Hope is a reason I wrote An Uncomplicated Life

I received this e-mail last week. Reprinted, with permission. To parents of newborns: Life only gets better. To their familes and friends: You have a unique opportunity to see life in an improved way. The joy is palpable.

Expect. Don’t accept.

Thanks for reading.

http://www.uncomplicated.life

Dear Mr. Daugherty,

First I would like to say Thank You. Three weeks ago my son Ethan was born. Prior to his birth, at around 20 weeks, my wife’s OB/GYN noticed some irregularities in his ultrasound. At the time, it was suggested my wife have an MRI and an amniocentesis. After the MRI, but before the scheduled amniocentesis, my wife met with a pediatric neurologist to review the MRI. The pediatric neurologist did not confirm what the OB/GYN had seen and suggested we continue to monitor his development, but that by all accounts our baby would develop normally. My wife decided to cancel the amniocentesis.
It was not until our son was born and had to be taken to the NICU in middle of the night, that the doctors decided to test our son for Down Syndrome. During the three days between the testing and the results, I went through all the classic stages of grief, except for acceptance. Sitting in the consultation room and hearing the confirmation from the geneticist was almost impossible for me to bear. In those few minutes, I felt the loss of the son I thought I was supposed to have. All the typical hopes a father has for his son seemed like they would never be mine. I was in quite a state of shock, and was depressed and despondent.
Unlike most parents facing this situation, I had years of experience working with the developmentally and physically disabled community. Prior to entering law school, I had worked for five years at a residence for men with severe physical and mental handicaps across a broad range of various disabilities. Additionally, I had spent a few summers working at a day camp for disabled children. I had a tremendous reserve of compassion and respect for everyone I took care of, no matter what the situation was. But it was knowing exactly what kind of lives many of them led, the burdens on their families and the communities, that caused me to fear for the future. I had thought that this would never happen to me.
My state of unrest was short lived however. I had (have) a family to care for including a wife recovering from labor, and my two beautiful girls, ages 5 and 1. I knew I had to pull myself together immediately. As an attorney, I usually look to books to educate myself and overcome any deficit in knowledge or understanding. The first book that I came across was your book An Uncomplicated Life, about your daughter Jillian. I was moved to tears throughout much of the book, especially the poignant and revealing ending. I don’t know what the future holds for my son. I don’t know the extent of his delays or what kind of personality he will have, what interests he will have or if like my daughters, he will take after me. But after reading your story and seeing the overwhelming show of love and support that my friends and family have expressed, I feel that I can and will do all that I can to give my son as typical a life that he can have. There is still hope that I can teach him to love the Yankees, how to talk to treat women and to appreciate good music.
I am sure you have received a lot of letters from parents like myself, but I felt I had to take the time to express my appreciation and sincerest thanks for putting into writing your story and giving me the inspiration to be the best father than I can be to Ethan and to all my kids. And finally, thank you for helping me experience the last stage, acceptance. I know I have only had my son for three weeks at this point, but there is a lot going on in my world and no time for setbacks.
Much thanks and God bless you and your family,
Koby Sabghir
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