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, July 4, 2010

My Journal - Week 46 (04Jul10)

They say kids give us grey hairs, do parents give them to kids?!

I was looking at Hunter's hair today, something I do everyday - he has the most wonderfully coloured hair.  Brown, blond and sometimes even reds.  But today, instead of finding an acceptable colour, what did I find?  A grey hair.  Now, you will have to understand, at one time Hunter had a really blond hair that one cousin said looked like a grey hair but after a few months that (patch) darkened up to a more brownish colour as babies with blond hairs tend to do.  Since I saw that patch of blonds every day, I knew it wasn't grey.  What I saw today floored me.  I found a single, wiry, course, absolutely grey hair.  There was no doubt about it, it was grey - silver grey.  I decided, despite it being odd, I was going to remove this terrible looking, out of place single grey hair from the head of my 10.75 month olds head.  And so I did.  I also decided that since it was such an unusual thing, I taped it to a black piece of paper, dated it and put it into Hunter's baby book.  I mean, who wants to forget something like that?  As I am doing this, my mother in law tells me that John (Hunter's daddy) also had this strange event happen to him at nearly the same age.  So decidedly this is a genetic ordeal!  While she begged me to leave the hair alone, since it was "one more Daddy-Hunter thing" that they shared in common, I decided that Hunter could do without the premature ageing at less than 11 months old and so I removed ever so delicately.  He didn't even know that I had taken it out.  The more important question at this stage is, are we giving our son grey hairs??  I certainly hope not!  And I am not quite sure if you can call this one a milestone....

Something else I have discovered on Hunter a few weeks ago, was a tiny white patch on his tummy, just above his belly button.  When I first noticed this loss of pigment, (and as funny as its sounds, Hunter is pretty white despite having a olive complexion Mommy and white Daddy) I laughed because I have the opposite problem, I have about three cafe au lait spots (brown pigmented patches).  One spot didn't really concern me, but about two weeks ago I noticed yet another white loss of pigment patch, and then a few nights ago I found a third spot.  I decided to look up what these types of spots were called and I found out quick quickly that the pigment spots are called Vitiligo.  While it appears that these pigment spots are just as harmless as my cafe au lait spots, I decided to research whether this is something that occurs more often in those who have Down syndrome.  And lo and behold, this is what I read:

"Vitiligo is a loss of pigmentation of the skin in well-defined areas. It may occur anywhere on the body and at any age. Vitiligo is not a common problem in people with DS, but is still more common than in the general population. The cause is unknown, but it may be caused by autoantibodies destroying melanocytes, which are cells in the skin that produce pigment."

This was definitely interesting to me, and I can say this was definitely something I had not read or heard of before!  I just hope that it doesn't progress too much and that Hunter doesn't lose what beautiful colour he has now, as he definitely has such a wonderful "colour" to him.  I did find out that the "treatment" so to speak is to use sunscreen liberally as the sun or sunburns can contribute to Vitiligo.  Something in addition that I read but don't put a lot of stake into was that one website suggests that Vitiligo and Grey hairs are linked.  Possibly this may be true, but for now, I think the grey hair was a random occurrence and I will keep an eye out for any more "grey hairs" and "pigmentation loss" in our cute little Hunter. 

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