Just when I think I have CF all figured out I am humbly reminded about the complexity and destructiveness of the disease. When the dietician called me from Sal’s doctor’s office I figured she was calling to discuss Sal’s weight gain/loss fluctuations. I was all prepared to recite his weights as well as all of the ways I was trying to get extra calories into Sal. With CF weight gain is essential to their health. Because Sal is unable to digest his food properly, even despite taking all of his enzyme pills when he eats, persons with CF are on a high calorie, high fat diet. Over the last year we have had some big swings in Sal’s weight. With all of the sports he plays we were attributing his weight fluctuations to his activity levels. Very quickly, I realized the dietician and I were not on the same page.
Sal is tested yearly for diabetes. About 10% of kids with CF are diagnosed with cystic fibrosis related diabetes. By age thirty 90% of person with CF develop CF related diabetes. And then she said it…
based on Sal’s symptoms we think he may have cystic fibrosis related diabetes
. One of the few times in my life I was speechless. My lack of words quickly turned to uncontrollable tears. After I hung up the call I found myself two hours from home and on the bathroom floor of public restroom and I couldn’t stop crying. My head was flooded with all of the diabetic patients I had taken care of. Then I started to remember some of the frequent flyer teenagers I had taken care of, several whom had passed away. Then my heart quickly went to my friend Jean who had lost her son to Type I diabetes. How on earth was I going to tell my son that because he has one chronic disease he now has another? How can we fit anything else in? And how will Sal react?
As my head raced with uncertainty, I decided I needed to pick myself up off bathroom floor and make my drive home. When I finally reached Rick on the phone I could hardly even recite the conversation I had with the dietician. I tried to explain diabetes in a 2 minute nutshell as well as what our new rituals might look like. Rick obviously heard the desperation in my voice and simply said,
Jenny we will figure this out, we need to get our game plan down and just do it!
I felt like I was one of the kids on his basketball team he was trying to pump up. For a brief second I choked back the tears and just smiled and I realized what he said, as simple as it may have been, he was right. We agreed to get a game plan together before we told Sal. For the next couple of days my kids thought I had pink eye. LOL I was still struggling to get it together. After a lot of praying and a lot of encouragement from family and friends I finally felt I could talk to Sal about our newest hurdle without any tears.
When we told Sal there was no tears, no why me’s. Sal leaned back in his chair, scratched the top of head, looked up at Rick and I and said,
I got this, just tell me what I have to do
. Then preceded to ask us if he will be like Mall Cop as he continues to imitate the scene from the movie when Kevin James is hypoglycemic and eats a dirty sucker out of the garbage and then miraculously ninja kicks up to get the bad guys.
I learned a lot through this experience. First of all, Sal is way stronger than I am and his perseverance and attitude are resilient. I also learned you do not know what the future holds. To try and speculate on what may or may not happen will drive you crazy. Live in the present and enjoy the moment! Preferable not two hours away on a public restroom floor…but you know what I mean!
As for now Sal will have to take his blood sugar and add insulin to his daily regime. The fight continues and now you know just one of The Million Reasons to Give to fund vital CF research! Our Annual event is less than one month away please join us on April 12th! See tour website for ticket info.
Jenny
