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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Friday, February 5, 2010

My Journal - Week 24 (05Feb10)

Down syndrome characteristics?

I thought a lot about the typical characteristics that Ds brings about.  And in thinking about this, I thought about Hunter's characteristics.  I don't think that Hunter looks like anyone but himself and obviously his family.  I say this because people tend to think that children and adults with Ds look alike.  And while they share certain similar features they do not all look alike, everyone is entitled to look unique.  An unfortunate misnomer.

Knowing that, I wanted to make a list of the things I think make Hunter unique.
  • Upward slanting eyes:  This one is tough.  Hunter is 1/4 Chinese, so the slant is deceiving.  Is it the Ds or is it the Asian genes?  He also has a minor epicanthal fold in the inner corners.  I have slanting eyes but don't have the fold though.
  • Small floppy ears:  This too is tough... he definitely has these ears.  I have very small floppy ears also so, could he possibly have inherited my ears?
  • Small nose:  I feel like I am repeating myself.  Hunter has a small nose and yes, I too have a small nose.  But so did John when he was a baby.
  • Small head:  Perhaps at birth, but he only weighed 5 lbs 14 ozs!  No one thinks his head is small now!
  • Clinodactyly (Crooked baby fingers):  Hunter does have this.  I never even thought anything about my own until I was researching Ds.  Yes, both of my pinkies are crooked.  I am told by the geneticist that this is also found frequently in people of Asian decent.
  • Simian Crease (Palmer crease):  He has one on his left palm only and it is not singular.  Nope, I don't have this cool feature (and as a side note 13% of Asians have this, and it is a sign of being intellectually gifted).  I have discovered that intellectually known people such as Hillary Clinton and Albert Einstein have one.
  • Sandal toes:  Nope, he doesn't have this one and neither do I.
  • Brushfield Spots/Marks:  Wow, until looking in Hunter's eyes, I wouldn't have known about this phenomenon.  His eyes are so beautiful I did a post about them back on 20 December 2009.  I am not lucky enough to have this wonderful feature.
  • Protruding tongue: No more than any other baby.  In this case, Hunter is lucky.  Some babies with Ds, have small mouths and it can be awkward for them, making it look like their tongue is too big when this is not really the case. 
  • Short stature:  Time will tell, but right now, Hunter has one very long midsection.  His arms are shorter than what I would say is average, and his legs seem to be of a normal length.  I myself, am on the shorter side.  Being only 5' 3.5" you can definitely call me short!
For others, there are more and sometimes less typical features but these are the ones that I have noticed in Hunter (and that I can think of right now).  Some of you may be scratching your heads wondering why I have some of the same features.  Honestly, I don't even know myself.  Both Daddy and I were tested and neither of us carries the gene for Ds.  Personally I think that I happen to have some of these features because of my 1/2 Asian heritage.  All I can say is that I wish I had the palmer crease (I could then call myself intellectual) and the amazing Brushfield spots.

1 comment:

  1. Firstly, congratulations on the recent birth of your beautiful child :)

    Secondly, just to let you know I've added you to the Squidoo Lens - http://www.squidoo.com/downsyndromeblogs as requested

    Finally, if you haven't done so already, do take the time to explore some of the other sites of parents of children with DS - there really is a very supportive community on the web.

    And finally, finally, one site I can't recommend highly enough is Conny Wenk who has a daughter with DS but is also a superb photographer who has taken photos of loads of children with DS and their families - well worth a visit :)


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