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The following is a presentation given at the national conference of
ADEC
(Association of Death Education Counselors)
April 10, 2010
THANK YOU
I would first like to add my thanks with Jennifer's to the ADEC selection committee for allowing us to be here today. I have been looking forward to today for many months.
INTRODUCTION
In resonance with the theme of this year's conference, I'm here today to put a face and a name and a story and a perspective to the research which is listed on your hand out.
I want to share
1) The honest and candid perspective of a parent who cared for her special child at home for 29 years and explain what that experience has to do with grief.
and
2) The perspective of a parent looking back at a life she lived and no longer does — the perspective of a soul looking down from the corner of the ceiling at the corpus of a life — and understanding. I want to explain how it feels to be the parent of a developmentally disabled child.
Though I have had the upmost respect for ADEC and its members since I first learned about the organization and met several of its members in 2001 when I began to create Judi's House, there are things I suspect you don't know or understand about how it FEELS to be the parent of a developmentally disabled child. And unless you are such a parent, how could you?
You see, parents of special children belong to an exclusive club, although few parents see that membership as a privilege or a gift. We have a special bond that no one else in the universe can share. And no matter how compassionate someone else is, no matter how dedicated, no matter how much someone loves the child or us, if they are not the parent, they can never fully understand.
And that's why I'm here.
My story has to do with grief, though the word does not appear in the book.
GRIEF AND GRIEVING
Grief is not a word often associated with having a disabled child. "Sad," "disappointing" "unfortunate" "tragic" are.
But today I would like to talk about the grief that parents experience when they receive a diagnosis of disability for their child. The moment that their lives go from X to Y and will never be X again.
Four years after Alexis died, I told someone that I was sure that the grief a parent feels when their disabled child dies is different from the grief a parent feels when their normal child does. Not bigger. Not smaller. Just different. And I was challenged to do the research on my instinct. What I found were two research studies done in Wales. Psychologists had interviewed parents whose had lost a disabled child. When asked about their grief, parents confessed that their grief was not different than other parents' grief but that it was compounded because they had never grieved the diagnosis of the disability.
Grief is sorrow that is felt because of a loss.
For parents of special children, that loss is the DEATH OF EXPECTATION.
When parents receive a diagnosis of disability, they lose ...
The expected perfect child — and we all know that child would be perfect
The expected future of the child — the doctor, the lawyer, the baker, the psychologist, the mechanic, the son who will take over the family business, the daughter who will share her own motherhood with her mother
Dreams for their child
Normal parenting
Normal family life
A Normal marriage
A safe future — a happy future — a future in which their death precedes the death of their happy, healthy children
Alexis was born in the baby boomer world of 1975 under the familial shine (or shadow) of grandparents who were born in the Midwest and didn't barter in sympathy. Hard work and responsibility were the answers to everything. The mandate "Get up early and sow the fields" was in their genes.
Alexis was their 11th grandchild, ten of whom were normal. When I was told that day that Alexis would never be normal, I did not get sympathy. I did not get support. I got a silent expectation that I would be responsible and that I would not feel sorry for myself. And I was. And I didn't.
But what I needed at that moment and for the next 29 years was sympathy and support. I deserved to feel sorry for myself. My life had been changed irrevocably. I needed someone to recognize that I had lost my world, and I had a right to grieve. No one ever did. Including me.
Every parent of a special child you meet or work with is grieving, no matter how long ago they received the diagnosis, no matter if they recognize they are grieving or not.
And that's why I'm here. That's what I've waited months to tell you. The grief of parents with special children needs to be recognized and honored and treated.
Because I never understood that I was grieving, in Remembering Alexis, that grief is unknowingly represented by euphemisms — I always felt different, I continually questioned, I made poor choices, I bargained for happiness, I was sad, and, on more than one occasion, I lay on the floor of the walk-in closet in a fetal position, doors closed, lights out.
Since the publication of Remembering Alexis, I have met and talked to many parents of special children, both individually and in groups.
One particularly memorable night last fall I met with 35 mothers of special children of different ages in the home of a mother who had read Remembering Alexis and contacted me.
When I talked that night about the special club we as parents belong to, each of the parents sat up a little straighter in their chairs, each showed an increased sense of esteem. Here, finally, was someone who understood.
But when I explained the grief that I believe they have felt from the moment they heard that their child was disabled, shoulders slumped. Eyes dropped. A palpable silence filled the room. And when they slowly raised their faces, in every set of eyes, I saw tears.
When I asked them what they thought about what I had just said, an amazing thing happened. They began to talk. Hands popped up. Hearts opened. They expressed feelings that they hadn't expressed to their friends or family, perhaps not even to themselves. And we talked for two more hours.
The hostess eventually raised her hand and summarized how they all were feeling, "You're right. The love I feel for my son is so deep ... but so is the grief. They live side by side deep in my heart every day. Some days I'm just so sad. I thought I was being weak."
THE PSYCHOLOGY OF GRIEF
What does this grief do to parents?
Researchers have and will tell you that grieving and mourning cannot start until there is a CLEAR IMAGE of what is lost. I would like to talk about how it feels from a parent's point of view, in a parent's language.
First of all, on a literal level, how can a parent of a newly-diagnosed child face the image of what is lost - the perfect child they did not get? The pain is unbearable. They must be given time.
And what does it mean to "accept the diagnosis?" Intellectual acceptance is certainly easier than emotional acceptance. After denial passes, intellectual acceptance is almost unavoidable. The child simply does not do what other children his or her age do.
Emotional acceptance, on the other hand, can take years and may never be attained. Emotional acceptance involves accepting your life. How many of us are living the life we thought we would? At the moment in which we tragically saw a future we had no intention of living, we realized we would never live the life we thought we would. And we lived that loss each year, each decade.
