Five years ago today our lives changed forever. Our
beautiful son Douglas was born and a twenty five month odyssey of hope, joy,
fear and pain began. Douglas spent
months in the Cleveland Clinic Children’s Hospital. He was diagnosed with
CHARGE Syndrome and he had thirteen major surgeries including two heart surgeries
and dozens of procedures. Our journey with Douglas culminated with the heart
break of October 1, 2010 when Douglas left us while we held him in our arms.
I can remember our daily routine of affixing his feeding
tube, putting his hearing aids in and doing his physical therapy. I can remember how being with Doug in public was
like being with a Rock Star. Perfect strangers would stop us simply to talk to
Doug. He had an aura about him. He attracted people to him as if he were a
magnet. He had a gentle spirit and was
always smiling.
When we would go to the Cleveland Clinic for his doctor
appointments we would be stopped in the hallway every time by someone who knew
Doug or had him as a patient. It was surreal
how well known and how popular this small child was. He was inspirational to so
many people.
I think about Douglas every day. I talk to him and wish that
I could hold him one more time. I often
think about what he would be like and how much he would love his younger
brothers. I always tell people that I
have FIVE children, not four. I have
four at home and one in heaven.
It was a privilege to have been chosen by God to be Doug’s
parents. We learned so much about ourselves and the truly important things in
life. Douglas made Catherine and I better parents. He made us better people. He
brought us closer and he brought our entire family closer. We are closer to our parents, siblings, aunts
and uncles, cousins, nieces and nephews BECAUSE of Douglas.
I want people to know that I have a son named Doug. He wasn’t
a fantasy and he isn’t dead. He lives in our hearts and his soul waits for his
mother and me in heaven.
Happy fifth Birthday Doug! I love you and miss you every
day!
Love, Dad
