Welcome to Our House - The Analogy ©

Having a baby is special. For some, it’s a lifelong dream, for others, a wonderful surprise. Either way, many of us have thought about taking this journey and whether it’s planned or a pleasant surprise, we all have preconceived ideas about what our child will look and be like. But what if it isn’t what we planned or expected? This is a short story I have written for parents who have or are expecting an exceptionally special child.

Welcome to our House – An analogy

After many months of dreaming, you finally decide it’s time. You are going to build that perfect house of your dreams. You have saved and saved, and now it’s time to put your plan into action. You find a wonderful, perfect piece of land in the city. It’s exactly what you are looking for – because it’s the plan that everyone talks about. You envision the all brick house sitting on luscious green grass, surrounded by a white picket fence. Inside is a marble foyer leading into a family room with beautiful oak hardwood floors. Granite lines the kitchen counter tops and there is an island sink in the middle. Upstairs has four perfect bedrooms and the master bedroom has an ensuite bathroom and an enormous walk-in closet, of course. It’s truly a dream come true, and it’s only a matter of time. You purchase the land and think to yourself, in nine short months, you will have it all.

But suddenly your agent calls to tell you, the land is not properly zoned, and the city has not approved it for building your perfect home. They have instead, given you land in the country, where an old country home sits. You are absolutely devastated, your dreams vanishing right before your eyes. You know you can’t back out now, you need a place to live, and despite it not being what you wanted, you know that somehow you will manage and that you can continue on.

You tell everyone what has happened, and everyone is disappointed, some even offering their condolences. You know that everyone else has a nice city home, and that was what you had planned, but you have to come to terms with the fact that you must learn to live in the country.

You go to see the property every month until closing and something funny happens. You start to fall in love with the place. The air is fresh, it’s peaceful and serene. There’s a pond on the land, and the house, though not a new all brick home, is quaint, and has lots of hidden potential. You soon realize it’s not a awful place, it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful none the less. And in the process, you soon realize you may even get to meet some new and wonderful neighbours.

Its closing day and you suddenly find yourself full of anticipation, but you are still a little worried. After all, it isn’t what you had originally hoped for, and the house may need some repairs. But you are determined to accept it, and tackle everything one step at a time. You open the front door, and suddenly you are thrilled with what you see. The house is lovely, and has lots of character. The rooms are smaller but it’s decorated with beautiful attention and detail. The kitchen has marble instead of granite, and the bathroom has a soaker tub instead of a Jacuzzi. There isn’t a walk-in closet in sight, but the rooms all come with an indescribable view. Somehow, you just know that it was always meant to be and that this is now home.

This is my analogy of what it will be like for people who discover that they will be caring for a baby with Down syndrome. For us, it is not a terrible place to be, it is a journey full of surprises, milestones and discovery like any other child. And as the story suggests, sometimes it’s only a matter of ‘point of view’, and surprisingly, once you have been there, you don’t want to be anywhere else. The journey, like all others doesn’t come without some bumps in the road, but once you find your way, it’s all about the place you discovered, in most cases - quite by random chance
Author: Sandi Graham-McWade, Copyright
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Tuesday, February 9, 2010

My Journal - Week 24 (09Feb10)

Controversy vs. Cure  - Should Down syndrome be cured?

 http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/

I am caught between views as I read an intersting article about a theoretical and experimental cure for Down syndrome.  Now, understand there is no cure perse but the idea is running rampant and the controversy is causing some serious debates.  At some point, this idea will become a reality.  Testing is already being considered.  So, the article covers two sides more or less.  In a nutshell;

1.  It is a wonderful idea - it is meant to aid the cognitive development of a younger child so that his or her future development is broadened, never meaning to take away who that person is.
2.  It is a horrible idea - it takes away from the person as a whole, it changes who these (with Ds) people are, and society is trying to "abolish" or "erase" the Ds from people or is just outwardly proving nonacceptance of anyone with Ds. 

While I agree with the feelings and ideas that both sides are saying, there is something that I do not agree with.  No matter what my personal views about Ds are, I would never propose or suggest that someone else not make a certain decision to consider it (should that happen).  The article clearly states that the treatment, should it become a reality, is only for certain people, situations and circumstances.  It is not meant to be a catch all for everyone who has Ds.  The way I see it is, if someone felt that the treatment was beneficial for someone's development, why should that be a problem?  I don't think anyone who would consider the treatment would do so because they are trying to inwardly change their child to be or become someone they are not.  I think that (hopefully) those that consider it do so with the belief and idea that it would aid in their early intervention, not inhibit it.  Where do we draw the line by attempting to help our children to attain their full potential?  But I do agree, it should not be done at the cost of changing our children or their personalities.  Would we be against it if it were additionally able to save a childs life?  Somehow I can't see or understand someone deciding that dying is better than a cure.... (Note - the article does not discuss the ability to save lives, I am just using an analogy.)

This is indeed a touchy subject.  I made a personal decision to love and accept Hunter no matter how he develops, what his limitations are or who he eventually choses to be.  If there is never to be a "cure" then so be it.  If there is no more "early intervention" so be it.  He is my son, and I will love him, support him and cherish him until the day I die.  So the way I see it, if it happens to become a reality, if even we are eligible, only then will we consider it.  Until then, I wont even worry my head over it.  I currently am much too busy worrying about how to never get peed in the face again!

Out of curiosity, how do you feel about it?  I have made a poll for you to decide.  (I would like to collect these statistics for my book.)  Your vote is confidential.

1 comment:

  1. Why I would do it is not to change the child's personality and sure I would accept a child however he/she is given to me but recognizing the world we live in and that nurturing caregivers such as parents are not likely to be around to tend to their needs in a loving and caring way, I would like to give a child whatever opportunities available that would allow him/her to live an independent life and experience whatever challenges they aspire to try or achieve.

    One of my Mother's cousins had a DS son back in Guyana. As a child I knew him although he was quite a bit older than the rest of us. Unfortunately he passed away at the age of 21. One of my recollections of him was that at around 16 years of age, he still had difficulty feeding himself and could not dress himself. Now I know that not all DS children are that dependent (actually he became more dependent as he grew older). Anyway, had an opportunity been available at the time, I am positive that his parents would have chosen to take advantage of it, if only to help their son in realizing a greater potential of independence.

    What would we do if our child was born blind or deaf and had the opportunity to see and hear? Would we not want him/her to experience the sight of flowers, a blue sky, stars on a dark night, snow on the ground or hear a songbird, the sound of footsteps in the woods, the majesty of a waterfall, not to mention the safety factor of being able to see and hear the traffic when venturing outdoors.

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