Saturday, February 20, 2010

Back in 2006 Rick and I were invited to attend the National Leadership Council Conference for the Cystic Fibrosis Foundation. It was one of the most amazing and inspiring things that I have ever been apart of. While at the conference we were asked to go out and speak with our State Representatives and Senators about legislation that would affect CF. Part of what we were lobbing for was the mandatory screening for all newborns to detect CF. Everyones hard work paid off because just nine months later the bill passed!
While we were at the 4 day conference there was a young couple that spoke to us about their two children who had CF. The couple spoke about their trials and tribulations in the fundraising world and how their outlook on life had been so dramatically changed after finding out that both of their children had CF. As both of them spoke you couldn't help but feel like you had known them forever.Their sheer genuineness and compassion for others was extremely moving and memorable. About a year later I received a phone call from The CF Foundation to tell me that Jena Cassalina had passed away at the age of 13. I remember thinking that there must have been some terrible accident because she was way to young to have passed away from CF. I quickly called Rick at work and his response was the same as mine. We both sat on the phone in silence and shocked. I guess when you hear life expectancy of 37 you forget it's just an average.
Margarete Cassalina, Jena's mom recently published a book about her families life with CF. The book has already won awards and received rave reviews. I just ordered my copy today and can't wait to read it! Even more exciting the book is being made into a movie that will start filming later this spring! Check out the website to find the book and you can see the A- List actors that they already enlisted for the movie.

Last week Sal and I went back to Eagle Point Elementary to talk about CF with the students to kick off their annual Penny Races fundraiser for CF. Usually Jeff (the principal) and I are the ones who do all the talking but this year Sal was the one who spoke to all of the kids. Jeff and I just sat back in amazement as we watched Sal speak to the kids in such a grown-up manner.One of the older kids asked the question, do you die from CF? Sal quickly looked over at me unsure of how to handle the question. I was prepared to answer and rattled off the life expectancy. I could see the 6Th graders trying to do the math in their heads as Sal just sat there cool as could be ready to answer the next question. The next kid asked Sal,Do you hate having CF? Jeff and I both looked at each other waiting to hear Sal's answer. I was really afraid Sal was going to say something like "no dude it sucks what are ya thinkin".Surprisingly enough Sal looked right at the boy and said, " no I don't mind having CF because I know that we are doing good things for CF and if I didn't have CF all of my family and friends wouldn't have Sal's Pals and we couldn't help cure CF". I think Jeff and I both had tears. I had never heard Sal say anything like this before. What a sacrifice this 8 year old was willing to make. The arsenal of questions continued to fire so I didn't have much time to really think about what Sal had said until later that night when I received another one of those phone calls. I couldn't help but feel like I had mislead all the kids with that average life expectancy that I had told them because the phone call was about a 19 year old that had passed away earlier in the day from CF. I was sad and angry all at the same time. These young people struggle enough with their disease and dying just shouldn't have to be something that they have to worry about. In the mist of planning for this years event this was a quick reality check about why we do what we do.I quickly remembered what Sal had told that class earlier in the day about not minding that he had CF. So our fight continues until we find a cure for this terrible disease not just for Sal but the 30,000 others like him.

My friend shared this video with me.
Eva is one of those people that even at the end of her life she is thinking of others. Her message is all about LOVE. Eva doesn't talk about material possessions or living in a big house or driving a fancy car. She talks about being loved and showing love. She goes on to talk about being blessed with tremendous family and friends. Eva is a true inspiration and we can all learn a lesson from her.

Saturday, February 6, 2010

Happy February All :)

I'm not sure who all looks into the blog but I'll introduce myself just in case. I'm Maria, Jenny's younger sister and Sal's Aunt. I get to be the guest blogger this week! I apologize if this gets crazy long but I'm supposed to say anything about CF and Sal and any thoughts I'd like to share with you all-Sal is 8 years old now and I've had that long to think about CF and Sal...and there is a lot to think about!
And the Sal's Pals charity has grown and done so very much in this time that it just amazes me.

I could literally write a book about the past eight years and how Sal and the charity and CF have affected me and my outlook on life. But there are a few things that have happened that I think are worth sharing with you today.

For those of you that don't know him Salvatore is an amazing little boy. He is adorable to say the least, and he is just the funniest little kid ever. You can tell he's related to the Jiannuzzi's because he sure can tell a story! He can be a little monster like all other 8 year old boys, but he can also be the sweetest person in the whole world. Just last weekend, I came home to Toledo and after his big sister's basketball game everyone was running around or hanging out waiting for Olivia to come out from the locker room. Sal came up and gave me a hug. I asked him if I could pick him up and he said yes ( I asked because since he's gotten a little older it is rare for him to let me do this because that would be embarrassing!). I picked him up and swung him around and then I held him like a little baby. He loved it! I just squeezed him and old would he get before I wasn't allowed to do this anymore? And I thought - thank God he still lets me do this. I didn't want to put him down because I cherish every moment I get with him. And as hard as we all work to find a cure it still scares me that he'll get sicker. It still scares me that sometime in the near future I may not be able to hold Sal like that again. So I squeezed him a little tighter and put him down, because, thank goodness, he's gained weight and he's getting heavy!!! That's a good thing for people with cystic fibrosis so that made me happy.

