Going on a trip

by barbznz

In my last post I quoted the story by Emily Perl Kingsley. She said pregnancy was like planning a fabulous vacation but when you get off the plane you have landed in another place. In her case she was planning to go to Venice and ended up in Holland.

In my case, I feel like I landed on the Arctic circle. While the northern lights are beautiful, the place is pretty barren and it’s cold. and There aren’t  many people there. It takes longer to appreciate the beauty of polar bears, seals and reindeer. You can’t even find Santa Claus’s workshop. There are bleak dark winters and nightless summers. It’s a tough environment. And it took a lot longer to appreciate.

It was really hard for people to understand what it is like to have a child with severe multiple disabilities. Don’t get me wrong, I loved Suzanne from the first moment I heard her heart beat and I love her still. My life is so much richer since becoming her mother. But given a choice, I would wish it on my worst enemy, it is a heart breaking journey, 

I had a child who never called me Mummy, who never said I love you, who didn’t learn to talk or walk or  grow up, have a first date get married or not and have children of her own, These are huge losses. She is my parent’s only granddaughter. The enormity of what I lost is overwhelming.

People don’t understand, Over the years I have had people say the stupidest things. As you know, my brother said it was God’s punishment. My mother said it was because I was lifting old people when I was pregnant. Little old ladies would tell me that God gave her to me cause I was special. Now really who wants to be that special. Others said, God gave her to me because I could cope. Rubbish, there were hundreds of children institutionalised in this country over the years.Well meaning people would say I was lucky and make jokes about how good Suzanne was, I could put her somewhere and she would be there when I came back. I didn’t have to worry about her running on the road.

Apart from the Grangers’ in Upper Hutt, I didn’t meet another parent who had a child with such severe disabilities until much later. I would attend parent groups. There concerns were so different to mine. They worried about their children growing up,  getting work and having relationships;  I worried about basic stuff, whether someone would talk to her, feed and change her.

I had a child that I hoped would out live me because who will take care of her when I was not around. I talked to a professional who known us for a number of years. She said it was obviously that I really didn’t get a handle on just how severe her disabilities were until she was over four. I just kept hoping for a miracle that never came.

But I loved Suzanne. I would sing to her all the time. Our song was You and Me Against the World by Helen Reddy because in reality it was. 

And over time,  I learnt to appreciate where I had landed. 

© Barbara Hart 2014


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