You told me my 5-month-old baby had been born with a fatal illness called Canavan disease. You said he would become “vegetative” and die before his second birthday. You warned me not to become attached to him and instead find a nice pediatric nursing home. You told me there was absolutely nothing that could be done to help my beautiful son.
I didn’t follow one word of the instructions you gave me. 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 and coldly tried to end all hope for love, happiness, and a future.
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 turned twenty years old on October 9, 2017. He graduated high school two years ago and is now in a wonderful work program. 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 even 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 by his side. 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 twenty 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 do exactly as you recommend.
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.