Monday, November 17, 2008

Sal's Letter

I have often wondered how Sal feels about all of the fundraising that we do. Fundraising is all he has ever known. Since he was 18-months-old he has watched others around him work for Sals Pals. Don't get me wrong we do not eat, breath and sleep fundraisers although some weeks it does feel that way. Our family works and plays like anyone else.

Two years ago we attended a fundraiser and I got up in front of the audience with Sal to tell our CF story. Sal had never actually gone up on stage with me before. As I started to explain my connection with CF to the audience; before I could even introduce him, Sal was proudly waiving his hand up in the air exclaiming, "Hi I'm Sal, I am the one who has CF." So now that we have established to the chuckling crowd who Sal is, I continued on with my speech. I practiced this speech a hundred times but never had Sal been at my side. As Sal looked up at me, listening so intently, my heart just sank. Here I was standing up on stage pleading with these people about why we desperately need money for CF. For the first time I could feel it - I knew that Sal knew why it was so important to raise money. As I was trying to finish, tears streamed down my face. Out of the corner of my eye I could see tears running down Sals face too. He very gently grabbed my hand so I could finish. After the speech I knelt down beside him and hugged him. When we stood up our audience was on their feet. I think the audience felt the impact of what they had just witnessed. On the car ride home that night I asked Sal what he thought of my speech. He quickly responded, "I think you really need me up there mom." His smile was contagious and Rick and I couldn't help but laugh.

When Rick and I decided that we wanted to raise money for CF, we did it because we knew that if anything ever happened to Sal and we did not try and do everyhting in our power to help him, we knew we could never forgive ourselves. Sal is energetic and happy. When I look at Sal I am constantly reminded of how precious life truly is and why it is so important that we make a difference for all those living with CF. This year after the wine tasting Sal wrote this letter. I wanted to share it because it's Sal's point of view. Reading his words about CF make all of those sleepless nights we have getting things ready for events all worth it. "Dollars buy science and science buys life for those afflicted with cystic fibrosis." He also drew the B.P. gas truck. B.P. has been one of our largest corporate sponsors over the years, so I guess Sal thinks he can drive one!

Wednesday, November 12, 2008

Meet Sal

Flu Shot

Last week we went into Cleveland for Sal's CF appointment. Generally our appointments are pretty boring. In this instance boring is always good because it means he is healthy. Sal weighed in at 59.6 pounds at this visit. Sal and I have had a bet going for a few months- I promised him once he weighed 60 pounds, he could pick out any restaurant for dinner. After the appointment we rounded up and took the fam to Olive Garden. Sal was so excited because we let him order off the adult menu. Our little seafood lover was in heaven with his seafood pasta! Our day would not have been complete without a little drama though... While we were at our appointment we thought it would be a good idea to get Sal his flu shot. Pretty routine-you would think, but we forgot to tell one person about our plans- Sal. He totally freaked out. Sal has always been great about doing whatever the doctor asks him and takes his meds like a champ. Whenever he needs blood work drawn, shots, or any type of invasive procedure we have not had a problem as long as we explain exactly what it is that he has to have done. You would have thought in the 2 hour drive to the appointment I would have remembered to tell him about the flu shot, but for whatever reason I forgot and he completely freaked out. We tried to rationalize with him why he needed to get the flu shot and he was fine with the rationale, but was just not going to get it that day. He wanted to go to his pediatrician the following week. After much discussion, we got nowhere; his mind was made up, he was just going to get it later. We even tried bribing him with Dave and Busters. When that didn't sway his mind, we knew his mind was made up. He tried to rationalize with us that he wouldn't catch the flu before next week. 20 minutes later we were still having the same discussion with our 7 year old. As much as it broke my heart that I forgot to remind him and caused him such anguish, I couldn't risk taking him to the pediatrician and exposing him to other patients there for sick visits. With Rick standing on one side and me on the other, we got the dreaded flu shot. Sal kind of stood there for a second, a little shocked that it was all over-and even more shocked I think that it wasn't that bad. But worse yet, he felt embarrassed of how he had acted in front of everyone. When he came out of his room a girl that was in the room next door, who couldn't have been more than 4-years-old, held up her arm in Sal's direction hoping to ease him and show him somebody was going through the same thing, she had an IV in. I'm sure the little girl wanted to make sure Sal was OK after the way that he had carried on. I think that's when Sal realized the flu shot wasn't so bad because he remembered when he had an IV last year. Funny how kids relate to things.
Well everyone here is healthy and we all have our flu shots. If anyone is nervous about getting one I'm sure Sal could talk you through!

Tuesday, November 4, 2008

New Blog Spot

After much discussion, we have decided to post a blog spot so we can keep everyone informed about Sal's Pals. Sal's Pals was created by family and friends in 2001 for a very special little guy named Sal. Sal was diagnosed with a genetic disease called cystic fibrosis at birth. Currently, there is no cure for CF and the life expectancy is 37 years. My husband Rick and I were terrified for our son's future and decided that we needed to find a way to help. We recruited family and friends to help us raise money so that we could give back to an organization that was helping our family, the Cystic Fibrosis Foundation. We decided to hold an annual fundraising dinner with 100% of the proceeds going to the foundation. Our committee got everything from auction items to the venue donated, keeping our costs at just a few hundred dollars! That first year we raised $32,000 and had a sell-out crowd of 350 people. Over the past six years our event has grown to 500 guests, pushing the half million dollar mark! Aside from the dollars that we are able to raise there is another component that I feel keeps bringing people back to our events, when you attend the event, that is when you will truly understand how magical it is. For me when I have others who are giving up time from their own families to help mine it is an unexplainable feeling. We are so fortunate to have such passionate volunteers and I think that is were it becomes magical for me. When I look around the room at the sea of people in attendance it stops me in my tracks to be in the company of so many generous people. Of course when most people meet Sal he is lighting up the room and they can't help but love him!
Sal's Pals hosts several other events throughout the year including; a wine tasting and several golf outings.
This new blog site will be able to keep people informed of upcoming events, as well as other events going on in the area. We will also be update the blog on Sal's happenings and how he is doing. With Sal now in second grade I think he can even update himself!