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, August 30, 2010

My Journal - Week 54 (30Aug10)

All the projects go round and round... 
Or - at least make MY mind go round and round!

I feel so badly, I am sure many of you have noticed my blog has taken a back seat for a few days here and there while I attempt to work on and complete many of the projects that I have undertaken.  With that in mind, I figured that I should tell the world what I have been working on!  Mind you, the list actually helps me to remember what I need to focus on, and what else is left to complete.

The projects:

  • "Welcome to Our House"  (Our Down syndrome Journey - The First Year) - The 250+ page book of our first year.  This is and has been the number one reason for my blog.  I am still currently writing this book....
  • "I Have Down syndrome, What Does That Mean?" - This is the 2nd book I have written.  It is a children's book specifically about Down syndrome for anyone curious to know about Down syndrome.  I have finally completed the publishing aspect of this book and I have received my shipment from my printer.  I am now in the process of shipping this book out.  Orders can be placed from my "Sandi's Publication" page here in this blog or through my new websites when they are up and running.
  • www.welcometoourhouse-ds.com   /  www.welcometoourhouse-ds.ca "Welcome to Our House - Ds"  This is my new website where you will be able to find positive information and resources all about Down syndrome.  Putting together this website has been a huge undertaking.  But it's coming along.  I estimate my new websites being ready in about 2 weeks.
  • Stories and Photos  -  I have requested short stories of discovery regarding Down syndrome diagnoses from everyone and anyone willing to contribute.  I have requested these stories & photos from many support sites and from members of the DSAO.  These stories and photos are going to be added to my new website, and also as a final chapter to my 4th book, Welcome to Our House.
  • Down syndrome Conference DSAO (Niagara Falls Ontario 15-17 October 2010).  While my focus to attend this conference is primarily to gain information and resources, I am also promoting and selling my book while I am there.  I have paid for an Author's Booth at the Conference, so I hope to do well.
  • Down syndrome Awareness & Advocate Ribbon Magnet.  As a Canadian mommy who has a son with Ds, I searched locally high and low for a Ribbon magnet and could not find one.  I decided that instead of re-purchasing more magnets from elsewhere, I would design and make my own!  I hope to have this ready for the conference to sell, but I will also be selling them from my new websites once it is up and running.
  • Graphic Logo Licence Plates in Ontario.  The Ministry of Transportation Ontario (MTO) sells over 100 different types of graphic logo licence plates from sports teams to charity organizations.  I have contacted them with the hopes of adding my newly created Down syndrome Awareness/Advocate Ribbon Design.  If I can get this done, advocates all over ONTARIO will be able to order their own Ds graphic logo licence plate.
  • Market my first two books with Chapters/Indigo for sale.  I have recently signed off my first book, Charlie's Adventure with Amazon.com/.cs and Barnes&Noble.com.  I am told that Charlie's Adventure will now be able to ordered at the most popular Online retailers around the world.  The unfortunate part is that currently, the online distribution only will print soft cover.  I am hopeful that at some point they will print my books in hardcover, the way they were meant to be sold.  Availability of my book from those online retailers should be in about 4 weeks.  Fortunately, everyone can order the books (at a lower price) directly from me through my "Sandi's Publications" page here in my blog, and also on my new website, www.welcometoourhouse-ds.com & www.welcometoourhouse-ds.ca - coming soon.
  • Parent/Child support & play group - for children with special needs.  I decided back in November 2009 after attending various play groups for a few weeks, to ask the YMCA Ontario Early Years Centres if they had any groups for children with Down syndrome.  They told me they did not.  I decided that this was a group that needed to be created and run.  Apparently the YMCA agreed with me and suggested I be the one to create and coordinate one!  I have been working with them since that time to get this new group running, which will start Fall 2010.  My last meeting with them to finalize details will be this 7th of September.
  • Parent Support Guide - Appointed by the Genetics Clinic at the Rouge Valley Health System Hospital in Toronto,  I provide support for parents who receive prenatal/postnatal diagnosis of Down sydnrome.  My name and phone number is given to families who receive a diagnosis, who may want to talk, ask questions or find themselves in the very same position I was in when I received my son's prenatal diagnosis of Down syndrome being 18 weeks pregnant.  It is something I know many parents do not consider doing when they first get the diagnosis, but later wished they did.  It truly is an eye opener to talk to someone who is in the shoes you may have to wear but are afraid to.  The contact with a support person helps you to discover things that no book or article can tell you.
  • MedHelp (www.medhelp.org)  These are supports I do on a daily basis.  MedHelp is a medical resource & forum website that approached me to ask if I would be the Community Leader of three of their forums.  Down syndrome, Genetics and Children - Special Needs.  I provide resources, information and support to anyone who needs it through the forums or via private message.
I am sure that I have missed a few things here and there, but these 10 things are the most important projects I am currently working on.  Now that I have typed them out, I see why I am exhausted!  Everyone asks me, how do you do all of this?  The short answer is, I don't know!  I just work, work, work.  Not to mention, Hunter always comes first.  It is definitely why I am up most nights until at least 3 am.  I find it very hard to work on my projects (even in small amounts) during the day.  Obviously Hunter's activities, such as learning, playing and early intervention therapies are my primary focus, so once he goes to sleep (nap or bedtime), I work on my list of projects.  But, I always remind myself - it is for Hunter that I do these things.  Not one of these projects are for anything other then Hunter or Down syndrome.  It is my personal way of giving back and advocating for Down syndrome.  If you can believe it, I also gave some thought to creating a Down syndrome Foundation or Charity - but I am told that it is a huge undertaking.  My mother tells me that it is not easy (as she volunteers all of her time to Kiwanis and has been a past president and is currently the treasurer or secretary... I am not sure - it changes yearly) but I believe I can do it.  I usually am able to do whatever I put my mind to, so like all the other things I have done so far, why can't I do a foundation or charity organization? 

