You told me 5-month-old baby had been born with a fatal illness. You told me he would become “vegetative” and die before his 2nd birthday. You told me not to become attached to my baby and find a nice pediatric nursing home for him because it would be the best thing for everyone. You told me there was absolutely nothing that could help my beautiful baby.
I didn’t follow one word of the instructions you gave me. I was already attached to my baby, and rather than accept the inevitable outcome you described, I chose to fight for the life of my baby.
I hated you that day. You casually ended all hope for love and happiness for my baby.
I no longer hate you; I pity you. Your words were a reflection of you, your background and experience with life. Your words have nothing to do with my son’s potential or value. I was able to recover from that last appointment with you pretty quickly and begin my quest to save my baby, a baby you saw no point in saving.
My son will be 19 years old on October 9, 2016. He just graduated high school, and I was in tears hearing his teacher speak about him and how everyone at school loves him. The teacher also mentioned how intelligent he is and how he made improvements in math as a senior. She told everyone how much of an impact Max has had on the staff and students. Max is nonverbal and disabled. But even with everything against him he’s shared himself with others and made an impact on his own, without me. This is more than I ever dreamed possible. He’s happy and lives a meaningful life full of activity and an abundance of love.
So to the doctor who told me 18 years ago not to become attached to my baby and look for a nursing home where he could die without “disturbing” the family, I say this: you should really be more careful about what you say to parents when giving them a horrible diagnosis. I understand you don’t want to give false hope, but some parents might believe what you say and listen to what you tell them to do. I wish you could have been at Max’s graduation. The boy who had no hope and no future is a happy, well-adjusted young adult. I hope knowing this would help you do a better job of delivering bad news in the future.