Emotional acceptance involves faith and spirit and philosophy and religion. Emotional acceptance ultimately comes from a view of the world as benign. And how can parents see the world as benign when their own lives have been shattered? When their beloved child cannot live the life of a normal child?
One of the research articles says it well: when parents receive a diagnosis of disability for their child, "the thread of continuity which makes the world intelligible is broken" and - in my words - parents are forced to begin to create a new world that makes sense to them — a world that encompasses and accepts the differences their lives represent. There are few role models.
Creating this new world is like trying to build a house with a strong foundation. Their vision has been lost. Their beliefs have been shattered. What could they possibly use to build a new foundation? What will hold the building up during storms?
And the storms are certain to come. They hit parents from their blind sides with every developmental stage or milestone that their child does not meet - crawling, standing, walking, talking, going to kindergarten, graduating from high school, getting married, living independently — and with every health crisis or challenge. Every time parents are starkly reminded that their child is different, that their lives are different, the grief process begins anew ...and the house trembles or sags.
And so it should be no surprise that parents of a child with a disability are likely to live a life of chronic sorrow, what you might call "unresolved grief" or "lack of emotional acceptance." Parents of special children are continually grieving. It's not a failure. It's not inadequacy. It's not self absorption. It should be seen by parents, family, friends, and therapists as expected, and it should be recognized and validated.
I'm sure it will be no surprise to you to learn that a common response from parents to their unrecognized grief is composure and strength. Advocacy.
Strength may begin as a cover up and a necessity, but it seeps into their core, and eventually it's no longer a cover up. It's a way of life. But, as you know, it doesn't replace the sorrow. Activity and strength do not absorb sadness. They hide it. They diffuse it.
I was a poster woman for strength. And when Alexis died, that grief that I had never recognized was compounded.
HOW PARENTS FEEL
When Alexis was alive, my life was like those of the parents I have met since her death. I got through each day. I tried to develop routines that would help clear some of the chaos and leave me with a little spare energy at the end of the day. I tried to be a normal mother to her normal sister.
Looking back now from an ordered, spacious life at a life that started at 5:30 a.m. with two daughters, each with different needs, packing two lunches, both very different, dis-assembling a wheelchair at my house, putting it in the car, and re-assembling it at the day care, driving 45 minutes on the interstate to teach Shakespeare to high school sophomores at 7:15 a.m., I realize that those were the years when I felt the most alive. Every cell of my being was vibrating. I was LIVING. You might be surprised to hear that I miss that vibrancy.
I also had a lot of conflicting emotions during that life, emotions that I can now find words for that I couldn't then.
I would like to share those feelings with you, once again, with the hope of shedding light and understanding. I've read this list to many parent groups. They listen in silence, heads bowed, nodding.
When you are a parent of a special child,
1. You believe that nothing else bad should happen to you. Being the parent of a special child is enough. No parking tickets. No marriage problems. No financial problems. No difficult times with other children. Parenting this child is your contribution to the world and it should be enough.
2. Whenever something bad does happen, your mind goes to the worst possible scenario because you have already lived it once - your life has gone from X to Y. There are no easy problems or solutions.
3. You're afraid to be truly happy because you fear that, once again, happiness will be taken from you. You have learned that your life can change in a fraction of a second.
4. You lose your individual identity for a long, long time.
5. You're angry that others don't understand how you feel. This is particularly strong for parents whose child was normal for several years and then became disabled. Anyone who did not know the child as normal can never understand what it feels like to have lost that child and to be parenting a different child.
6. Emotionally you want your child to be everyone's priority. Rationally, you know that isn't reasonable and it won't happen. And the fact that it won't happen consistently makes you mad, and the fact that it makes you mad embarrasses you.
7. You're tired and wonder how you'll ever do this for the rest of your life or your child's life and that thought makes you feel guilty.
8. You feel like a martyr. Part of you likes that role and part of you is disappointed in yourself for liking it.
9. Many, many, many days you don't feel chosen.
10. You long for normalcy and boring but realize that after what you've been through and what you do on a daily basis, normalcy and boring could never again be enough. And that's another loss. As a parent said to me recently, "I try to communicate with my friends and do the types of things I used to enjoy. But I just can't talk about SHOES. I can't possibly talk again about SHOES!"
11. You need to talk. You never tire of talking. You are always looking for a new listener. You fear you will wear your friends out. You know how much you ask of others and it's humbling.
12. You always feel different. You ARE different. Your life is not like anyone else's and you are reminded of that every single day.
13. Intuitively, spiritually, you know there is a special bond between you and your child that is close to divine. But that's your secret, that even you have trouble believing some times.
I would like to end with a poem that was given to me by a parent in the children's ward at Boston Children's Hospital when Alexis was a year old. I thought it was a nice poem, but I didn't identify with it. I didn't believe my daughter was handicapped. I was in denial. I had a long way to go as a person walking this earth. Returning home, I stuffed the poem in a drawer and occasionally ran across it throughout the years. On good days, I thought it might be true. Looking back at that life I lived, I know it is.
Heaven's Very Special Child
A meeting was held quite far from earth
"It's time again for another birth,"
Said the angels to the Lord above,
"This special child will need much love."
Her progress may seem very slow
Accomplishments she may not show.
And she'll require extra care
From the folks she will meet down there.
She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won't adapt
And she will be known as handicapped.
So let's be careful where she is sent
We want her life to be content
Please Lord, find the right parents who
Will do a special job for You.
They will not realize right away
The leading role they're asked to play.
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild,
Is Heaven's very special child."
Edna Massimilla
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