This poem was written by a mother on the Angelman Syndrome support list. It illustrates beautifully what all of us parents and guardians of angels feel from time to time, when faced with the enormity of the responsibility.
For those of you reading this who are not parents of Angels or severely handicapped children, you really, really couldn't understand what it's like. This poem is not about a parent who can't take it anymore or needs professional help. It's about a woman who is letting off a little steam regarding some of the unfair or difficult things in her life. She speaks for a lot of us.
It all began, a beautiful day, a celebration of love and life when I became A PRISONER
Then hours of screaming 16 of 24, no where to run and hide and To my feelings of being an inadequate mother I became forever A PRISONER
Doctors and therapy, no time of my own, I now had the child's schedule as a guard and me as A PRISONER
Hope is nil for an answer or a cure I must begin to cope, A life with a child nobody wants, not family not the world, I am just A PRISONER
A child not for one, family is gone, must keep a mate to keep the child at home Add a guard to the cell for I am A PRISONER
School begins; I go back to work, the meetings, the neglect, and the lack of care With love and guilt others can use notes and the phone making me still A PRISONER
Child, no life out of control no peace at work told to get off the phone so now my pager keeps me hostage as A PRISONER
I love this child, don't get me wrong, but my love has me A PRISONER
Too much family stuff at work, nobody wants this but my home is my cell now for A PRISONER
Expenses are high; options are few so add another guard to the cell; Because now for my child to love, to a mate and to poverty I am A PRISONER
I've moved to and moved far looking for support from the state Add another guard, for to the quest for a better state I am now A PRISONER
The years have passed, he is now 8, but my health is going down To my body I am becoming A PRISONER
One answer is here, another is there add another guard To impossible choices, I am A PRISONER
No help, that is sure, but rules they implore add a new guard is added Family Services will help to keep me A PRISONER
It is Christmas's and birthdays year after year. Add a guard to the cell. Toys not for a young man, but babies take emotions and make me A PRISONER
Others can do what I can not do, they tie him, and they baby him, and neglect And ignore him my anger is now a guard keeping me A PRISONER
As the years go by day after day I work when I can have a life you see I try to feel free for my cell; it has windows my Lord and me I read and I write and pray that someday My Lord will once again change my life And in this wold set me free.
- Mindye