BEST OF November 2011 – Cause Warrior Caroline

I’m Rerunning This Blog Post as a A Best Of.  I so admire Caroline for her spirit and her relentless fight against Cystic Fibrosis.  We are Wyvern Sisters fighting for our kids’ lives and I can think of no more honorable woman to celebrate today.

If you want to help her help the world here is her fundraising page:

For the second in my official series of “Cause Warriors” I would like to introduce you to Caroline.  Caroline’s son Joey is eight and he has cystic fibrosis.  I’m going to use my interview with Caroline below to teach you a little about her cause and her fight.  I’ve often used the analogy that any parent fighting for their child’s life is like a member of the armed forces on a battlefront.  So Caroline battles cystic fibrosis with Joey like the Navy in the South Seas, and a dad fighting leukemia is like a Marine in the heat of combat, and I’m like a paratrooper in the Army.  We are all fighting different fronts in the same war, so I am honored to share this story from my sister in arms.

I also want to say that Liam and Joey have tons in common. They both have a younger sibling, they both are the same age, no one can tell their families what their life expectancy is because it changes all the time (for the better). Both have done long tours of duty in children’s hospitals, gone on unique Make-A-Wish trips,  and both are energetic kids with a lot to offer the world.  Even though they both have very different diseases, both of our boys  could face lung transplant in their futures.  It’s sometimes  a final resort for both kids with half hearts and kids with cystic fibrosis.

So, if you haven’t filled out your organ donor card or updated your driver’s license, make that a November goal! Now, heeeere’s Caroline!

“Benton Family” A family portrait taken by the CFF marketing team while we were in DC over the summer of 2010.

Amanda:   If there was one thing you wanted people to know about Cystic Fibrosis what would it be?

Caroline:  Cystic Fibrosis is not a death sentence. Even though Cystic Fibrosis is life-shortening, you can live a full and successful life with CF.  This is a new truth. If diagnosed in the 1950s, your family would be encouraged to enjoy your time together and not plan on you getting past elementary school. Now, average life expectancy is 37, but that is not an expiration date. The Cystic Fibrosis Foundation has invested millions in developing treatments, therapies and knowledge—and teams to administer it to patients—that now, life with CF is what YOU MAKE IT.

Amanda: When did you find out that your son had this disease and what did you know about it before, if anything?

Caroline: When Joey was born, we had no idea that he had a genetic illness, or that we carried the genes that gave it to him. At six weeks old, he was still at his birth weight. Our family doctor became concerned and told us that he needed to go to the local hospital. I asked him how long, and he gave me the only answer I could hear at the time, “for a couple of day.”

Looking back, I know that wasn’t the real answer. The real answer was “Until.” Until we figured out the problem and he began to gain weight or until he died.  He had an initial diagnosis of “Failure to Thrive” which is English enough for any new mom to be terrified.

We spent a week at the local hospital and then were transferred to the nearest Children’s Hospital. The next morning, he was tested for Cystic Fibrosis. This was the first time I remember hearing of this disease, and even at that moment, after eight days of hospital time with a six week old, I couldn’t keep it straight from the “alphabet soup” of disease names running through my head: CP, MS, ALS, etc.

I didn’t really even register what the nurse was saying about CF as she was testing, because every other test for a week had come back negative, why would this one be different? A few hours later, I was awakened from my nap by our new Pediatric Pulmonologist  explaining why we needed him.

Amanda:  What does being an advocate mean to you?

Caroline: The day Joey was diagnosed with CF, I made a choice to be an advocate. I don’t think I realized that was what I was becoming, but when we finally had an answer, a disease name, treatments, drugs and doctors who knew what to do, it was a RELIEF. I had to share the information with our family and friends who had been worrying and praying for weeks with us. I had to pick up the phone and tell everyone what Joey had.

I had a choice. I could be sad and upset and negative and set the tone for his life or I could share my joy and relief and positive outlook and make this the song of his life. I put a smile on my face, wiped away my tears and shared the news.

Amanda: As a parent, how do you balance your identity and help your kids do the same when facing such a huge challenge?

Caroline: We try to empower Joey to have as much say so and control over his treatments as possible. The three parties involved in all medical decisions are parents, doctors and Joey. Depending on the situation, one view may outweigh the other, but Joey is a partner in his care, at whatever level he is able.

CF is a lifelong disease that will only get harder and more demanding. It doesn’t let up. He needs to be informed, involved and engaged if there is any hope of him taking ownership of his treatments when his is a teenager and older. Otherwise, it will be a fight against the doctors and treatments in an attempt to fight the disease.

What advice would you give other parents of children with serious medical challenges?

Find the positives. Even in the most devastating illnesses and conditions, I firmly believe that there are positives to be found. Decide for yourself and your family what role the disease will take and what you need to balance it. We needed to make each day about joy and laughter and living life to the fullest.No one knows how many days or years they will have, only what we do with each. So, instead of focusing on a potential deadline, we find joy and fun in each day.

It’s also critical to our family that we are part of the solution. Just taking care of Joey is not enough. We need to work towards finding treatments and a cure for CF. We also decided that it was important to share our story. There are no off-limits questions when it comes to CF our how our family is dealing with it.

Amanda: What do you want people to know about your family?

Caroline: We don’t let CF define us and run our lives. We try to fit CF into our lives. Sometimes, CF wins, but most of the time, we make time for family and fun and normal kid things, and plan CF treatments and therapies around it. Sleepovers and birthday parties take priority over treatments. Treatments still happen, but after the joy of life comes first. If not, what are we working for? What are we living for?

Before I was a mom, I knew I could never care for a special needs child of any kind. No way, no how was I capable of that.  But after MY son was born and the doctors told us that he needed special treatments and help, it’s different. There is nothing you wouldn’t do in the process of caring for your family.

When people say, “I don’t know how you do it!” I understand what they are trying to say and most days I take it as a compliment, but honestly, chronically ill families wake up and start the day just like every over family and every other person, you do what has to be done.

Your goal is to make back to bed before exhaustion takes over… and some days you win and some days you don’t, but either way, you wake up again and do what needs to be done. I think the only difference between a Warrior Mom and other Moms is that Warrior Moms have been called into service. I think all moms are Warriors—but not all are active duty.

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Note: If you would like to follow Joey’s progress, visit his Facebook Page.  If you would like to support the Benton family in their fight against cystic fibrosis, you can support them here.  If you would like to learn more about cystic fibrosis, Caroline recommends this link, and you can contact Caroline at her e-mail address.

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