Maureen Webber, Contributor 
WEBBER
I AGREE it is not the exclusive right of women; we are not always the primary caregiver in a household when someone is ill, weak or in this case disabled, but you know what, we seem to know how to take the lead role. Or does it get thrust on us.
In my journey as a mother of a child with a severe disability, I want to stop and salute other mothers on this journey, where we focus on not how far we are going but on how far we go.
It is well-accepted that the average woman has two jobs the one she gets paid for when she works out of the home and the other for which she is rewarded as she watches her children and her relationships grow.
When you parent a child with special needs, one with a severe disability, you get a third job where multi-task you must, and become advocate/caregiver for life/therapist.
I salute the women with three jobs and those who have no choice but to stay home because with the absence of state support and the reality of inadequate wages, they cannot meet the cost of critical caregivers.
I want to tell their stories the women who call me sometimes just to cry, sometimes just to ask for advice, others who say thanks for helping to ensure that we are still visible. "All sorrows can be borne if you put them into a story or tell a story about them." (Isak Dinesen).
On International Women's Day, I want to salute them. The women did not ask that their names be withheld. Some said it did not matter, but I have chosen to use alternate names.
MARIA
There is Maria. Her son is now eight years old, and she started by telling me that, although he was at home, he was able to use the bathroom on his own. Why is that the first thing we learn to celebrate? Because, it is the primary thing that keeps our children out of any formal learning environment.
Next, she celebrates that he will go and get things, that he will follow instructions.
Maria stays home, but would do anything to have a job, although she cannot imagine what would happen to her son. She is on the waiting list for the School of Hope in her area.
It was only when he was five that she received his diagnosis.
I asked, "What was the first thing you did when you heard your son's diagnosis"?
"I cried ... and I am still crying." Maria said that when she learnt then that her son was autistic, she questioned God and asked "why me."
I told her that when I found out about my son Brian, I too asked God "why me" and she (God) responded "why not you?" I have never asked that question again.
DIFFICULTY WITH BEHAVIOUR
Maria said she could not understand, how could this happen. "My daughter is normal and intelligent, what could have gone wrong [with my son]".
Maria and her son live with their extended family, and they have a difficulty accepting his behaviour.
Maria explained, "Sometimes I am angry, sometimes I am frustrated, sometimes I hit him, then I am sorry. I was in denial, I thought that he would get over it and he would become better."
As we continued to talk, I heard Maria's frustration ... "This is a long-term thing, it does not go away. He cries a lot, eats a lot, I feel embarrassed."
When I asked her what she hoped for most, she said, "I hope that God will heal him".
I reminded her that the 'healing' she was seeking might not be possible. Maria sighed and conceded, "then I will have to live with 'it' ... when he gets older, it will get worse."
We ended with her final plea: "All I want is for my son to be normal."
JENNIFER
Jennifer is the next one. I talk to her a lot. I feel I know her daughter Anna, now almost 14, diagnosed with severe mental retardation; she has cerebral palsy.
Today, I told her I was calling to ask her a few questions.
She said "How did you know I needed to talk? I am feeling so down."
I gave her a 'telephone hug' and we began.
"The doctors told me she may not live. But if she lives, she will be totally mentally and physically retarded ... I cried at first". But she did not cry for long: "I will live with it. This is my first born."
In the beginning, she did not feel as depressed, but as the important milestones came and went "you realise that she is not going to live like other children."
For their daughter, it was her father who had a difficult time at first. She just braced for whatever would happen.
Jennifer said she never asked God why this happened. She told me that having another child helped: "I felt liberated, the second child tells you everything is okay."
I am thinking that she, perhaps, meant liberated from any guilt was this my fault was there something wrong with me. I am thinking that because I admit I felt that way after Anna-K, my second child, was born.
REMINDER OF GOOD THINGS
Jennifer has two jobs. The third job some of us as mothers of children with severe disability have, is being done by Anna's father. It is Daddy who stays home with her.
They have to keep Anna on valium. "It keeps her from being irritable, always crying, other medication did not help."
Wow, I think, I never knew this. I am still at the stage that, despite sleepless nights and challenging behaviour, I resist even the idea of putting Brian on 'medication'.
But I do not judge, Brian has taught me not to judge.
When I asked Jennifer what she wished for, she said "I would be happy if she could talk. If it does not happen, I will go on, as long as I have a job so that I can take care of her. A better job would be good so that we could afford a helper to give her father some relief."
Jennifer is attending a university to improve her ability to earn.
She said with significant pride, that she "loves and accepts her, that I would not trade her in." She stated that she would have liked to be able to leave her for a day to get a bit of time out.
But her home is her [daughter's] home. "She is our number one priority."
What do you fear the most? "I fear her dying."
When we were ending, I said to Jennifer, "You sound so much brighter than when we started talking.'
"Yes," she said. "sometimes talking reminds me of the good things."
This is a salute to you all, not an effort to get sympathy.
It is not intended to be angry, just a moment to tell our story; our story of a world of helplessness and vulnerability; of lost relationships; of friends who are afraid to touch us; of sadness, which many of us work through in different ways.
Our story is also a celebration of what our children have achieved. It's a story of our transformation.
