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, June 27, 2011

My Journal - Week 96 (27Jun11)

What the next day brings....

Definitely different babies.  That's all I can say!  One of these good days I am sure I will look back and think to myself, I wonder why I ever thought that all my children would behave the same way or have very similar personalities.  Mr. Hunter and Miss Hayleigh are two worlds apart as far as personalities go.  Hunter was the most laid back little newborn.  Hayleigh is pretty strong willed and very demanding.  I laugh because it's like looking at John and myself.  John has always been laid back, and I have always been go go go (and on red alert).  It's not to say that Hunter isn't strong willed now, because he certainly is these days but way back when, he was so easy going!

Hunter.  Two steps forward, one step back.  When it seems that Hunter is getting a little comfortable with his emotions surrounding Hayleigh, we allow him more time directly with her.  When he tries to slap her or grab at her, we pull back the reins a bit.  Just today he decided to be sneaky, he hugged her, petted her head (ever so lovingly) petted her hand, only to lean in to put lips on her head and then try to take a bite while simultaneously grabbing her face with his left hand!  Thank goodness just last night I filed his nails....  Hayleigh made up her face (perhaps with complete displeasure) for just about one second then went back to her world of discovery and wonder.  Growing pains.  Completely expected, just tough to deal with.

In the meantime, since we were able to take a few shots yesterday (with a calmer Hunter) I have something to look at to remind me that sometime down the road, there will be calmer days ahead - or at least I hope so!

Here are the photos:

This is my new little sister, Hayleigh!

Ahhhh.  My mommy loves us both so much!

Humm, I wonder if she will bite my finger?

I wonder how long she's staying??

I guess it's going to be the four of us now!

It's okay mommy... I will try to help out - I'm just not ready yet!

Amazing.  Mommy still loves me no matter what!!  Mommy's know.

Saturday, June 25, 2011

My Journal - Week 95 (25Jun11)

One Plus One Equals CHAOS!

Given that it's been over a week since I last posted, there is so much to post!  Firstly, we would like to announce and introduce the newest member of our family, miss Hayleigh Ciarra Kaelan McWade!  Born 15th June 2011 at 8:51 am, at The Scarborough Hospital Grace Division, she measured 19 inches long and 7 pounds 6 ounces!  A heavy weight in comparison to her brother, who weighed only 5 pounds 14 ounces but was also 19 inches long.  Despite being heavier, she still managed to look smaller, tinier and daintier for some reason!

Compare here:
Baby Hunter - One Day Old 15 Aug 2009

Baby Hayleigh - One Day Old 15 Jun 2011
Or these two:

Daddy Certified 18Aug2009

Daddy Certified 17Jun2011

We have noticed a few differences in their looks and yet some obvious similarities (Thus our well known saying, "More alike then Different").  Their personalities however, are extremely different (despite Hayleigh currently only being a week old).  I always said, having Hunter first was probably going to be the biggest blessing since he was by far an easy baby to raise.  When I say he never cried, I mean he actually never cried.  He slept through the nights from the moment we arrived home from the hospital.  Miss Hayleigh however, manages to sleep through the day, and none of the night.  She definitely is strong willed, loud and lets you know when she isn't comfortable - as she should!

Hayleigh spent her first week of life (from the moment she was born) in the Neonatal Intensive Care Unit (NICU) due to some complications from her birth.  I underwent a planned C-Section but what was not planned was the fact that my back was so bad the anaesthetist was unable to give me a spinal (medicine used to numb the body in order to perform a C-Section).  The spinal was attempted three times without success, and then an epidural was then attempted three more times.  Unfortunately there was so much injury to my back that no spaces were able to be used.  The Anaesthetist advised me that there was so much scarring and scar tissue in the spaces of my vertebrae that it was impossible to do, and the only choice was to undergo a General Anaesthesia.  This procedure is reserved for emergencies because it needs to be performed with immediate haste.  It can endanger the mother and baby and the more exposure to the anaesthetic, the more of a chance that the baby could suffer respiratory distresses or other problems.  Along with my back complications, I had also hypoglycemia (low blood glucose which is one of my medical issues) causing the OR medical staff to have to give me two bags of dextrose with IV saline to raise my levels.  All of these factors would contribute to our daughter having her own maternal hypoglycemia and weight loss issues.  (These issues would not come to light until after our daughter was nearly lost (having stopped breathing on two occasions) due to what John and I (along with two other medical doctors opinions) considered an inappropriate treatment conducted by the NICU doctor.  Unfortunately, I can not comment much more about it at this moment on my blog since I have decided to launch an investigation into the NICU doctors actions.  My own family doctor has also asked me to provide him with a copy of my letter of complaint because he wanted to have it published in the medical journal for other doctors to read and learn from - with the hopes that it never occur again.