Another moment I would like to share with you happened on Christmas Day. Sal was riding in the car with me and my boyfriend to set up for a surprise movie for my parents and we had to make a stop along the way to pick up some forgotten items. As we pulled into the gas station on Sylvania and Talmadge we all couldn't help but notice the man standing by the road. He was about Sal's Mom's age and he looked so beaten down, so sad and depressed, holding up a cardboard sign. He was homeless. For some reason we had concluded that he might need a ride somewhere. Sal wanted us to give him a ride. He said "come on Aunt Maria, can't we just give him a ride". I explained to Sal that you can't give strangers a ride, even if they are homeless because you never know if they are really a bad person and would try to hurt you.
Sal looked back at the man and back to me and said he won't hurt us. I said I'm sorry Sal we can't give him a ride, I feel bad, but we can't. After coming back to the car I had a feeling of guilt in the pit of my stomach. Here I was picking up food and drinks so that I could spend an amazing Christmas day with the people I love most, and there was this man, alone, standing in the freezing cold and rain with no one that he loved. Sal was again trying to convince me to give him a ride. I said you know what we can do Sal, we can give him food and we can give him money, that way he can use it to get a ride somewhere. This made Sal happy and a little more content and we started making a plate of food for him from the things we were taking to the theater and Jordon and I gathered what little cash we had on us. We drove over to the man and I got out of the car. As I jogged over to this man I could see his face change from despair to gratitude. Even in the rain I could see him start to cry. I told him "Merry Christmas", trying not to cry myself. And he said "thank you, thank you." How is it that once again Sal has inspired me to help other people? This little man always finds a way into my heart to help me help others and it is absolutely amazing. Here is a little boy who has recieved so much love and support from others, strangers even. I know that Sal has been brought up well, he has manners, goes to a very good school, has God in his life, but I do not think that these are the reasons Sal wanted to help that homeless man. I think that Sal has been around so much generosity and been given so much love and support from Sal's Pals and complete strangers even, that he has been inspired to help others. I know that I am not the only one that has been inspired to help others because of the help we have recieved through Sal's Pals. Pay it forward, right?

Today I found out that two young people in Toledo lost their battle to CF. And I think that's what it is isn't it? A battle, struggling to hang on and breathe and fight this disease. And I thought like that on my long drive home from work today. 19...24? How old am I? How much longer would I have with Sal? 11 years? That is not enough. And I lost it. I just completely broke down in my car. I felt so helpless. I felt so aweful for those families. And all I could think of was I never want to feel this way again...not about Sal, not because of a disease.
And sitting here now I am remembering Jenny telling all of us at the last meeting that she and Rick had read Sal's journal. And in it he had a list of things he wanted to accomplish in order of importance in his life. And he had written:
#1. Join the ARMY
#2. Cure CF
#3. Get out of the ARMY
#4. Join the NFL
I laughed and cried when they said these things. I believe Sal's list went on but these were the most important. First, how hilarious is it that Sal wants to join and get out of the ARMY! That is so Sal. But how incredibly amazing and yet sad is it that his #2 is cure CF. I think that it is all of our hard work and determination that put that into Sal's list. I don't know what other kids with CF would put on their list but Sal did not put "try to find" a cure for CF, he put cure CF. He is already confident that we will find a cure. A very important person called me and I told him the news I had heard today and I started to cry. He listened and then he said so this has to do with your nephew? I said yes. He said you shouldn't worry like that. Worrying and negative thoughts do no good for you. They make things worse. He said if you're gonna be sad, be sad for those families, but don't be sad for Sal. He isn't in the hospital and he is doing well. Don't think negative things about him. He was right. And his words reminded me why I have two things on me each day without fail. One is my Sal's Pals Fight CF orange bracelet. The other is a tattoo of the logo I drew for Sal's Pals. I have these on me for so many reasons. First, they give me the ability to spread awareness, and they are a good at helping me do that! They give me an opportunity to talk about what they are for and what they mean to me. The next reason is that I live away from all of my family and think about them often - but I think of my nephew Sal EVERY day, and it has been that way since the moment I first found out that he had this disease. These two things constantly remind me of Sal and remind me to live my life to the fullest, and to cherish every moment of my life, because we never know when our last moment on earth will be. They remind me that for some people, every day is a struggle. For some people it is a battle just to keep on breathing. They remind me that life is a gift and should be treated as a gift. I may not have everything in the world, I may not be rich or have my dream job, but I'm healthy, I'm loved, and I have the ability to help the people that need it. It reminds me to not stay mad for stupid reasons, it reminds me that life goes on and that we should never spend too long being sad or mad because everyone deserves to be happy. So why spend it angry, or bitter? Why dwell on our mistakes and our fears and our heartbreaks and trivial things? Worrying gets you no where. So I ask that we all be strong. That we pray for those that have lost their fight to CF, but that we remain positive and optimistic for those like our little Sal, who are still at battle. Let's be as determined as Sal's little but very BIG list of goals. Let's continue to spread awareness and inspire other people to help others, and help find a cure for CF.