Anyway, I think tomorrow or my next post I will spend more time talking about Hunter bunny, as yesterday (Sunday) we spent the afternoon at the Canadian National Exhibition.  I did forget my camera (shame shame on me) if you can believe that, so you will have to suffer with my descriptive rendition of the day.  It is a milestone for sure, as it is for any Canadian Child (more specifically children in the Ontario area) who visits the CNE for the first time.

Monday, August 23, 2010

My Journal - Week 53 (23Aug10)

How many teeth do you think I have now???

Since I discovered Hunter's first tooth, I made it a point to bush, every night.  Because of the nightly brushing, I know right away when new teeth come in.  It has been a long time since I posted anything about his teeth, and I often forget to update people on the newer teeth.

About a week ago I realized Hunter sprouted two new teeth.  But they definitely were not the ones you would expect to see at this stage.  Originally, Hunter first sprouted his bottom two front teeth, then next his top two.  After that, he grew the top one on the right next to his front two.  For a long while it remained at five teeth, until last week when I noticed that he had sprouted the two new ones I just mentioned.  The two newest teeth that came in are his upper molars!  Now, I do know that for babies and toddlers with Down syndrome, teeth can come in - in any order, smaller sizes and crazy sharp or jagged shapes.  Hunter's bottom teeth were definitely more pointier then what you would call usual, yet his top front teeth look completely typical.  At this point, I can't really tell what the molars are going to look like, but they are definitely sharp.  Now, having seen that new discovery a week ago, and brushing his teeth tonight, I just discovered another new tooth!  Finally the left tooth next to the front top two has come in.  Wow!  Hunter now has a total of eight teeth.  The funny thing is, six of the eight are on top, leaving only the two front teeth left for the bottom!  No wonder he can chomp on all kinds of foods (and my fingers) so well!  I hope they will even out a bit, maybe add a few newer ones to the bottom?

Maybe soon I can get a picture of his new teeth... but I can't make any promises!  Every time I open his mouth, he expects me to brush his teeth, so if I do get a nice picture, it will probably consist of teeth brushing! 

