“Thank you for having me, I love life!”
My daughter Andrea started saying this to us when she was only 3 years old, before any of us knew that she had cystic fibrosis. After the diagnosis at age 4 1/2, she still said it and has never stopped.
Getting hit with the horrible news that your child has CF is hard. It was, by far, the most difficult thing we have had to endure as parents. As we sat at our first official CF clinic meeting, asking questions and getting them answered one by one, the last question I asked made everyone in the room cry, “Will cystic fibrosis take her life away?” I could barely ask it through the tears streaming down my face, knowing what the answer would be, and was, “Yes, it could.”
Since that day, it is the word “could” that I have hung on to. We weren't told, “It will,” we were told, “It could.”
In life, anything could happen, and it is up to us to not live in fear of what that could be. Rather, we choose to live in the now -- today and every day -- period.
Because CF is a progressive disease, Andrea's CF has progressed from just a couple of daily chest physical therapies to adding Albuterol, then Pulmozyme and hypertonic saline, followed by colonization of pseudomonas, thus adding TOBI (tobramycin), increased doses of enzymes and lastly, confirming cystic fibrosis-related diabetes.
With each addition to the daily CF routine, it has been the love of life that has helped all of us tackle each obstacle with full force and continue living. Yes, we do get upset and struggle with the progression of this disease, but we do not allow it to control our lives. As a family, we take each day as it comes. We live and love today and are thankful when tomorrow comes. Each new day is a gift and we cherish it and care for it. It's what has helped Andrea continue to love life. She already knows how precious it is and because of that, lives it wholeheartedly.
Love conquers all, and when you focus on that love, it just makes living that much more rewarding. Cystic fibrosis can't take living away, especially when one loves life!
