The Blessings CF Brings (Yes, Blessings!)

Let me tell you a little secret about fundraising:  I HATE IT.  I hate taking on such a huge project in the middle of the school year when I'm already crazy busy.  I hate being afraid I'm going to miss some important detail and forget to send someone what s/he ordered--or worse, forget to say thank you to someone.  I *really* hate asking the people I love for money, which is even harder after the first year.  But more than anything, I hate that my son has a disease without a cure, a disease that the government doesn't consider important enough to fund research toward finding a cure, a disease that affects almost every part of the inside of his tiny little body.

Now let me tell you another little secret about fundraising:  I Love It.  Or rather, I love the incredible blessings that we have seen because of it.  So many people were instrumental in helping get Ben's Brigade off the ground last year, and since I'm posting this online without everyone's consent, I won't name them here, but the logo, the knife, the vinyl stickers, the hats, the student fundraisers, the donations, the walkers, the support...it's all noticed and appreciated more than we can say.

The feeling I get when I hear the email notification that means someone has joined our team, or made a donation, or asked how s/he could help--that feeling is indescribable.  There is a surge of love, gratitude, and HOPE--hope that together, maybe we really CAN help those who work so hard to find the cure.

And then there are the big surprises.

Unexpected Support
Last year, in preparation for their fundraising kickoff for the Ridgecrest walk, the AVID classes asked me to speak.  I was terrified.  I speak in front of roomfuls of teenagers all day every day, but this was different.  This was telling them about one of the hardest moments of my life.  This was sharing something that is deeply personal.  This was trying to find the balance between showing them the gravity of a CF diagnosis and my beautiful baby's regimen without exploiting him or his illness in the interest of money.  This was *trying not to cry in front of a roomful of teenagers*.  I wasn't sure how to do any of that.

But I did it.  On the day of my speech, I was shaking.  I had note cards and a PowerPoint presentation, but I stuttered and stumbled over my speech.  And...I cried.  And you know what?  It was ok.  It was more than ok.  It was wonderful.  After I had finished, and as the kids were leaving my room, two students whom I didn't know came up to me.  The girl had tears in her eyes.  She told me she was so touched by my story and said, "I want to help!"  And then she threw her arms around me and gave me a hug.

Selfless Acts
Shortly after that amazing moment, another incredible thing happened.  We were approached by an old friend who does incredible work with wood- and metalworking (swords, knives, jewelry, etc.).  He said he wanted to make a knife to auction off and donate the proceeds to our cause.  While this led to an eventful (and anonymous) bidding war that ended up being between our own fathers, it was also an incredible act of giving that we will never forget.

And this wasn't just any knife.  Our friend put so much thought and love into this project.  He chose purple heart wood because 1) purple is the color of CF awareness and 2) the Navy used to build ships out it, and he liked that connection.  He made the spacer out of antelope horn because of a personal connection that isn't mine to share.  The craftsmanship is beyond compare, and the knife is stunning in its beauty.

SEE?!  Gorgeous.

One other amazing thing came out of this knife auction:  We learned that several of our nearest and dearest, including the craftsman himself, had already been plotting to make sure that the knife ended up in our hands eventually, so that it could be passed on to Ben when he was old enough to understand.  I love the effects of fundraising.

The Kindness of Strangers
This year we are trying something different.  I can't go into detail yet, because it's a surprise, but I still have to tell this story.  I had been talking with someone I found on a neighborhood site.  He and his wife have a side business that they do from home, and we wanted to have them do some work for us so we had some fun new ways to get donations this year.

Last night he contacted me saying that he and his wife had been talking about our cause and wanted to do our project at their cost.  He added that they also wanted to throw in a free item for every five sold, meaning that they would take a loss for this project.  We have never met these people.  I didn't even tell them our story--just that we were fundraising -and they are doing something of this magnitude out of the kindness of their hearts.  I shed a lot of tears last night over this.  I was just so moved.

Just last week I was so frustrated with CF as we were coming off antibiotics *and* fighting RSV.  I was stressed after missing so much work to stay home with Ben because he had to do vest four times a day; I was scared because his X-ray showed a density on his lungs for the first time, and I didn't know if it would go away; I was sad because all of this was a reminder that CF *is* a part of our lives, that it is lurking in the background and could rear its ugly head anytime, no matter how healthy our baby has been so far.

Now our experience with CF has shown me again that beautiful things can come from serious challenges.  Ben is healthy again and back to doing his two maintenance vest treatments per day; we're back at work and back into our routine; our CF clinic is very happy with how he has healed.  And people are once again standing next to us as we fight our battle to find a cure.

I feel very blessed today.

Stay tuned to find out about the awesome Ben's Brigade items that are in the works!