One year ago today, we received the phone call that changed our lives forever. It was the Wednesday after the October General Conference 2013. The day that I was told my happy, carefree, perfect five week old baby boy had Cystic Fibrosis. Cystic Fibrosis? We had so many questions. Dr Larson and the team at Primary’s were so great to patiently and calmly guide us through the all the information and arm us with the medications and training necessary to begin your treatment immediately. Then came the dreaded question, “What does this mean long term for Evan?” And the dreaded response that I’ll never forget. “There have been many advances in the last several years, but this disease will most likely shorten your son’s life.” My world crumbled.
How could I ever see beyond the dark blur that consumed my every action? How could I function normally knowing that even with recent medical advances there will most likely come a day when I will have to burry my son? I cried every day for months until my face was swollen and my soul hurt. But, through the tears you were there smiling, growing, living.
You. You, my son, are what saved me.
For the past year, your care has been our primary concern. To gain weight, capsule after capsule of pancreatic enzymes have been cracked open onto the end of a baby spoon with applesauce and fed to you before every meal or snack. We have watched as your weight as steadily decreased in percentage from the healthy 7 lb 15 oz baby you were born as. We have shoved every kind of high fat and high calorie food at you we could think of just to have you gain any extra ounce possible. We have been medically diligent, never missing a day of inhalation treatments and chest percussion therapy. We have cried as you have cried, your tears begging us to stop. But, together we push through the tears, ever determined to keep your lungs open to give you the precious breath that you need to survive.
Although I know this disease will slowly take over your body more and more as you get older, I can promise you this. No matter how bad the pain, how long the day, or what the statistics say, we will never give up. You have been blessed with wisdom, strength, courage and determination already far beyond your years. Your strength as a one-year old has given me strength. Your love for life has given me a purpose beyond that of my own. One year later and you are still lighting up the room with your gentle nature and loving spirit.
There is still no cure, but for the first time there are new drugs that have begun treating the underlying cause of CF. So we hope. We wait. We will not give up until you can breathe without pain. I will be here right beside you fighting every breath with you.
Today, we celebrate you. We celebrate the life you have lived and the life you have yet to live.