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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Monday, March 1, 2010

My Journal - Week 28 (01Mar10)

We would do anything for our children, but does that include stem cell treatments?

Every time I look online for a new forum to meet and chat with other parents who have children in their lives who have Down syndrome, I see ads and treatments posted on the site for the possibility of curing Ds.  Like any curious mom, I check them out to see what is being said.  Now, I have no intention of feeling or believing that my child needs "curing" but I am always open minded enough to think that if there is something out there that may help my son better his own potential, I will listen.  If there is a book, or video that will help Hunter to learn, I may buy it.  In that same case, I keep my mind open in that very same way, when doctors suggest that someday there will be help available that they call a treatment.  What I will not do, is think that my child needs to be changed.  If there is something that may help him learn better, or develop better, like any scholastic tool, if it doesn't harm him, I will listen. 

Here is what I came across (first the written testimonial of the person who's son underwent this treatment):

Luca - Down's Syndrome

Luca’s mother - “I was told by my pediatrician my son Luca had Down’s Syndrome and that their was nothing that could be done. After his stem cell treatment a miracle occurred, he eventually became completely normal in appearance and his I.Q. actually tested higher than average for his age”.

This is the video about the doctor and the treatment.  (It is 18 minutes long, because it has three different stories one of which was about Luca and his Down syndrome treatment.)
Here is the web site regarding this doctor and treatment:
http://www.medra.com/?gclid=COG1i7uKl6ACFdx05QodLzqmeA

Like my last post about potential cures, I am left with a curious and conflicting feeling.  I accept my son, and I like him just the way he is, but is that irresponsible of me not to consider an available "treatment" that supposedly could help him where his IQ is concerned?  I am left with the thought, if my child did not have Ds, would I consider "treatment" to raise his IQ if it were low.  Because it is medical, is it different that we as a society are constantly struggling with always trying to better educate our children and ultimately provide them with the means of making them smarter?  Is, at the end of the day, the result different than the TV infomercial that shows a baby reading due to a video that teaches the child how to relate an image to a word?  (Yes because this is a medical treatment, and the other is a learning tool.  Hopefully the end results are the same, but the medical treatment gives a child with a genetic anomaly the chance at achieving the same goal.)  So at the end of the day, where does that leave us?  Are we bad or good parents either way?  Are we bad because some may think we are trying to change our child, or bad if we don't do it.  And are we are good because we accept our son as he is, or because we want to help our son and give him the best possible treatments available. 

I have an ongoing poll regarding potential cures and what you would do.  Please visit the poll and vote if you haven't already.  I am curious what others think about this issue.

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