Thank you to Vicki Benton, Jonathon's mommy, for bravely sharing her post below. (written c. January 2003)
I always knew that my life would truly begin and end the day I would give birth to my first child. My life as a carefree young woman would end, but it didn't scare me because my life as a mother would begin. I always wanted kids and knew the kind of mother I wanted to be, I had fantastic teachers with my own parents.
After a long, hard labor he came into the world tiny and alien-looking, a cute alien who only weighed 4 lbs. But it was okay, he was a baby, I had this. It was love at first sight but the old adage is wrong, love is not blind. I knew something was "off". No one would listen.
For over three years I told any doctor who would see us that something was wrong, they wouldn't listen until one day, a day I'll never forget. Someone finally listened, told me I wasn't crazy and ordered "one more test", but she wouldn't tell me what she was testing for. For three long months I waited for results but nothing could prepare me for the call that came. "I need to see you, immediately", no small feat since it took two hours to get to her office. Once I got there, she said "he has Phelan-McDermid Syndrome and it is rare".
She then explained to me what it is and how much they didn't know about it and that she couldn't tell me what to expect for the life of my child. I listened, asked questions, and maintained my composure through the hour she had set aside just for me. I think I was in shock, to tell you the truth. My son and I walked to the car, I buckled him in all snug and he smiled at me. At that moment, I broke. I cried and I screamed and I truly believe that part of me died. I cried hysterically the entire way home, not very safe in hindsight.
I didn't talk to anyone for days. Then I woke one morning and I WAS FURIOUS. Nothing was fair, no one understood, but I vowed that I would make them understand. Here was my little boy, the love of my life, my reason for living, and he needed me. I would be everything to him, for him, and if people didn't like it, tough. And for the last 13 years, since his diagnosis, that's exactly what I've done.
The part of me that died has never been revived, but other parts of me have surged with a life force that only having a special needs child can do. I found a strength I never knew was possible, a version of unconditional love that is only felt by others like me, a sense of fear that is so intense that it keeps me awake some nights, and a deep, deep grief for all that will never be for this sweet angel of mine. And although I would give my life to make it better for him, I also wouldn't change a hair on his sweet, innocent head.
My biggest fear of all, though, is that he doesn't know how incredibly much I love him. My biggest wish is that he does.