Printer Friendly

Margaret Elizabeth: she changed my life.

By sharing her story, the author helps us appreciate how suffering can lessen when parents know they are not alone.

The doctor told me that she would change my life but not to let her ruin it. I have pondered that advice since 1973. Only recently has it begun to make sense to me.

I am the mother of Margaret Elizabeth Pike, born at six months, three weeks gestation. Naturally, she was quite premature; I was young (26), but principally stupid. Someone took away my glasses during the emergency of her birth. The doctor was not present since he believed I was having false labor pains, and I dutifully "held" when told. I did not know I was cutting off her oxygen supply. Guilt? Sometimes that pain rears its ugly head. Acceptance of my daughter's condition? Of course not ! SUFFERING

So many "professed" professionals have written about the stages of grief. I had to memorize three different sets of stages while earning my certification to teach Special Education. Somewhere during the second set, I got angry. How did these supposedly well-educated, well-meaning authors have any real idea what grief is all about?

Yes, they had done research" and had taken surveys. But none of them walked in my shoes. Okay, we all suffer from some form of grief at different times in our lives. But there is no grief, no suffering any greater than watching your flesh and blood start life in enormous pain and remain that way indefinitely. Meg is 16, and she suffers. Because she suffers, I suffer ... it is quite simple. (Margaret was too long for a kid under two pounds so I shortened her name to Meg.)

I took Meg to a children's hospital when she was 14 months old. Any reasonable pediatrician should have suspected something before then. She could not sit up, her eyes zig-zagged in every direction and for the first ten months, she cried this awful, moanlike cry ... not exactly a human cry. I was told that she would "outgrow" it; whatever "it" was. Guess what? Meggie has severe cerebral palsy, has never walked, has 20 percent brain loss, tremendous perception problems, has been hospitalized a zillion times (most recently for a psychotic disorder during which she lost 20 pounds in several weeks), and has always scored off the top of the scale in verbal ability! By the way, a pediatric neurologist solved the mystery of her diagnosis in less than ten seconds.


Perhaps you have detected a wee bit of sarcasm. More seriously, I am scared half to death about the rest of Meggie's life and about the rest of mine (I'm 42). Meg has always been in a classroom for children with multiple disabilities in school and was partially mainstreamed until this year. Her ninth grade year (first year in high school where we live) appeared to be terrific except for problems in socializing with the mainstreamed students. There was obviously more pressure on her than I realized, because she literally fell apart just after school was out in June, 1988. She was admitted to an acute-care hospital, and her bed was placed in the hallway so that she could be monitored 24 hours a day in case of a suicide attempt (how could she kill herself?). She didn't eat until she was given medication to drastically increase her appetite.

She gradually improved with different medications. I brought her home for Thanksgiving in 1988. Her physical mobility had changed and her muscle tone was dreadful. There are many side-effects to anti-psychotic medications which make caring for her and figuring out appropriate educational placement extremely difficult. Although she continues to show some small signs of improvement, she still has hallucinations and attends psychotherapy sessions often.

Every year seems to bring something new, something worse. Meg understands her condition and her present illness. She expresses herself most articulately about it all. One day, she will say that she does not want to spend the rest of her life in her wheelchair, seeing strange figures in her head, and the next day she views the world in a positive light. She talked about marriage and giggled when she announced that she asked Sam (a student in her special class) to go steady ! I just have no more answers now than I ever did. I will say that I have tried to prepare myself for the future. At 37, 1 returned to graduate school in Special Education and earned 56 hours so that I could attend an Individual Education Plan (IEP) meeting with credentials. Then, I worked as project director on two federal grants to train other parents to understand and use the laws which protect children with disabilities in our schools. At the moment, I am a learning disabilities specialist for sixth graders. I am working behind the scenes to establish a parent training center in my school district.


One point which you, the reader, may have detected is that I feel very much alone in the decision-making of our lives. The responsibility falls on me since her father lives two states away. Even if that were not the case, life would still be tough. I must conclude by stating that Margaret and I have the people who enhance our chances for success: her teacher, Valeri; her assistants, Wendy and Diana; her physical and occupational therapist, Sue; Patti, her afternoon caregiver; and Tammy, our mental health expert. Along with her younger brother and her stepdad, Gary, life is looking up day by day.

I know that there are other moms out there who are suffering way down deep. Guess what? You are not alone. The suffering lessens when you help your child and help others.
COPYRIGHT 1990 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1990 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Title Annotation:a mother's story about her handicapped child and how the suffering lessons knowing that she is not alone
Author:Wood, Ann Tucker
Publication:The Exceptional Parent
Date:Jan 1, 1990
Previous Article:Dancing under the stars.
Next Article:Pre-computer skills for young children.

Related Articles
Elizabeth Monroe Boggs.
Modern Medea: A Family Story of Slavery and Child-Murder from the Old South.
French Court Awards Damages for "Wrongful Birth".
French Court Extends "Wrongful Birth" Ruling to Down Syndrome.
Liberation and self-understanding: a study of Bessie Head's female characters.
Margaret Press, rsj. Three Women of Faith: Gertrude Abbott, Elizabeth Anstice Baker and Mary Tenison Woods.
U.S. Catholic Bishops' 2007 Respect Life Program.

Terms of use | Copyright © 2016 Farlex, Inc. | Feedback | For webmasters