Joy, pains of parenting children with disability

WHEN Helen was an adolescent, she was a devoted member of the Catholic Charismatic Renewal. She got

married at the age of thirty four when hope was almost lost of her ever getting married.

Years after her wedding, she had difficulty conceiving. This did not deter her faith, for she remained unmoved in her resolve to wait on God.

  Five years after, she finally conceived and nine months later had a baby boy. She was filled with joy for prayers answered. Months later, this joy began to turn sour as she noticed some unusual abnormalities in the child. She went back to the hospital and after seeing the doctor she was told that her baby has a down syndrome! She almost fainted if not for the help of the doctor. She felt all alone in the entire world. So many thoughts came to her such as, throwing away the child, poisoning the baby's food. Should she go back to her husband with the baby or just carry out one of these thoughts and end everything about this child?

  The thought of murdering her own child was a guilt she was not ready to live with. She therefore decided to accept this burden of bringing up this child no matter the difficulties associated with it. She named him' Onyinyechukwu', meaning a gift from God.

  Little Onyinyechukwu never crawled until he was eleven months. When he finally walked, his learning was so slow that Helen had to devote more time being with him. Most times she would strap him at her back, while carrying out her house chores as she had no house help. She followed him with so much patience and love of a mother. Four years later, she and her husband decided to have another child but the fear of having another child with similar disability restrained them. However, after much prayers and counselling by some family friends, they decided to go for another child.

  Before little Onyinyechukwu turned five, they had another baby; this time a healthy baby girl without any form of disability. They named her 'Chinazaekpere' meaning God answers prayers. Thus, she became the fulfilment of the desired joy of a mother. This however, did not affect Helen's love for Onyinyechukwu who was actually growing into a lovely child in spite of his disability. He would always stay beside his baby-sister, admiring her and almost wanting to pull her out of her cot to play with him.

  Even at five, Onyinyechukwu could still not communicate clearly. Thus, only his mother understood him and his needs, this made him so much attached to the mother and he never left her side.

  On the difficulty of raising Onyinyechukwu, Helen recounts that it had never been easy as she went through so much difficulty caring for him and almost had him strapped to her back all day, especially before she had her second baby. ‟Not even my friends or neighbours happily accepted to hold my son for me while I was engaged in any work. I only got a little relief while he is asleep or in the evenings when my husband is back from work”

 Helen recounted a painful experience she once had with her friend.‟This very good friend of mine once visited me. She was also married although without any child as at that time. While we were in the parlour, I wanted to go in and have a shower, I then asked her to help me hold Onyinyechukwu while I go for my shower. The way and manner she accepted and carried Onyinyechukwu, one would read from her countenance to mean' though I desire a child, but not this sort of child'. It was indeed so painful, but I had to accept the fact that not all persons would want to have anything with my son.”

  On her experience of being a mother to a child with such disability as down-syndrome, Mrs Helen says it had never been easy for her caring for her son, but because she accepted the situation as it is, God gave her the strength to carry on with such difficult and demanding task of caring for him. She said, through her son she has also learnt how to be patient with people and situations around her- a virtue she never had before she gave birth to him. Thus she sees Onyinyechukwu as indeed a gift that God has given her so that through her son, she would acquire the virtues of patience and forbearance.