Parent/Child Support-Play group update:
I promised an update regarding the Parent/child support-playgroup that I am creating with the YMCA Early Years Centre.  I have an upcoming meeting this Thursday (26 Aug) to finalize details for the fall program.  The group will run out of the Pickering YMCA Early Years location.  I thought to post, if anyone out there is interesting in joining our group, but has any questions that they would like us to talk about during our meeting this Thursday, feel free to send me a message or leave a comment post.  We will be talking about frequency of the group meets, the objective of the group, the services that will be provided, and any potential training for the staff at the YMCA.

Friday, August 20, 2010

My Journal - Week 52 (20Aug10)

Look at me, I can wave at you!!

I wanted to share yet another milestone with everyone!  Our son is finally waving!!  We have been waving Hunter's arm and hand for as long as I can remember, but yesterday during bath time, Hunter looked at himself in the mirror and all on his own waved hello/goodbye to the baby in the mirror!  This was not a mistaken wave, it was definitely an appropriate real wave!  I thought to myself after the mirror wave, maybe it was a one time thing, but lo and behold, today Hunter spent the day waving at me and anyone who would pay attention to him and wave back!  And just as we would wave back to him, when we would start off with waving at him at another times, he would respond by waving back!  The cute thing is, since we would clap joyously for the waving, Hunter seems to have learned that along with waving comes clapping!!  What a smart cute cookie!

I took some videos of Hunter clapping, then waving, then a combination of the both!  Enjoy!




Isn't this great?!  I am glad that he is able to put these actions together with the words, and also that he knows exactly what to do when those words are said!  So much fun!

Wednesday, August 18, 2010

My Journal - Week 52 (18Aug10)

I Have Down syndrome, What Does That Mean?

Publication UPDATE:

Many of you know that I have published some books, and my latest publication, "I Have Down syndrome, What Does That Mean?" is just about ready to ship.  I originally posted that I had a discounted promotional price for the book which was available until the 15th of August.  I wanted to update everyone to announce that I am extending the special price until the end of August.  Anyone who orders the book before September 1st will receive the discounted promotional price.  I have had a good response with orders and I hope that I continue to receive more. (All orders are directed through PayPal for everyones security.)
To order/purchase my latest publication -  "I Have Down syndrome, What Does That Mean?" see links:

or in my publications page:   

And if I can complete my new website in time and get it ready before the shipment arrives, you can also order from that site:  http://welcometoourhouse-ds.com or http://welcometoourhouse-ds.ca
Officially I just heard from my publisher who called to advise me that there was a printing problem with my books and because he wanted to ensure that my books were of the utmost highest quality, he had the printing redone.  This changed the shipment of my books to the 25th of August instead of the 18th, which was today.  With that in mind, I have extended the promotional price.  So, this little delay for me may be putting me out a few days but will be your good fortune should any of you plan to order the book this week!

Also, I am still open to receiving submissions for my fourth book, and my new website "Welcome to Our House".  If anyone is interested in still submitting for the fourth book & new website, I do require those submissions ASAP.  I currently have over 40, but will accept more for review and possible inclusion until the end of this week.

Sunday, August 15, 2010

My Journal - Week 52 (15Aug10)


I have so much to say about Hunter being one year old but I think I will save that specific journal entry for tomorrow.  Today, I want to post how wonderful Hunter's first birthday part was, how much fun we had and how great my little boy was for his birthday party.  Hunter officially turned one year old on Sunday the 15th of August 2010 at 3:00pm.  We held his birthday party on the Saturday (a day early) to make it the most enjoyable celebration ever, and specifically so that people could stay as long as they wanted without having to worry about getting up the next day.  Even Hunter stayed awake until our last guests left.  Hunter was so happy and well behaved that not even a single tear was shed, and he had lots of clapping, pointing, smiling, laughing and baby tricks to show everyone.  Collectively I took 103 pictures of his birthday, (no surprise there) but I am only going to post the more special ones - even though I feel all of them deserve an equal glance.  I think I will put the photos into a montage slide show with music, and I will post that in my next post where I will also sum up the year.

