Guest Author - Wollie Woehler

All human life begins with the seed of a man and a woman. The normal transformation of the seed into a baby is out of our control. Pregnant women and their husbands are seldom aware of the mental atmosphere they can create in the womb of the mother by talking and welcoming the baby even before birth.

Expectations during pregnancy and of the baby’s birth can very from pure excitement over the new life growing in the mother’s womb, or total desperation of not wanting this new life developing during the 9 months of pregnancy.

In this article we are assuming that the baby is as welcome as can be to both parents and grand parents. Yes, even the expectations of grand parents can have an influence on the unborn baby as they can either look forward to the baby in loving excitement or in negative worries about the terrible world this child will be born in to as their attitude influences the pregnant mother as well as father to be.

Then, after months of talking to the unborn child, playing music to it, daddy placing his hand on mummy’s swollen belly feeling the movements and talking to the baby, the big day arrives!

Then the bubble bursts, there is something wrong with this new bundle of love. Sometimes it is there immediately after birth, at other times it takes a few months or years for the terrible truth to hit the new parents grant parents and friends. Perhaps the doctor talks rubbish but the next and the next doctor confirms the first diagnoses.

“Your child has one of the hereditary neuromuscular diseases. The prognosis of how the child, and the rest of the family, will be affected depends on the type and extent of the disease.”

At first the mother will carry the burden alone as it is to hard and difficult to even sharing the news with her husband. Then bit-by-bit the truth comes out. A wave of shock hits the family, grand parents and friends.

Emotions of shock that immobilizes all feeling and carrying out daily tasks like a robot, anger, bitterness, rejecting the child to over protection may be experienced. All the great expectations during the months of pregnancy are destroyed like shattered glass.

Meanwhile the baby picks up all the emotions and a sense of rejection is born deep inside it. If this turmoil of emotions continues to reach the child, it also becomes emotionally unstable. This can lead to many behavioural problems as the child innerly yells for acceptation and a sense of belonging.

In most instances experiencing of the total despair and immobilization of actions towards accepting the child together with its medical condition will turn into action. Parents, grand parents and family start reading, researching and gaining knowledge on the specific type of disease the child has to cope with. As the years go by new challenges come along. The attitude of the parents and grand parents will to a large extent determine the child’s own experience of the disease and his or her coping skills to live life to the full regardless of short comings due to the medical condition.

The type of neuromuscular disease will determine the obstacles to be over come. In follow-up articles we will take a closer look at what some of these challenges will be and how they can be over come.

The old saying: “Where there is a will there is a way” is especially true in a person’s life with extraordinary challenges. I found life challenging despite my blindness and muscle weakness as result of Charcot-Marie-Tooth (CMT) and enjoys even the smallest achievement.