way.

I’ve had to pick and choose my volunteer efforts.

Instead of helping at every event at Gage and Quinn schools like I thought I would, I am working with the PKD Foundation to help make advances in research and public awareness. It’s not realistic to think that I’d be able to care for the special needs of Gage and Quinn AND do everything I want to at their schools AND work AND do the regular things that make us feel like a normal (whatever that is) family AND help the PKD Foundation.

I’ve come to terms with only being able to spread myself so thin. So…I’ll have to let the other parents who had the same dreams of being PTA parents take care of the things I had hoped to.

It’s sad to let go of some dreams and take hold of others when one is forced to. But one day you have to wake up and realize that it is what it is. It’s best to grab on to the new dream and go with it – wherever it leads you.

So in a few weeks I’m headed out to spend almost a week at the annual PKD Conference (my 4^th). I’ll spend a couple of days in Chapter Coordinator Training. Then I’ll attend sessions about the disease – everything from dialysis and transplants to the emotional effects and nutrition (hours of discussions of our future X 2). I’ll also attend a special session for Chapter Advisors (I’ve been newly elected to the group). We’ll get to be among other families faced with the same challenges we are and it will be the highlight of the conference – to feel normal in a group of about 20 families or so. And just to keep things interesting in my life I’ll speak at one of the sessions – “Living with PKD” – since I don’t really consider myself a public speaker – that should be fun.

No. I wouldn’t say I dreamt about a week like that when my beloved and I discussed raising a family together. But I should make sure, during that week especially – I’m mindful of the fact that PKD has brought many amazing things into my life. Trust me, it’s easy to forget sitting in those sessions.

Maybe on my name tag that identifies me as an ARPKD parent, a PKD Foundation volunteer & CAC member, and a speaker I should add: “Slap me if I forget about the amazing things that are in my life because of ARPKD.” Yep. That should do it.