For now, I hope that you will enjoy the photos I have chosen to post.  While there are actually more photos, I have posted 43 here.  Hunter's Aunty Melissa and Uncle Jimmy took some in addition which I will also post when I receive them.

I just had my bath before my big birthday party... It's 2pm and it's T minus 3 hrs and counting!
Don't I look fresh?  Daddy and I have to look really good before my guests arrive!
Do you love my hair do?  I am now all ready for my party!  It's 5:00pm!  Let the party start!
Wait, what do you mean I am turning one?!  NOBODY told me I had to get older for this party!
Well, I feel better about it, Mommy said there will be cake and presents!
Really?  I get money for my birthday?!  I love money....!
Ohhhh, Mommy says that money can buy me lots of things!  Ohhhhh!
I think that I will put it into my bank account.  My mommy taught me well.
Well, I have good manners, Mommy & Daddy taught me to applaud to say thank you!
Mommy is making the "thank you" speech, & I am still trying to tell everyone how much money I just got!
This is a picture of my birthday cake before it got eaten all up!  It says "Fun to be One!"
I am clapping along with everyone while they sing "Happy Birthday to Hunter"!
Whoa, did you notice my cool birthday hat, bib and shirt?  Fun to be one!
But Mommy, I don't know how to blow out the candle!  What exactly is a candle anyway?!
Okay Daddy, you cut the cake for me!  I am much too little to use a knife!
So, this is cake?  It feels funny... How am I supposed to eat this thing?  Where is my spoon?!
Yummmy!  Oh that tastes so good!  This is nothing like my baby food!  What have I been missing?
But Mommy, you always say don't touch my food with my hands?!  Now you want me to use my hands?
Okay, I will grab it just like you say to do.  It's really squishy though!
Ahhh that's better, it's easier when someone feeds me.  Less messy!
Check these things out!  I have no idea what they are, but they sure are fun!
Time to open the presents!  This is a great party!
This cool outfit is from my Uncles Oliver & Greg!
And here is the card that goes with the outfits!
YAY!  Uncles Ollie & Greg also gave me a new Nuby cup!  And it's blue too!
"H" may be for Hockey, but really it's for HUNTER!  Thank you Unlces Ollie & Greg!
Uncle Andrew & Aunty Raji gave me a gift card for Children's Place!  I love it!
Aunty Jane & Uncle Lester used this cool Nerf ball as a bow!  Perfect for my little hands!
And such cool wrapping paper for me to rip!
They also got me a nice 2pc outfit with a Babies R Us gift card!  I love them both!
This cool card is from Aunty Lesley, Jamie-Lynn & Leah.  It's Elmo!
WOW!  Look what's inside!  Is that really a $50 dollar bill?  I've never seen one of those!
And here is the $25 from Great Uncle Olroyd.  Mommy says I have to put it in my bank account!
Here is my card from Aunty Melissa & Uncle Jimmy.  It has a Chinese Red Envelope!  More Money!
And Aunty Melissa & Uncle Jimmy got me this cool Chuck Truck!!  It has a motor!
I love this truck, it looks like Mommy's Chevy Avalanche!
But nothing beats getting a ball that I can hold with my very own hands!
Now, I bet you are wondering what Mommy, Daddy & Grandma & Grandpa got me....
I will give you a hint...
It's not a car, or even a house, but it's kind of close...
It's a giant swing, fort and play yard!!!
Which took my Mommy all week to build for me!  (With some help of course!)
Okay Daddy, stop taking pictures and let Mommy push me so I can enjoy my present!!
Thank goodness the swing was finished in time for Hunter's actual birthday.  I have to say though, planning the party, building the play yard and trying to get my websites done as well as my book has made for an exhausting couple of weeks.  Time has just flown by and I really can't believe that our son is now one year old.  This journey has been so wonderful, and really even though the 15th of August technically ends my journal for my fourth book, "Welcome to Our House", it really is the beginning of another chapter in our journey.  And with that in mind, I will obviously continue to update my blog for our never ending journey.

