Fundraising: Part 1.

When we found out that Nico and Tommy had CF, the last thing on my mind was fundraising. I didn't know how I was going to manage two boys with a chronic illness and as much as I wanted a cure, it seemed to be a daunting task. When Tommy ended up in the hospital at two months old, and I saw what the disease does to kids, I couldn't sit back and do nothing. We started out doing the Great Strides walk in Schaumburg that they have every May. We sent out letters to recruit walkers to raise money. If they couldn't walk, they usually sent a donation. After the walk, we rented out a clubhouse and had a big party that Lou Malnati's catered. The first year, we raised almost $40,000. It felt like a million dollars but the reality was, you don't give the CF Foundation the check and get a cure in return but it still felt good. The next few years, interest waned and we ended up raising less and less. Even when it was $20,000, it still felt like I failed since it wasn't as much as the year before.

We did a few bar events and they were always successful and if my kids didn't battle the disease, probably fun but since they do, I always had a hard time going. It was hard to look around and see people having a blast knowing the reason we were there. Inevitably, I'd be introduced to someone as "the mom of the kids that have it." It has taken me years of therapy and a lot of faith to accept that it is what it is and let it roll off my shoulders.

One year we were doing the walk and someone walked by with a shirt that had a picture of a girl and said, "Walking in memory of..." Nico asked me what that meant and I didn't know what to say. I think I said, it means that they are walking for that girl and left it at that. It hit me like a ton of bricks that people are still dying from a disease that my kids battle. The next year, a women walked up to me and asked if the boys were my kids. She went on to cry for about a half hour explaining that her daughter had just died from CF that winter. I just sat there listening to her and then hugging her when she cried but inside my head I was screaming, "NOT MY KIDS! NOT GOING TO HAPPEN." I was done doing the walk after that and haven't been back since.

We graduated from the walk to a luncheon and called it "All I Want For Christmas is a Cure". It was uplifting, cozy but still really hard. It was hard, at first, to put our lives out there and ask for help. Obviously I have gotten over the putting our lives out there but the asking for help is still an issue...asking for money a bigger one. One of the saddest things for me was when Nico was given a check to give the head of the CF Foundation that put us over the $100,000  mark and he started jumping up and down excited. He was yelling, "Did we do it? Did we get the cure? Do we have enough money to get the cure?" The poor kid thought that the cure was out there and that we just couldn't afford it.

Tomorrow: Part 2 of All I Want For Christmas is a Cure.