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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Sunday, March 21, 2010

My Journal - Week 31 (21Mar10)

Happy World Down syndrome Awareness Day!

Today appropriately is named Down syndrome Awareness Day because of the date:  3 (March) 21 (For the 21st chromosome in Trisomy 21).  I am hoping that today all the voices are heard and people everywhere who have Down syndrome in their lives are shining.

Recently a group that I became afiliated some time ago discovered that there were some terrible people out there demeaning children with down syndrome by defacing their beautiful pictures.  It got to a point where some of my fellow bloggers were having second thoughs about posting pictures and stories of their children.  This really saddended me and after a while angered me that such bullying will defeat the purpose of us being out here.

It's time I post a little story about how my blog helped someone who needed our voice (this is posted with permission).

A few weeks ago, I received a note (in my new Down syndrome forum) from a mom to be who had learned her baby had a 1 in 3 chance of having Down syndrome.  Distraught, she turned to the interent to research and learn all she could before making any rash decisions.  This is what she sent me:

I received our test results today saying that our baby has a 1 in 3 chance in having down syndrome.  In researching online I found you here & I also visited your blog.  You have a beautiful baby boy & watching his videos & looking at his pictures only further cemented my opinion about the possibility of having a child with down syndrome.  My dr & a few close family members mentioned terminating the pregnancy & I couldn't imagine doing so.  Thank you for your information & all of your research & for allowing me to have a peek at your life with your absolutely perfect baby boy!!

Now, unfortunately the story doesn't end happily.  After approximately 17 weeks into her pregnancy my new friend lost her baby, and after all the worry and concern, Down syndrome seemed so irrelevant and minute in comparrison to loosing her baby.  She wrote:

We had a sample sent to the specialists the day that he passed, My dr. said it should take approx. 7-10 days for the results.  It seems so strange to us now, we were so upset & stressed at the thought of him having ds.  Now, we would give anything just to have him.  DS seems so trivial to be upset about, we wouldn't have loved him any less.  Part of me doesn't want to know what was 'wrong' with him, to me he was absolutely perfect.  I know that if I don't find out I will never get any closure.  On the 12th of April DH & I are also meeting with a genetic counsellor to discuss our losses & family history.  It seems a little too coincidental that both pregnancies were lost within a few days of each other.  They are going to take blood from both of us & run some tests.  I have 3 children from a previous marriage & he has 6!!!  All of them perfectly healthy pregnancies & children.  They are thinking there may be a problem with our genes together....I hope not.  Whatever they may find, I pray that there is something that we can do.  Thank you so much for your posts, it means a lot to know that I have so much support.
It is for this reason I do what I do.  When I found out about Hunter's diagnosis, I turned to the Internet for research.  I needed to read about real life situations, and many blogs had that.  Regular medical information was available but it was blunt and static.  Blogs are full of life and reality.  They had the real stories and circumstances I wanted to read about.  The blogs were full of true emotions, whether joy or sadness.  That is what I needed when I was researching.  If they were not there for me, I am not sure where I would be today.  Family and friends have opinions but that's all they are.  With out the experience, those opinions can not answer the many questions that many of us had when we learned about the Down syndrome diagnosis.

While I never want anyone to degrade my son, deface his picture or do anything negative, I will not be complacent with my blog.  I will endeavour to protect him physically and emotionally but I will not be bullied into submission and stop posting about our life.  Our children need a voice, as do the children with Down syndrome of the future.  Predators will always be out there, but they will not win.  If we can save one child, we have done our job.

1 comment:

  1. Sandi, Thank you so much for sharing!! You are an amazing mommy & Hunter is a lucky little boy!!!


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