Saturday, May 15, 2010

Great Strides and Gratitude

I posted this on my facebook page, but definitely think it merits a re-post here for my non facebookers.

When Jackson was diagnosed with CF I thought my heart couldn't possibly know a deeper emotion than the sadness those words brought. After trying hard to process what it meant for us, I sat down to write a note to my facebook friends and family so that everyone would know what was happening. I wanted to be up front and clear and not have anyone feel like they were out of the loop, and I wanted to do it without having to personally explain it over and over. After writing the note and staring at it for hours, I was unable to come up with a title. I was determined that something positive would come out of so many tears, and hastily typed out "Hope for Jackson". I had NO IDEA the tidal wave of compassion and support that was about to hit. Not only did people rush by the dozens to support us in the Great Strides walks to raise money for the Cystic Fibrosis Foundation- either by donating, participating, or both-but kindness began to spring from places unknown. People brought us dinners. A friend I haven't seen since my high school graduation designed totes and t shirts with custom art she made from a picture of Jackson and I, and is donating all profits to the CFF. Another friend donated proceeds from her personal Scentsy candle business and is donating products to be raffled off at a benefit. Then there's the benefit, a Gospel Brunch benefitting Hope for Jackson, that our friends simply came to us and said they were going to put on. I was already overwhelmed by the outpouring of compassion. Then the emails started. I started a blog about our journey, in hopes of some day reaching other parents in our position, in hopes of educating anyone with the time and desire to read it, and in hopes of having a positive outlet for my grief. Not only did my friends and family read and respond to it, they sent it on to their friends. Soon I began getting calls, facebook messages, and emails from perfect strangers. Most of them knew someone with CF or another painful affliction themselves; others were simply touched by the story. I was suddenly sharing an unlikely camaraderie with other heartsore families. MY personal network grew exponentially and I began to see that some important work had been set in front of me. I couldn't conceive of a heart more full than mine, and yet the compassion kept flowing. A small child in my mother’s preschool class emptied their piggy bank into a Ziploc bag and brought it to school to donate for Jackson. My cousins children, some of whom I've never met, 800 miles away, signed up to walk, went door to door, received donations from their classes...the children brought in hundreds upon hundreds of dollars in donations for medical research and patient programs through the CFF. There are currently four Hope for Jackson teams for Great Strides, under the umbrella of our National Friends and Family team, with over SIXTY members walking and COUNTLESS donors. We are well over halfway to our goal of $7000 for this year's fundraiser. Fundraising has never been more critical, as there are breakthrough drugs on the horizon with the potential to allow Jackson and others like him to lead a perfectly normal life. Those who are unable to give money have given us their time, just as precious a commodity. These days I find myself wet under the eyes from gratitude at least as much as I do from fear or sadness, and that's saying a lot. I understand that there is no vocabulary to express the depth of my gratitude and humility. I wish there was a way to personally thank every person who has given their money, their time, resources, thoughts, prayers, and kind words to us. The best I can do is take what you've given and continue to fight the disease. I hope to honor not only my son, but all who have supported him, and all who suffer with him in the quest for a cure. I hope to help not only to continue fundraising for the CFF, but to meet with our legislators regarding medical research funding. One of my first coherent thoughts after hearing the doctor tell me my son has what is still considered a fatal disease was this: "THIS cannot be all there is to our life. There has to be good." I had no idea the words "Hope for Jackson" would take on a life of their own and manifest Hope the likes of which I coudn't have even imagined. If I have my way, Hope for Jackson will become a charity foundation helping less fortunate patients recieve the treatments they cannot otherwise afford. My friends, you have shown me the good in spades. All I can do is hope to live a life worthy of what you have all done for my son and our family.

The Lincoln, NE Team hope for Jackson. Just ONE of the four teams we currently have walking to cure CF.

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