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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Saturday, January 28, 2012

My Journal - Week 126 (28Jan12)

New Feet for a New Year!

I know it's been a couple of weeks since I last wrote in my blog however I can say my only reason is "wind down" time.  Last month we decided to ask Hunter's Early Intervention therapist what we could do to help Hunter with his "walk".  Even though Hunter has been walking very proficiently since he was 17 months old, I have been finding that he is sometimes "tripping" over his won feet for lack of a more scientific term.  With hypotonia, ligaments and tendons are loose at the best of times and it's something that Hunter wont really grow out of but rather have to "manage" all his life.  Jennifer mentioned that we should have Hunter's feet viewed by a specialist through a "gait" clinic.  We took Hunter to see walking specialist Maureen Luther from Sunnybrook Health Sciences Hospital who made it possible for Toronto Orthopedic Doctors to assess and then make a prognosis for Hunter's feet.  It was decided that Hunter would require a special casted brace (orthopedic appliance) that would help Hunter achieve normal stability in his ankles and arches.  These special orthotic shoes (more like a foot brace) fit on his feet and then slip into shoes for a perfect fit.  The process however while simple and painless was daunting for poor Hunter who attended during a critical nap period of the day.  Imagine having your poor tootsies wrapped in casting materials, dunked in water and held firmly by unfamiliar hands.  Quite upesetting for a 2 year old.  A few thousand tears later, we were done and waiting one month for the perfectly custom "Hunter" moulded feet to be ready.

Yesterday was the day.  We returned to Sunnybrook, with a fresher happier Hunter (who didn't have to be pooked or prodded) to be fitted with his brand spanking new orthopedic appliances.  Did I mention that they allowed me to submit images (any one I chose) to be branded right into the material which made his custom feet?  Yes, being the photographer that I am, official "Mammarazzi" I supplied them with only the cutest "Hunter' photo I had which could be plastered all over his neat new feet. 

We met with Maureen and Chris (the doctor who originally casted his feet) and Hunter diligently allowed Chris to "fit" his new fancy feet.  I guess seeing his own photo on his new "threads" was helpful and partially responsible for his good-nature'd smiles.  We test drove "our" new feet up and down the halls with serious gusto.  (Sorry, I didn't manage to take any 'test walking' photos despite having my camera on hand.)  We were then instructed to purchase a new set of shoes to accomodate these new braces since his old (new) shoes would not accomodate the extra width and length of the braces.  That kind of sucked since I had just bought these great recommended shoes called Baby Botes from a store called Three Little Pigs.  (Those shoes, for the record are around $100 and are great if you can not get assistance to pay for these kinds of orthotic devices).  I know many of you might be gasping at the sound of $100 for baby/toddler shoes, but let met tell you why that isn't so bad....  The appliances we picked up today are not cheap.  While we get a 75% brake from the Canadian Government (called Assistive Devices Program) the 25% that we parents are left to pay up, is to a rude tune of $441.50.  Yes you read right, that is the 25% we must pay after Government discount - if you can call it that.  According to the bill, the devices cost $1766.00 Canadian Dollars.  No joke.  So, currently I am out this money until I submit it to my own personal work insurance plan.  Even then I am sure they only pay a mere 60% or some ridiculous menial amount.  Don't get me wrong, funding is available, if you qualify.  That though, is another story and includes a long waiting list....  Another post for another day.

But back to Hunter's new feet.  Immediately (once wearing his new orthotic braces)  I noticed a difference in Hunter's walking.  He was picking up his feet, striding much better and definitely much more stable.  I didn't think it would be "that" noticeable, but it was.  A lot can be said for those loose ligaments.  What I want to mention is that clearly, it is imperative that young feet get this kind of attention early.  The longer a parent waits to get "help" for their child's feet/walking, the more damage (permanent loosening) could potentially be done to ligaments and tendons that is or can be irreversible.  Here are a few photos of his new shoes and custom braces.  I guess the good (but hardly evening) point is that all future shoes that we buy to fit the orthotics (or accommodate them) we were told to buy from Walmart or PayLess Shoes.  There is (now) no need to invest in costly shoe "shells" to hold the braces.

These are the (what should have been dipped in 24k gold) orthotics!

Pretty snazzy, huh!

A closer up look at the nearly two thousand dollar braces....

Hunter is all over the orthotics - with some obvious "L" & "R" directions.

This is how we insert the inserts - only Hunter is in them first.

And a photo shoot of the new "Champion" shoes we picked out from PayLess Shoes.
Hunter loves his new shoes!

I always manage to say, 'watch for my next post' most times with the intent to post missing elements - such as a photo of Hunter running in his new orthotic apppliances but life often gets in the way.  So, I think I will aim for a general photo collage of the kids in my next post - since there are some really neat "mommarazzi" photos that I really would love for you all to see!  Think of this image, a cute Hunter wearing his new Christmas present (A toddler super cape) and a sweet Hayleigh asleep on Mommy after a long night.... To come.


  1. Hi Hunter

    My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are super hero, super trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. http://www.miraclechamp.webs.com I was born with a rare life threatening disease, and have 14 medical conditions all together. I love it when people sign my guestbook.

  2. I really get that comment about assistance from gov't. Our Buddy has been given a room and board allowance since he lives with us. It started at $728 monthly when he turned 18 and it's now $808 and he'd 38. Do the math. The increase over 20 years is a joke. The cost of food and shelter has risen enormously. Any clue how he can improve his income?

  3. Are you okay? you have not given any further updates and that is not like you.


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