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!

The Dreaded RSV Hits Home

After a couple of days of high fever and obvious discomfort, Ben needed to be seen by a doctor.  We were able to get him in to see pediatrics at our hospital, but because his Tylenol had kicked in perhaps a little too well, he had no fever and was acting completely normal.  They didn't do much but tell us it was a cold and send us on our way.  He didn't sleep much at all that night.

Taking a nap the only way he could at the beginning of this illness.

The next day he woke up with a fever over 102--higher than any fever our kids have ever had.  He was whiny and miserable and obviously sick.  When I got home from work that day, he was still in pretty rough shape, so I knew we had to take him in or I'd never be able to relax.

As soon as we got to the ER, the triage nurse came out and made an announcement that it was shift change and thanking everyone for their patience.  He said he knew many of them had already been there for 3-4 hours.  I wanted to leave right then.  The place was packed with people who were obviously ill or hurting, and I couldn't help but wonder if I was overreacting.  Turns out, I wasn't.

Despite having taken Tylenol two hours before we arrived in triage, Ben's temp was still 102.  They gave him more fever-reducing medication and took us back much quicker than three hours.  All of the medical personnel we saw were knowledgable about CF (I know that seems obvious, but you'd be surprised!), and not once did someone act as though I was just a paranoid mother.  They kept a close eye on his temp, did a respiratory panel nasal swab to check for viruses, and requested a chest x-ray.

There was some debate about whether or not the x-ray showed anything, so we were there for quite some time while radiology and ER talked with peds to decide how to proceed (we wouldn't get swab results for a couple of days).  Finally, they sent us home with just-in-case antibiotics and instructions to call our CF clinic to review everything and advise on our next steps.

I called our CF nurse the next morning.  Since they're at the same hospital, she was able to look up the swab results and the x-ray and have the pulmonologist look at the films.

The bad news:  The panel came back positive for RSV, and the radiologist was right that there was a small density on the middle lobe of Ben's right lung.

The good news:  Clinic didn't want to admit him, since they said they would just be doing what we would be doing at home (increase vest treatments to 4x/day with 2 sessions of manual CPT--chest physiotherapy--in between, and give the amoxicillin as a safety precaution since Ben has cultured staph in the past).

RSV is rough on almost all small children, but it is particualry dangerous for kids with CF, asthma, and other chronic lung diseases.  (I recently spoke with a fellow CF mom whose little one is on day 11 of a hospital stay including oxygen because of this virus!)  We are very fortunate things weren't worse.

Ben has been fever-free and sleeping through the night again ever since our ER visit.  He is drinking fluids well again and acting quite like his old self.  Extra treatments keep us chained to the house, but if we can get our baby through RSV without permanent lung damage and get back to baseline, then it is worth every second!

Once the fever broke, he felt much better.

With a smile like this, we know he'll be back in no time.  We're not going to let a little RSV get us down!

When your kid won't eat much and a healthy weight is critical, a can of olives is a perfectly reasonable lunch request.