Monday, 25 June 2018

Blog 107 - Family and the Child with Disabilities

Family and the Child with Disabilities

I have been pondering over what to write about for this blog. In fact, I have probably thought about it for too long, as over a month has passed!

On the wall, near my bed, in between two cute hand-drawn pictures my eldest daughter had done when she was in preschool, is a photocopy of a story. It is sticky taped to the wall, and is also located under one of my wedding photos. This story is about being a mother of a child with disabilities. Yesterday I was lying on my bed, listening to some music and my attention was drawn to it. I could not remember what the story was about but knew it was important as I had taped it to the wall so I could refer to it for encouragement. The story had been there for probably twelve years or so. I had attached it to the wall after I'd given birth to my second child who was born with my craniofacial syndrome. (My first had also been born with my syndrome.) Little did I know that it wouldn't be long and I would give birth to my third child who would also have a disability... not my syndrome but one that was foreign to me and would make me see the world in a completely different way.

In 2007 my completed family would consist of four out of the five members living with a variety of impairments. This was really difficult for me to come to terms with. As a Christian, I would question  God on many an occasion, asking Him why all my children had to be born this way and even why did I have to be as well. The questioning would come swift and fast after sitting through my children's long painful surgeries and trying to help them cope with mental illness caused by their syndromes. It didn't seem fair that my children were all given significant challenges which most other children didn't have to deal with. But as a Christian, I knew God had plans for our lives and He had much love for us. There was a reason, and all would be revealed over time.

One of the reasons I know I am immersed in a life full of impairments, is to help other families. My direct experience with the range of medical issues has enabled me to circulate in many different spheres and through that, help a myriad of people. I know I have been called to care for and nurture my family, and to help other families going through similar situations.

No family on earth is identical, but those of us who have children with disabilities do have a unique perspective on the world and what is important. We don't take our children for granted and we treasure the simple things. Our perspective is valid and adds light to the darkness that exists.

Let me now share with you, the story that is taped to my wall. Before you read it, I must say that I don't like the word 'handicapped'. That word is not used in today's society:

God Chooses A Mom For A Disabled Child
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, Nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstong, Beth; son; patron saint, Matthew.

“Forrest, Marjorie; daughter; patron saint, Cecelia.

“Rudlege, Carrie; twins; patron saint…give her Gerald. He’s used to profanity.”

Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps. “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in mid air.
God smiles. “A mirror will suffice.”