Meeting the Nemesis for the First Time

            

 

 

       Many of you know that the passing of Daniel, now twelve years ago, was not the end to the trials of our family. Some of you know that my grandson, who is now five, has cystic fibrosis. He has never been sick, but was diagnosed near birth when our state did that myriad of tests that many of us think might be unnecessary. As a result of his early diagnosis, he has been treated at a state of the art center with an eye to preventing the nutritional, gastrointestinal and ultimately the respiratory complications which keep cystic fibrosis classed as a terminal illness for most people afflicted. 

            Although our family takes very seriously this diagnosis, and does the breathing treatments, medications and everything his specialists tell us to do, our grandson lives as close to a normal life as is possible. Because he is well, I don't think he really accepts that he has any type of an illness. He is also blessed with lots of energy and enjoys outdoor play.    Because physicians and specialists don't want children who may share similar problems and to share organisms that one cystic fibrosis sufferer may have and another one might not, they are discouraged from visiting or playing with one another. Most physicians say they should not be closer than six feet.  We have been amused at times by people's reactions to COVID-19 restrictions because our grandson lives with such restrictions, all the time, and therefore so do we.

 

             This week was the first time that our grandson accidentally met another child, of about the same age, also with cystic fibrosis.  Unlike our grandson, this child was already limited by the disease, short of breath and on oxygen.  It was the first time our grandson saw what this disease could become, what it might look like, and what the future could potentially hold.  I wanted to cry as I witnessed the compassion our grandson had for the other little boy. He genuinely had empathy as he conveyed to the boy that he too had this illness.

                              To this point our grandson had known cystic fibrosis as an annoyance, an expense, and a worry for his cystic fibrosis specialist physician and for his parents. He knew it as an abstract, and perhaps he thought of it as a fantasy his doctor had.  It broke my heart for him to see it for the very first time as a reality, as an issue that could alter the course of his life, or even end it. It hurt to see him processing later that day, what this disease could mean.   "Nana, will I have to go on oxygen ?" he asked me later.  I took a deep breath.  " We are lucky that your cystic fibrosis was diagnosed when you were a baby, and this gave the doctors the chance to start many medications and to see you every three months. It is their plan to try to stop the disease from activating in your lungs.  So far, you have only had symptoms and signs of the disease in your gastrointestinal or tummy region". I told him.  He asked a few other questions and eventually I had to tell him the truth, which is that whether the disease will activate in his lungs is in the hands of God, and that we will do everything possible to try to prevent this."   When we finished our discussion he understood and seemed to accept that the matter, and all matters, sit in the hands of God.  This of course is true for all of us, and was also true for Daniel.   Prayers for our grandson's continued relative health are appreciated.