I will address my blog entry for the end of this year in my next post.  I want to sum up my thoughts, feelings and emotions surrounding an end to this first year.  I hope you have enjoyed this year as much as we have, and that you will continue to follow us on the next stages of our lives.

Sandi, John & Hunter  - 15th August 2010

Thursday, August 12, 2010

My Journal - Week 51 (12Aug10)

Who knows noeses better than Hunter knows?

First, I need to apologize for not posting as often as I normally do.  It has been a hectic week - I have been working like crazy trying to organize all the submissions for my book and website, plan for Hunter's birthday party and organize the construction for the monstrosity of a swing/play fort outside in our back yard (our birthday present to Hunter).  Not to mention, the most important task as always, taking care of a nearly 1 year old baby boy who is over actively exploring and learning so many things each day!

Today our Early Intervention superhero (and my friend) Jenn, came over for a check up visit on Hunter.  She has been having Hunter withdrawal since it appears Hunter doesn't need much "intervention"!  I love posting things like this because again, she and I spent our time catching up and going over all Hunter's accomplishments, and getting Hunter to show off for her.  Jenn makes my day (just as Hunter does by being so typical) with telling me, Hunter doesn't need any intervention!  He is developing typically, right on track with typical development.  She asked me if there was anything I felt that I would like her to go over or do, and honestly - since I know that Hunter is on track perfectly, there wasn't any thing I could ask of her.  I even showed Jenn how Hunter has learned body parts, most especially "the nose".  I told Hunter to show Jenn nose, and he pointed right at my nose.  (I do have to admit, we are having a bit of difficulty with Hunter pointing to his own nose, but I know it's only because Hunter can't see his own nose!  And a mirror lesson would probably help!)  Next Hunter sat on Jenn's lap and when I asked him to point to her nose, he diligently did.  That afternoon I introduced mouth, and now on command Hunter shows me "nose" and "mouth" properly and even if I mix them up, or randomly ask, he correctly points to the right one.  I can't help but be so proud.  I only taught him mouth in one afternoon, and he has been perfectly identifying the nose and the mouth.  Hunter is also very excited when it comes to walking, and we have been trying our best to accommodate his interest in this new method of locomotion.  He wants to do it all the time, but at the moment still needs help with balance.  While he can stand up holding onto the furniture, cruising the furniture is slowly coming along, and that is something that we are working on to help him gain confidence.  One thing that I noticed (ever since Hunter was tiny) is that Hunter can do everything he puts his mind to, but wont do it until he is absolutely sure he can do it.  He always is able to do things that we want him to do, but his own confidence sometimes stops him from trying things by himself.  So, since we know this we work around it and find ways to help him trust himself.
I have taken a few cute (yes, always cute) pictures of Hunter just being Hunter.  I hope you all enjoy these, because tomorrow, we will be having his birthday party and Lord only knows I will be taking a boat load of pictures and videos of this monumental event/milestone!

This is my E.I. Jenn.  I love her very much.  She helps me learn!
You want me to do what?  How about I show you my drum??!

I love cuddles, and with Jenn they are even better!
I love my chair mommy bought, it feels so nice and "touchably" soft!
I am loving this T.V. thingy.  (Don't you just love how I took over Mommy & Daddy's room?)
That's right, I watch The Steve Wilkos show with my Mommy in the afternoon.  I too am a fan!
I finally get to pet Mommy's other cat named Smudge.
Ohhhh, I know what you mean kitty, I love being patted too!
And one last thing, yes Hunter is a huge Steve Wilkos fan at under one year of age.  If you didn't believe it before, now you have picture proof.  I guess Hunter just knows good police officers when he sees them.  (Even if Steve Wilkos is retired!)
Stay tuned for first birthday pictures tomorrow!
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