Cystic Fibrosis is a genetic disease that is often detected in early childhood or even sooner. And for most CF'ers, they’ll say that the therapy and medications are all they’ve ever known. Dealing with enzymes, airway clearance therapy, nebulizers and frequent doctor appointments is just a normal part of their daily life.
It’s pretty rare to receive a diagnosis at the age of 11, but that’s what my son Carson experienced. To say it was a shock is an understatement. But learning that he, along with his younger brother, had a life threatening disease requiring numerous medications and therapies for the rest of their years was difficult to take- especially for Carson. He was just entering that difficult and sometimes awkward phase in life when bodies are changing, emotions are fluctuating and we’re trying to figure out who we are. Carson was getting ready to enter 6th grade Middle School and was already struggling with self-confidence. Pile on a difficult diagnosis and you get: A depressed, confused, scared and fragile young man.
As parents, we tried many things to teach him acceptance and be comfortable with whom God made him to be. But you can only tell a kid so much- he won’t
Carson lost interest in doing things with friends, and even life itself. I was getting desperate for ways to encourage and help him! When the time came to start thinking about summer camp, (which was normally his favorite time of year), he emphatically told me, “No Way! I am NOT going.” It broke my heart to see my boy feel held back and limited by his disease, when in fact he didn’t have to be. Financially, I wasn’t even sure HOW we were going to be able to send him to camp. We had incurred all kinds of new costs with CF. But I felt like it was worth making the sacrifice to send him. Then, my mother-in-law told us about a website she had researched called the CF Lifestyle Foundation. They encouraged and provided opportunities for people with CF to get exercise and be active in order to live a healthier and longer life. I decided to pursue a grant so that Carson could go to summer camp, and then I prayed that he would change his mind.
I showed him the CFLF application and encouraged him to look it over and remember how much he loved spending time at Woodlake Bible Camp in Grantsburg WI. He was willing to fill it out, but still scared and hesitant to go. He didn’t think he’d fit in anymore with a CF diagnosis.
We received word that the grant was approved and we registered Carson for camp. I called the camp to confirm that they would be able to provide a safe, comfortable and private place for Carson to do his therapies. I told the nurses that he would need encouragement and reminders to do his treatments. They assured me they could handle the situation. But even just before check-in, he was nervous and dragging his feet about having to bring along his Vest machine and medications. If I would have let him, he would have bolted for the door.
I’ll never forget driving away from camp and leaving him there. I KNEW he would be safe and that this was a good idea. But I hurt for him because he was afraid of what other kids would think of him.
About 2 days into camp, I called to “spy” and talk with one of the nurses to see how things were going. She couldn’t wait to tell me how awesome he was doing! “Carson has been so responsible and diligent in doing his daily treatments. We haven’t had to remind him once! And this morning, he even brought a buddy with him while he did his Vest therapy!” I was shocked. “Are we talking about the same kid here?” She assured me we were. The camp nurse went on to say, “I have really enjoyed seeing his Vest machine and watching him do therapy. I’ve learned a lot from Carson!”
Throughout the week, staff posted pictures of the campers on their facebook page and I saw several of Carson, all smiles and having the time of his life. It took some nudging, but that week at camp gave him back his life! He learned that CF doesn’t have to limit him. He can still do the things he loves. And in so doing, it will not only bring him happiness, but also health and strength.
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