My sister passed away recently. I wouldn’t normally write about such things but Ann was a special person. She had Down’s Syndrome.
Hers was the first generation of Irish people with that condition to be fully accepted into the community. Up until then families tended to shelter them for fear of ridicule or out of guilt and shame.
Two people changed all that in Wexford - President John Kennedy who had his photo taken shaking hands with a Downs Syndrome boy. My mother treasured that picture. If the most powerful man in the world could socialize with someone like Ann, then why not everyone else?
Father Tony Scallan had an even greater impact. He was only recently home from the missions in Brazil when he took up the cause of the mentally handicapped, as we then termed people of special needs.
He combed County Wexford in an effort to identify all such people and informed parents of their rights. Then he badgered local and national authorities to establish homes where people like Ann could live full lives, and workshops where they might develop useful skills.
There is a sadness when a close family relative has special needs. One is always faced with the great “what if?” But that is often balanced by the particular love that such people engender.
My mother’s love was fierce. Her main goal in life was that Ann always be provided for and never be a burden on anyone outside the family.
Ann’s birth changed her. Before that she had explored other religions and beliefs but soon thereafter found solace in Catholicism. Though still liberal in attitude, she needed the stability of strict beliefs to deal with the doubts and uncertainties that became her everyday lot.
There is a humbling element that comes with having a family member of special needs - a sense that something has been visited on you that is very much beyond your expectations and, sometimes, your capabilities.
But though there is inevitable regret there is also growth; for you have to deal with a situation that is beyond yourself, and you must of necessity become a bigger person than you thought possible.
You also gain a community. At Christmas parties in “Ann’s house” we gathered with the parents and siblings of the other occupants – people that in the normal scope of things you might have little in common with.
But within our particular cocoon we could relax, for we were dealing with the same intractable problem and cherishing the same small victories. A part of you had opened that you never knew you possessed – it’s quite similar to the feeling you experience when you have your first child - just a tad more complicated.
And that part of you generally helps to soothe the anger and hurt when you hear some unaware person make an unthinking and inhumane remark in relation to special needs people, as so often happens in daily life.
As ever in families, it’s the women who take responsibility and deal with the emergencies and routines that are part and parcel of having a relative of special needs. After my mother passed on, my sister, Mary and cousin Aileen stepped into the breach.
And then there was Josie, a young woman who became Ann’s companion. Josie casually, but firmly, integrated Ann into the everyday life of Wexford town. I would occasionally accompany them downtown to “do the messages.”
How many people smiled and bade Ann a good day or stopped to engage them in conversation; for people with special needs often bring forth a special kind of love and compassion.
Ann loved wine. As my father used to say, “the apple doesn’t fall far from the tree.” Nothing pleased her more than to drink a glass or two and sing along to a Joe Dolan cassette. She loved Joe’s big-hearted songs.
She liked Black 47 too but the music tended to “make her rowdy.” And so it was saved for special occasions, with no alcohol - probably, a first in the annals of this band.
Her other love was Turkish Delight. And during her funeral mass, a small bottle of red wine and a bar of Fry’s were on hand for the Offertory. All that was missing was a Joe Dolan heart-stopper.
Everyone has a part to play in life. If Ann’s was to bring out love in those around her, then this special person succeeded in a way that the rest of us can only aspire to.
God Bless your Family and all of of Ann's loved ones at this time of loss. Imagine the big smile and hug as she met w your mum again! WIll keeping you in thoughts and Prayers.
ReplyDeleteBernie T