As I reflect back on 2015, it always amazes me that the joys, experiences, and challenges that transpire in our lives are uniquely different every year.
I remember the most difficult years of the struggle of caring for my son health-wise were the first five years of his life. He had retinoblastoma, a malignant infant eye cancer that was both life threatening and blinding. Our family managed to cope and survive through our parental worry and anxiety, balancing attention and care for my other children, financial stress, and scheduling of the monthly and bi-monthly surgeries under anesthesia. I didn’t know what the future would hold for my son but I never gave up hope.
Years went on and ultimately my son’s life and vision in one eye were saved. He has experienced 28 years of education, travel, the joys of friends and family, and has decided he wants to give back. He will be graduating from Rush Medical School this May 2016 and will be working as a resident as a family practitioner. He deeply feels that his doctor saved his remaining sight and life, and it is for that reason my son has been able to live life to its fullest. He now wants to help families to better their healthcare so they will have their own stories to tell.
Both of us recognize how families need support and can find it through networking with their peers and connecting to community resources like FamilyConnect! My son Alex will make a wonderful doctor as he understands families who have children with special healthcare needs.
You all have your own stories of having a child diagnosed with a rare cause of childhood blindness and many of your children have additional disabilities to cope with. As each year brings new joys, challenges, and experiences, never give up hope and love and enjoy each day with your family.
Wishing you and your families a Happy Holiday and a Healthy New Year!