Thank You Once Again & March on the Hill!

-

A couple of months ago, I received an email from Kellie Fleeman, head of the Greater Illinois Chapter of the Cystic Fibrosis Foundation (CFF), who let me know that they had received another amazing donation in honor of Alex. We have some very generous patrons out there who must love us very much because over the past few years, they have anonymously given large sums of money to the CFF in Alex’s name. Whoever you are, know that we love you and thank you from the depth of our hearts.

Kellie also asked if I’d be interested in attending the Cystic Fibrosis Foundation’s annual March on the Hill in Washington D.C. as a representative of the 16th district of Illinois. Normally, this type of event would be WAY outside my comfort zone, but strangely enough my initial reaction was an excited YES. After all, sharing knowledge of Cystic Fibrosis and the needs of the CF community is right up my alley. You might even call it my super power. 😉

So in just about 10 days, I’m channeling my inner Wonder Woman, driving to Indy, flying to DC, meeting new people affected by CF, and on March 15th, sharing my story with members of Congress—4-6 of them to be exact. I’m excited. I’m nervous. And I’m afraid I might cry. Oh well, at least maybe I’ll make an impression.

In an effort to raise CF awareness, I am going to try to share several mini-stories here over the next 10 days. Wish me luck! And bring out the tissues! 

#CFAdvocacy

Comments

Post a Comment

Popular posts from this blog

Why I started this blog

-
I was recently asked to help lead a new Mom's group at my church. In an effort to encourage other moms to join our group, we, as team leaders, decided to give "testimonials" about our lives as mom's. We were to share our testimonial at a "ladies luncheon" to which all the women of the church had been invited. I was scared. My face flushes with embarrassment just thinking about speaking in public. But I resolved to do it. And I knew immediately what story I should share. But again, I was afraid. The story I knew I should share was a difficult story for me to tell, and I wasn't sure I could share it without becoming too emotional. I didn't want to cry in front of a bunch of strangers! (Although that would've been a great testimony for my need of a mom's support group!) So I debated for a couple of days. What story should I share? The fear got to me, and I decided to share a comical story about my son...one that wouldn't make me cry. I stood...
Read more

Crazy Days Part 1: The Morning Mad Dash

-
I’m attempting to get back on the blogging track. When I started this blog, I really felt inspired to share my stories. And then the lazy days of summer turned into the busy days of fall i.e. the school year. My days go something like this: The Morning Mad Dash 6:10 AM … beep , beep , beep , beep . The dreaded alarm. Once upon a time, I popped out of bed at that sound and happily began my day. That was when my worst fear was missing the bus. Nowadays, I am the bus, and I’m happy if I get my son to school before the janitor locks the doors. For the record, we’ve only been officially tardy twice in the past year and a half. That requires signing in at the office and does NOT make my anxiety-prone son a happy camper. On those days, I felt like the worst mom ever. If only I could harness that guilt and train it to slap me in the face every time I reached for the snooze button, maybe I’d snooze less often. The goal is to be up and moving by 6:30 AM, so that we can get Alex’s treatments ...
Read more

Alex and His Diagnosis

-
When I was a little girl, I remember thinking my life was good, too good, in fact. Nothing terrible happened to me. I enjoyed a fun childhood, and with the exception of some typical teen-aged confidence issues, I cruised into young adulthood carefree and happy. I always felt that God was preparing me for what was to come. And as crazy as this sounds, even as a 10 year old, I knew my trials in life would come later. ***** When the nurses placed my newborn son into my arms on July 26, 2003, I cried blissful tears of joy. He was soft and smooth and sweet, and I recognized his cute little nose from the sonogram pictures. Immediately, I thought, "Who are you, what is your name?" I'm a last-minute person, and even though my husband, Steve, and I had narrowed down our name choices, I was concerned about what we should call him. Within a few minutes, Steve and I decided to name him Alexander Michael, Alex for short. It was the perfect name for our perfect little boy. Two days lat...
Read more