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, September 1, 2010

My Journal - Week 54 (01Sep10)

You gotta have heart, miles and miles of heart!

Bum budda bum!  Ta da!  Drum roll please....  (And every other wild sounding cheer that sounds like an introduction for something utterly amazing and wonderful!)

Today, Hunter had his six month follow-up check up for his heart.  For those who do not know the story:  I will go back to the beginning - way back.... to 27 weeks pregnant (or there abouts).   Because I learned that Hunter was going to be born with Down syndrome from my Amniocentesis, I had many high level ultrasounds one of which was to discover if Hunter's heart would fall into the 40-60 percentile for heart defects.  Even though I had several monthly high level ultrasounds that signified no particular problem with Hunter's heart, my Genetics specialist recommended the high level prenatal echo-cardiogram.  I attended North York General Hospital to have the echo-cardiogram done.  After a 45 minute specialized ultrasound, my unborn baby was declared to be heart defect free.  Though they could not confirm 100% that there would have absolutely "no" defects, they assured me that they could not see anything.  The reports were signed off by the doctor and filed away.  Fast forward to the second week after Hunter was born, I was told to further ensure Hunter's heart was fine by having Hunter seeing a cardiologist.  Since I had such reassuring results from the prenatal echo-cardiogram, I really wasn't stressing about seeing the cardiologist with haste.  Our genetics department however, was not as laid back as I was about it and suggested that I make the appointment as soon as I was out of the hospital.  I called the cardiologist that Hunter was referred to and surprisingly they advised me that I needed to come in with Hunter right away, knowing he had Down syndrome.  Protocols for infants with Down syndrome are that they be assessed right after birth since the statistic is so high with respect to Heart defects.  I was told bring Hunter in within the week.  When we arrived, the doctor was kind and gentle with Hunter.  He sang to Hunter and talked to us as he did the ultrasound on his heart.  When he told us that Hunter had an 8 mm hole called an Atrial Septal Defect or ASD, I was really quite surprised and stunned.  It wasn't considered a small hole.  He went on to tell us that Hunter also had a bicuspid valve meaning he had two valve flaps instead of the typical three or tricuspid.  (Incidentally I found this sort of amusing since Hunter's Down syndrome gave him an extra chromosome which made a trisomy and here in his heart, one valve flap was missing making a bicuspid.  Perhaps the term amusing isn't the best but it was just so ironic!)  The Bicuspid valve was not really related to the Down syndrome and we were told it was more likely a congenital birth defect (meaning from either myself or Daddy.)  The doctor told me that the hole likely wouldn't close on it's own because it was over 5mm and holes between the upper chambers (ASD) were less likely to close when large.  A large hole was defined as anything greater than 10mm.  The prospects were that Hunter may require surgery by the time he was 3 years old in order to close or patch the hole.  The valve was another story, something that would not affect him in his childhood but would likely require repair or replacement by the time Hunter is 50 years old.  The doctor told us that we could watch the hole and revisit in 6 months to ensure it wasn't worsening.

At the 6 month mark (March 2010) Hunter had his follow up visit.  At that time we were told that Hunter's ASD had closed to nearly 2 mm.  I was estatic!  We had certainly not discounted the fact that a spontaneous closure could occur, but we just didn't think that it was likely.  So upon being told, we were over joyed.  At that visit the doctor suggested it was most likely that the hole would completely close on it's own.  As soon as I returned home that day, I posted a journal entry about it.  I also knew that everyone would want to know what the situation was in the next 6 months following that last visit.

Which brings us to today.  Hunter had his one year follow up visit, and lo and behold - the hole is no longer!  This is fantastic news!  Hunter's doctor showed me the area where the hole originally was and remarked how if I remembered what it looked like with the hole.  (Something I vividly recall seeing at his first visit.)  He showed me the same spot and how the hole was no longer there.  Interestingly enough, the doctor also commented:  "Isn't it amazing?"  I found this comment remarkable, since it showed me that even doctors - who tend to know medical science better then most people, still have room for little unexpected moments of what the human body is capable of.  The surprise isn't that the hole had closed, as many ASD's do close spontaneously but they usually the ones that do are small (under 5 mm).  The fact that Hunter's hole, being 8 mm was considered 'medium-large' and still closed was what we found amazing.

It just goes to show and constantly remind me how super this little boy is, inside and out.  I do know that Hunter has been seriously lucky when it comes to his health, and I hope and pray that it continues to be this way throughout his entire life.  I understand that his bicuspid valve will probably require intervention when he is much much older, but who knows what medical advances there will be in 50 years!  The fact of the matter is, heart surgeries are such a routine surgical operation since it is the most common congenital birth defect of all possible defects.

I had planned to share with you all about our day at the CNE, but the heart update was far more important and remarkable.  But, for interest sake a small version of our day at the EX is appropriate. 
On Sunday, we did visit the Exhibition.  And a milestone it was.  We visited all the buildings, saw all the newest and coolest inventions.  The best part of the day by far was meeting a few people who I got talking to about Hunter having Down syndrome.  Being the advocate that I am, I always enjoy talking to people about Ds.  A kind older lady who worked with children who had delays talked to me for about 1/2 an hour about some interesting sound techniques.  A younger woman in one of the invention booths went on to say how we were so lucky to have him because "they were always so happy, no matter what".  A little education and explanation to her went a long way to dispel some myths she had about Down syndrome.  I never look negatively upon people who have stereotypes about Ds simply because, often they just don't know!  I do look at it as a way to educate and share with the world what I try to do every day - and that is sharing positivity.
Hunter did prove to be a good little trooper despite the temperature being one of the hotter days on record, 33 degrees Celsius (91.4 Fahrenheit), lots of water and juices to drink and of course later on some dinner and milky.  By the time we were ready to go home I realized that we had not even won Hunter his first stuffed toy from the EX.  So like the diligent parents that we are, Daddy and Mommy boldly stood up to play a quick game of water gun races.  Thank goodness Mommy is a police officer and her talents at shooting (a water gun no less) at a target to make the object race, is not out of her league.  I have to admit, it would have been quite embarrassing to have lost, but seeing as how it was just Mommy and Daddy playing, the odds were definitely in my favour!  Sadly, I only won a tiny purple seal stuffed animal.  The point of the win was NOT just to add to Hunter's collection of stuffed animals but to have his very first "carnival win" toy.  The real sad part to this story is that while we were playing and madly trying to win this toy for our son, he was fast asleep - and missing it all.   So, it is appropriate that I post a picture of my 'sad little win' here for the whole world to see....

Mommy won me a seal from the CNE... looks nice and big from here!
Until you see it's real size, but I am still happy and clapping for this toy!
And so we never forget, it is a "Carousel Softoy"...  24K series no less!
Either way, Sunday was great and today was even better!  And one last thing....
Daddy called today to say he won tickets from his favourite radio show!  This Saturday we are all going to Kayuga motorway to see jet car racing!  Yay!  Just like watching "Pinks" on television, but for real!  Hunter's first drag racing event (not to mention Mommy's too).  I guess we shall take more photos of that event too - providing I don't forget the camera this time!

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