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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Thursday, July 28, 2011

My Journal - Week 100 (28Jul11)


One thing I noticed when Hunter was born was how quickly time flew by.  It appears when you have a second child, time flies by two times as fast.  I can hardly believe that Hayleigh is 6 weeks old as of this Wednesday.

Website updates:  My website www.welcometoourhouse-ds.com is up and running and has been doing well.  It appears many people are visiting and using my resources.  I have also added an Icon to the tabs to show how unique my site is.

Durham Down syndrome Association updates:  28th August is our Family Picnic date!  Join us at WindReach Farms 12-4pm for loads of fun, activities and BBQ.  Hayrides, Petting zoo, Farm Animals, Stables, and Sensory room - plus family acitivities!  How could you not want to come!  All DDSA members can enjoy the event for free (entire household) and guest adults pay $4 and children outside the members household are $10 each.  Feel free to bring other family or friends.  RSVP to me before 15th August if attending.  Also, the next DDSA General Meeting "Meet & Greet" is 14th September 2011 at 7pm (Iroquois Sports Complex Garden Cafe, Whitby)

Hayleigh updates:
She now weighs 10 pounds!  What a cute chunky monkey!  She no longer needs supplementing (that's for sure...).  She still suffers with gas - I could call it colic... but what's the point.  Let's just call it what it is.  I'm used to it, having gone through it with Hunter, it makes me believe my breast milk has higher than normal amounts of Lactose (which foremilk is naturally full of and both Hunter & Hayleigh would fall asleep before getting the rich (less Lactose filled) Hindmilk).  Gripe water seems to be our best friend these days along with Oval.  Not to mention both my children are lactose intolerant as is our whole family including Daddy....
A red mark I noticed on Hayleigh's upper back (which I thought was a scratch/mark she aquired in the NICU somehow) turns out to be a birthmark (which I figured after 6 weeks must be) called a "stork bite" or more medically known as a Infantile Hemangioma.  These marks usually are superficial and do not require any treatment and are not health issues.  Luckily, Hayleigh's mark is so small and looks more like a scratch AND is is a location that is not obvious (on her back) that it wont cause her any grief.  Many Hemangiomas can appear on the face and extremities and as a result can cause life long emotional scars.  The good news is, (not that she really will be affected by its location though) is it can disappear by the time she is 18 months old BUT sadly the flip side to that is, it can grow to a larger size - which would happen from the 3-9 month time frame.  I will have to keep a diligent watch on it.
Hayleigh's stork bite (Infantile Hemangioma) oddly enough looks like a swan!

Hayleigh smiles everyday!  While Hayleigh (like Hunter, smiled and laughed at the age of only 2 days old) she continues to smile on a more regular basis now.  When she gazes at me and I smile at her, she will smile in return and coo.  She loves to do this, when she is not gassy and fussy upset.

Big toothless grin for my Mommy!

I smile when Mommy or Daddy smile at me!

Hunter updates:
Swimming is going really well.  It would seem that we are back on track.  The return to a more normal state (given that there is a new baby in the house) is showing at swimming.  Bonnie (Hunter's swim instructor) noticed this in his last lesson and has advised us that she will be starting him on his stomach next lesson!  How exciting!  I wonder how he will take that progression.  I had decided that a private lesson every other week with Bonnie (where Hunter doesn't have to be removed from the pool to wait until his turn and have 15 minutes straight with her) would be beneficial and it would seem that I was right.  He has had one lesson so far (private) and it was from that he seemed to make the most progress and was the happiest.  I am posting his last group lesson where Bonnie decided that he will move to his next progression.
Speech is coming along but is confusing for all of us at the best of times.  Hunter has his "clear" words which there is no doubt about what he's saying but then he also has his baby babble which he uses in long sentences with hand gestures and all!  On top of that there's his sign language, which he can be very lazy about using.  With the onset of running around, I know his language has somewhat taken a back seat - as it's far more interesting to run and explore the world around him rather than focusing on speaking.  I'm not worried yet about any delays per say but after his last EI visit with Jenn, there are definitely many things we can do to help him (not to forget) what he can do.

Things to encourage speech (and lessen his frustration):
1.  Set up a photo album with photos of his favourite or recognizable items (such as his shoes, ball, book, cup, juice, milk, food, favourite toy etc.)  Set up a second duplicate photo album with the same photos but labelled.  Ask Hunter to point to a specific photo.  Ask him to tell me what it is.  Post the photos on the fridge.  Ask him to point and tell me which food item he wants, or for example - Milk versus Juice. 
2.  Give Hunter new signs (sign language).
3.  Be patient and encourage him to speak or point out what he wants, discourage the negative reactive behaviours (like grunting or slamming hands down on tables etc.).

These are just some of the ideas Jenn gave us to encourage Hunter's speech along.  I keep in mind his private speech pathologist Jill, advised that Hunter is fine and needed no help at the time he had his assessment.  We do however have a group assessment coming up in September through "Grandview" which is covered by the Government, thank goodness as private speech pathology is quite expensive.
I am curious what they will tell us at Grandview and also curious what they will add or suggest to help if he needs or requires any at his next assessment.
Jenn and I are drawing on my report!

I'm just having too much fun to pay any attention!

Daddy and I are walking with Hayleigh at the park!
More to come - keep watching!

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