Dear Evan,
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.
Love you,
Mom 
