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The gift of life.

The Gift of Life is not free; it demands courage, especially from children, who face chronic illness, and their families.

As this day comes to an end, I am grateful. I know the reason for this day. I must now find the ability to express the emotions in my heart. This day is mine, and I cannot waste another moment. If one person is helped to understand my world as a parent of a child with special needs then I have succeeded. I must succeed if not for myself, then for those who have yet to experience these hardships.

There is no easy way to express emotions, but a voice inside is compelling me to reveal what I now feel. Through events in my life, I must now express to those around me, and those yet to experience this battle for life, that there is a need for others to hear our stories.

In January 1984, my life was blessed with the birth of my daughter, Elizabeth. I was scared of the responsibilities of parenting, but Beth immediately reassured me with the gentle touch of her tiny hand. I had heard that God blessed women with the instinct to be a mother, and I quickly learned the role this would play in my life.

Our doctor assured us that Beth was fine, even though the delivery was difficult and complicated by the cord being wrapped around her neck. Shortly after her birth, as we were becoming better accustomed to our new life together, I realized something was wrong.

Beth was having difficulty breathing and swallowing. Our doctor continued to express little concern over this. Then on May 25th, the doctors at Children's Hospital in Columbus, Ohio, listened. Beth had stopped breathing.

LIFE IN JEOPARDY

Beth now suffers from a combination of respiratory problems that can threaten her life. She periodically has episodes in which her breathing is interrupted or stops for a period of time. The doctors have concluded that the problem is irreversible, and her life can be in jeopardy.

Life is so short and, yet, there have been moments that have seemed an eternity when I would watch and wait the recommended time, listening to the alarm that signaled her distress. The monitor that has been attached to her chest while she sleeps offers no security for her life. The equipment does not provide life sustainment, but does allow precious seconds to hopefully stimulate breathing. I have watched her tiny chest expand and the fear swell in her eyes when breathing has been difficult.

There are times when I feel alone, and my fears for her seem to take control. My life is not mine. I cannot participate in other activities without the guilt of being away from her overwhelming me. I wonder where I can fit in.

ACCEPTANCE IS NOT POSSIBLE

Over three years have passed, and we are conquering new obstacles every day. I feel in control, but never lose sight of the facts pertaining to her condition. Our lives are different, and I envy the serenity felt by those parents who can take for granted the special gift of a child's health.

Many ignore her condition and feel that I dwell on the difficult moments. How can I make them understand that she may look healthy, but her condition seems to have a mind of its own and, at any moment, could take her from me. Imagine, if you can, being told by a doctor that your child could die; being slapped in the face with the brutal reality that offers you little control and no guarantees. Many days and nights are spent reassuring her and praying for her continued battle for life. My prayers are for a tomorrow. I want to see her grow and live each day to the fullest. We are coping, but acceptance is not possible. We continue to search for answers, realizing there may be none found at this time. I work hard on facing the reality of her condition and want desperately to someday have the peace of mind to see her lead a normal life.

We are instructed to take control of th illness, not to let the illness control us. how is that possible when each day, as I look at my daughter, I am reminded of my fears as well as my blessings? To me, this is a positive approach to a tragic situation; the only way for me to survive. We are not unique, but in a unique situation - one of grasping only to the hope and love within our hearts and our prayers.

As she grows into this special individual, we beam with pride when she accomplishes what had been so difficult. The victory makes all of this bearable.

The battles that we will face will be approached the best way we can. My daughter is one of the lucky ones - a survivor. I feel so much pain for her when the condition takes control because I feel helpless. All I can do is watch and devote my thoughts to her strength and depend on her love for life itself.

The beginning to all of this seems so long ago, and our lifestyle has changed so much that it is hard to imagine how we have coped. I recently forced these emotions to come to life because of a conversation I had with a new father. I could see his innocence and could sense his security for his new daughter. I wanted to force him to see the reality I now face to better understand the outpouring of my emotions.

There are those who reluctantly listen to, but refuse to hear my cries for help, for understanding and for acceptance. So many judge parents like myself, but few want to become involved. They will never feel, as we have felt, the fears and grief that remain a constant reminder of days past and those yet to come.

CHERISH EACH MOMENT

If I have learned one thing through these days of fear for her life, I have learned to cherish each moment we have because life has no guarantees attached. Life is to be valued as it is - a certain gift from One much greater than any human.

I am now one of those parents who must find a way to help society accept children like my daughter. These special people are our future and are entitled to succeed. It is my job to now help her reach the success she strives for - LIFE.

My life now revolves around children like Beth; those who are also chronically ill or who have special needs. I watch their stories on TV because I can associate with their emotions and conditions and can fit in. Families like mine do not dwell on the negative side of these stories involving illness, but search within ourselves for the hope of a tomorrow that these stories often represent.

THE COURAGE TO CHANGE

I must work to contribute to the daily expense of living, but we seem to fall deeper in debt because of past and future medical expenses which win hopefully provide Beth with a life as pain-free and normal as possible.

We live in a society that bases the lives of many facing a long-term illness on the availability of the all-powerful dollar. We are honored to live in one of the richest countries in the world, but one that closes its doors on those who may only want a chance to survive one more day. Technology has expanded successfully into many uncharted areas. Change can only be made when people like me force others to become involved and to open their eyes, focusing on life sustainment regardless of the ability to pay.

I wonder how things got so complicated. Who gave the right of choice to live or die to a chosen group of individuals?

To me, the question of life should be between an individual and our Creator and should not be held in the hands of the person who has obtained the most degrees or certificates. It comes down to courage; that's what it takes, not money. This courage can be found in the eyes of these special little people who face insurmountable odds with a smile on their face. Courage to fight back their tears of pain and courage beyond belief to reassure those they love that everything will be all right.

I personally witnessed the true meaning of courage, as I watched a young lady prepare those she loved for her death. She was able to express visually what could not be spoken. She taught of love and acceptance of her days to come. She expressed her love for life before her parting to a new world free of pain and filled with goodness and the born-again ability to run, laugh and love. She was more than my eleven-year-old niece, but also a profound teacher of love and life. Love, as she taught, cannot be wasted. Her life will live forever in my heart and all of those she touched. If I can accomplish a fraction of what she did in my life, then I know I will also be a success.

There are worse things in life than death. Death of one so young and innocent can destroy, but can also strengthen the bond to strive to fulfill one's dreams.

It seems strange that people reach out and help when a tragedy strikes, but if the problems were addressed prior to their trauma a possible solution could be available. Keep in mind there is a difference between a solution and a cure. The solution, which can make a situation bearable, could be as simple as the manner in which a problem is addressed, even though the cure is not possible. Many families with children having special needs no longer pray for cures, but for the strength to endure, and provide the necessary treatment, equipment and support that will be needed for their tomorrow.

I am not a woman with an extensive education, but a parent and aunt of children with special needs. I must complete my job to these young fighters and force change. This country must face their needs and direct positive energy to help them. I know in my heart success if possible. These children are our hope, our guarantee for a brighter tomorrow, and we must now provide the foundation for their success - hope, love and acceptance for just being the special people they are.

Lori G. Miller lives in Laurelville, Ohio, with her husband, Gregory, and daughter, Elizabeth, six. She is a volunteer for Children's Hospital in Columbus.
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Author:Miller, Lori G.
Publication:The Exceptional Parent
Date:Jul 1, 1990
Words:1778
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