Friday, September 11, 2009

Missing the walk

Normally, at this time of year, I'd be timidly asking folks to donate to the PKD walk, and I'd be packing up my kids and heading down to Virginia Beach or wherever to participate in the Tidewater PKD Walk.

We're skipping it this year.

The Tidewater Walk got canceled, (I think nobody was willing to be in charge, and I wholeheartedly put myself in that category) which means that I would have to go to DC to participate in the walk. That's all fine and good, and DC probably has a kickin' walk going on, but that's quite a drive for me and my kids. The DC walk is also tomorrow morning. I have other responsibilities on Saturday night I can not ignore, and it would have meant a crazed weekend of driving.

So, like I said, we're skipping it.

I feel guilt.

The PKD Foundation is full of folks who are doing their best to help people like me. They are working with legislators, funding the research I'm a part of, and dedicated to getting as much information as possible about this disease out to the general public and to primary care providers. Sometimes I feel like I owe them a lot. Okay, I DO owe them a lot. They are an anchor in this crazy world of chronic illness.

But I really didn't feel like driving my kids on a 5 hour round trip journey.

Does that make me ungrateful?

I got a call from somebody from the PKD Foundation not long ago, asking me specifically if I could head up the walk in my area, or if I was willing to take on a more administrative role in the Tidewater chapter. I had to be honest and tell her no. All kinds of no. Adminstrative duties and fundraising aren't my thing. I know my limitations, and I know it would drive me crazy trying to manage all of this stuff. And I have little kids who are giving me a run for my money as it is, and I have to think of their needs first.

Maybe I'm using their needs as an excuse not to be involved. It's possible. But sometimes I feel like PKD invades so much of our lives already--my daily meds, my trips to Boston, my trips to my local nephrologist (wow, that's a weird phrase), my dietary restrictions (which I don't follow nearly as much as I should, but they are there). I feel like if I open the door to the PKD Foundation right now, we would all drown in a sea of constant talk about kidneys. And my kids deserve more than that, don't they? Can't they at least have the illusion of having a normal mom?

That's my thinking anyway, and that's where I am right now. Which is to say, that's why I'm not at the walk.

I'm not closing the door on involvement with the PKD Foundation. I have only awesome things to say about my interactions with people over there, and they are doing fine work. I just think I need a little while before I can be a part of it. And this time around, the walk just didn't work out for us.

So I wish everybody a happy PKD walk weekend. And don't worry--my guilt about missing it will fester enough that I'll be sure to make it next year. So you can look for my timid plea for cash then, too.

6 comments:

Becky said...

NO...NO...NO!!! No guilt! I'm totally on your side. "To everything there is a season". Just keep repeating that. :) xoxo

Sariah said...

Here's a great post (my cousin's) about saying no: http://thepatienceofjod.blogspot.com/2009/09/nao-niet-nej-nein-no.html

Good for you!

Any chance you're going to be chatting with nephrologists in Boston between Sept. 29 and Oct 4? We'll be there.

You know, we could actually chat with each other in person one of these days, eh? As much as your kidney and I are developing a very thorough relationship, I may be ready to move on to other organs (are vocal chords and ears organs? I think I'll go ask a speech pathologist. She should know.)

CoachRichie Perl said...

Hi, Heather!

With all the items on your plate, you don't need guilt!

The PKD Foundation is "supposed" to help you!

True, it depends on volunteers, but what about serving the patients instead of the otther way 'round?

Your health comes first.

Coach Richie Perl

Natalie said...

I agree with Becky! Just focus on next year and don;t be so hard on yourself!! I hope that you are feeling okay! I miss you!

swedemom said...

I'm a great believer in the "times and seasons" approach to life. This is your time and season to devote your time to your children. Perhaps when your children are older, you'll have the time and means to more fully participate in th PKD Foundation.

Laura S. said...

I just stumbled across your blog when doing a search on PKD. I think it is great you are taking care of yourself and doing what is best for you and your family.
My 12 year old daughter was just diagnosed with PKD and I can totally relate to how it can take over parts of your life.
Thanks,
Laura