Hello everyone,
I write a lot and it almost always comes easily to me. I write about diabetes, some times I spout off about politics in private emails with my friend Adam (hi Adam). Let’s be honest, if you know me or if we’ve even spent a few minutes together you know that I am chatty as a teenage girl. Topic doesn’t almost matter... I like to communicate. If boredom strikes I’ve been known to reanalyze a topic that has already been completely exhausted (right Kel ;))... Talk, write, write or talk, it doesn’t matter to me, the words just fall out, except when it comes time to write this note.
This one weighs on me.
I’m about to ask you to part with money to support Arden’s charity which I hate doing and here is why. Our daughter is chronically ill, her life is difficult and it will likely be shorter then it should be. I’m not a doctor or a researcher so I’m powerless to find a cure for her. The JDRF, however, is powerful. They fund serious research that is actually helping people today and showing significant progress for the future. Additionally, they are a force in Washington, D.C. that advocates for Arden daily with our Senators and Congresspersons. My problem is, I can’t give them enough money to make a real difference, which is why I ask all of you to pitch in. So, that’s the first reason that I hate doing this... because I wish I could do it myself and I don’t ask for help easily.
The second reason is that I grew up with very little money. I know the value of a dollar and what it means to a family, especially recently. So this feels like begging to me.
Moreover, I hate asking because I know that some of you may be thinking what I live in fear of every moment... that they aren’t ever going to cure a disease. There are cancer walks, and heart disease walks and autism walks and on and on and nothing ever happens... so why waste the money on a diabetes walk. Honestly, I understand if that is your first reaction. I know too that I’m not the only person asking you to support a cause and that there is only so much that you can do. Because I know that I'll be asking you for this donation I try very hard to support the JDRF and diabetes related issues throughout the year. I think of it as a karma bank that I make as many deposits into as I can to counter balance the funds that you part with at this time. It’s not dollars for dollars but it is effort for effort.
This year Arden has posed for pictures that are currently being used in brochures and pamphlets at her children’s hospital to educate the parents of kids with type I. We spoke with our congressman and shared what it is like to have type I and then asked him to support diabetes related bills. Arden has given an on camera interview that should appear on ABC news in Philadelphia and on Web M.D. later this year, we also just gave a print interview to a New Jersey newspaper about living with diabetes and next week she will be filming a television commercial supporting the JDRF. Additionally, we keep Arden’s Day up, running and current on the web and on Twitter. I can’t begin to tell you how many people from all over the world that I have spoken to, shared advice and support with all because of the site. The site actually helps people - Five years ago, I never would have believed it if you would have told me that I would be the person doing all of this. I hope that these efforts are enough to show my respect for your donation.
I am always so tempted to describe Arden’s Day in raw terms because part of me feels like no one could understand how oppressive having type I diabetes actually is. It’s a blessing that Arden doesn’t “look” sick but please make no mistake, she is. Perhaps your money will find a cure, maybe it will make a research breakthrough that develops a new machine to help her live, it may just pay a lobbyist to advocate for her but it definitely will fill my house with hope. You would need only to live through one of Arden’s days from dusk till dawn to know what hope is worth.
So that’s it, I wrote too much and I was probably too honest... just let me leave you with this. When we’re young we feel powerful and in control. As we age we gain perspective through our experiences, when we look back we realize that we didn’t know much. I’m told that when I get older, much older, I’ll look back on this time and have the same thought - a lot of people say that. But I don’t think that’ll happen to us because having a sick child strips away all of the pretense in your life. I don’t want anything or need anything, all of my youthful dreams seem trivial and there is nearly nothing that I have or know that I would trade for Arden’s health. I’d trade my home and live on the street, my life, my health, any of this stuff that I have. Anything I could do to stop her suffering, the stress, the ever looming sense that today is the day that something goes wrong - because something will go wrong one day. Honestly, just to see her wake up in the morning and not have to test herself, that alone would cause my heart explode with joy. As it turns out this whole thing, our lives, they are what they are largely because of the perspective that we view them from. Everyone has bad stuff but I’d wager that having a sick child trumps most of it.
I hope this note found you and your family well and I apologize for it’s tone and any sadness that you may experience after reading it. Most of you know that I only reach out once for Arden’s walk in this way and then I follow up with a few reminders as the date grows near - this year is no different. Also, anyone that would like to walk with us on October 24th is welcome, friends, family or strangers, we’d love to see all of you there! You can sign up to walk (links at the bottom) or send me an email at skca@me.com.
Tax deductible donation to the JDRF can be made through Arden’s walk or you can contact me for the address if you’d like to send a check.
I really can’t thank you all enough for your attention and support! You are all tremendous people and I’m humbled by your dedication to Arden.
My very best,
Scott
Friday, October 1, 2010 at 1:45PM 