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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Wednesday, June 30, 2010

My Journal - Week 45 (30Jun10)

Lessons and learning for everyone....

I came across a posted message on one of the support boards I frequent and I thought it was an important message that I needed to repost here in my blog.  I modified and added some portions of the content as well as some information in the message.  The original message that this post was meant to address remains primarily the reason I wanted to add it to my blog.

In this journey that John and I have have taken, there are many things we have learned on a personal level and much more that I realize is important to share and pass on so that others have the same opportunity to learn and understand.

I thought it might be helpful to give everyone some information about what language most of us who are parents of children with Down syndrome prefer to hear when referring to our kids.  This is something most of you can carry with you if your child has Down syndrome or not.  And if you didn't know the way we prefer it until now, please don't feel bad or worried if you wrote or have said something that wasn't the way it is written below - many of us did the same thing until someone told us!

Below are tips for the proper use of language for ‘Down syndrome’. The Canadian Down Syndrome Society, National Down syndrome Society and the National Down Syndrome Congress encourages the language below (there is also a link regarding language under my "Welcome to Our House" banner - How to talk about Down syndrome): 

  • Down vs. Down’s. CDSS, NDSS and NDSC use the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in Canada and the United States is Down syndrome. This is because an “apostrophe s” denotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.  Also, the "s" in syndrome is not capitalized for the same reason.
  • People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.” This seems like a minor distinction, but to many it is like the difference between someone telling you “that dress looks pretty on you.” vs. “you look pretty in that dress”.  The first compliments the dress, the latter is a compliment to you.  The originator of the post had also pointed out, "I really don't like hearing "she is downs" that makes me crazy, (would you ever say "she is cancer?" for a person who has cancer?)"
  • Down syndrome is a condition or a syndrome, not a disease. People with Down syndrome can be perfectly healthy and do not need to be referred to as having a sick child.
  • People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.  
  •  Up until recently it was clinically acceptable to say “mental retardation,” but the term "retardation" is no longer acceptable and has been removed from all medical journals and literature.  We currently use the more acceptable terms such as “cognitive delay/disability,” “cognitive impairment,” "intellectual delay/disability" or intellectual impairment." 
In addition, there is something I have posted time to time on some forums I visit.  I always think to myself, I need to post it into my blog, but I never seem to find an "appropriate" post to add it to.  Today's post seems perfect.

Hunter has not only changed my life, he saved my life.  I say this freely despite being a police officer, despite having a few family members with different special needs.  Hunter is certainly one of those gifts I didn't even know I had ever wanted.  Sometimes it's simply wonderful to embrace unknown gifts.  I often hear, I couldn't do what you do.  But the truth of the matter is, you don't know what you can do or what you are capable of doing until you do it.  What I have also learned is, "choice" is often irrelevant.

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