After a week of ups and downs, emotions flying from extreme to extreme, hospital to hospital and doctors office to doctors office, little miss Hayleigh is now home and doing extremely well.  Many people are asking how big brother Hunter is doing.  Well, despite all of our medical troubles one might think we would be given a bit of a break in that area.  Unfortunately, when it rains it pours.  My concerns started for Hunter with the leaving of home to go to the hospital.  We knew I would be staying a minimum of three days due to the section, and with that I worried how Hunter would deal with our absence since the most we had ever been away from him was a day.  We were not worried about his care since Hunter loves to be with his Grandparents at all times, but what would the outcome be?  Especially when he learns that there is a new girl in town....  I had believed that a slow introduction, visiting us everyday in my hospital room (first without Hayleigh present which worked out since she was in the NICU) for a few hours at a time and then with Hayleigh would work to our benefit.  Unfortunately, even with all the research and proper parenting I could do, nothing would prepare me for his drastic change in attitude.  His first contact with his newborn sister was one kiss and the slap to the head.  (Score one for Hunter....)  I guess there's only so much to be said when you feel there is someone new moving in on your turf which had been exclusively yours for the last 22 months!  But even with the most understanding Mommy, Daddy & Grandparents, Hunter further showed his displeasure by not only slapping but screaming to challenge with his sisters cries and something newer yet - biting.  Now, he has only bit myself once lightly, but with Daddy it had become a daily occurrence since we got home.  I knew that these behaviours were forthcoming since I had observed Hunter through various modes of frustration previously and I noticed Hunter slap his own legs as well as growl when things do not go as "Hunter Planned".  For now, we tell him it hurts (showing him displeasure seems to go a long way) then redirect his attention and show love.  It is slowly working and things are starting to go back to "normal" whatever normal is for us at this moment.  I certainly don't expect miracles and or for Hunter to be okay with a new baby immediately,
but as time moves forward and he is noticing that this new and sometimes screaming baby isn't seemingly leaving, he is noticeably more accepting, not screaming any longer, not throwing tantrums etc.

As for me, with all that has happened, I have had no time at all to worry about my major surgery, my pain (front and back) and other general life type things.  It's certainly not as if they don't exist (far from it in fact) but life has a funny way of taking what can be physically devastating and make it seem transparent while other important things are going on.  I can definitely say without a doubt, my physical healing time has probably been cut into an eighth of the expected time, purely due to the stress of our daughters health and our sons emotions.

One thing is for sure, despite our household being turned upside down and our norms being shaken to its core, Hunter continues to make milestones (whether they are desired ones or not...).  A few days back (Sunday last week to be exact) John came down with Hunter first thing in the morning to get him his breakfast.  While Daddy was in the kitchen preparing Hunter's meal, he suddenly heard banging on the Bunny rabbit cage.  Now there would be nothing unusual about this except the bunny's cage is not within Hunter's reach, so it was not a sound anyone would have expected to hear.  When John looked over to see why and how the cage disruption was occurring, Daddy met with a surprise.  Hunter was standing directly in front of the Bunny cage holding Daddy's laptop Mouse in his left hand tapping the mouse button with his right index finger.  If you can picture that one, it would be as if Hunter was trying to move the Bunny with the mouse, like on a computer screen.  This was just as hilarious as the time Hunter walked around our house with his toy phone in his two hands with his thumbs moving across the number keys (as if texting), completely oblivious to anything else.  (I wonder where he gets this stuff from??!!)  Now, it wasn't the "programmable" Bunny action that was the major surprise, it was how he had gotten over there in the first place.  In past attempts to get to the laptop or the bunny, Hunter has hoisted himself over the barricades we have in place (which he used to respect) only to topple over onto his noggin resulting in a loud thump and whimper.  But this time, not a peep.  So it was quite the mystery how he got over there without hurting himself, until tonight.  Here is a short video of how Hunter gets by the foot stool (poof) barricades....

And for the many friends and family who have asked, here are some awesome photos taken over the last 10 days.  Please enjoy and feel free to comment!  I could use the comments after all the stress!

My last home photo before the big day... 1Jun2011
Aug2009 - Comparably half the here with Hunter's pregnancy!

Here I am!!  Welcome me world - I am Hayleigh Ciarra Kaelan McWade!

Here I am just after my entrance to the world in the NICU.

Here's my Mommy & Daddy for our 1st picture together.

It's so different out here... It's colder & a whole lot brighter....

This is one of favourite NICU nurses Vitra.  She was so nice to me & looked after me a lot.

Here's Mommy getting me ready to go home (the 1st time) from the hospital NICU.

Here's Daddy relaxing with me (finally home).  Aren't we comfy?!

Mommy & I are so happy relaxing.  We are leaving the hospital tomorrow!

This is my new pouting "I'm not amused" expression.  I wear it well, don't I?

But this is a better expression - It's my fifth smile but 1st time caught on camera!

Again, here we are relaxing.  It's such a tough life... well maybe a little for Mommy & Daddy

See my curls?!  Mommy tried to hold off cutting but in the end she couldn't take it & buzzed it!

So much to say - so little time to do it all.  I still have many videos that I have yet to upload and post to my blog, and I have had many demands to see Hunter's swimming progress.  As I find the time, I will get them on here, I promise.  Have faith in me - I will get there!  For now however, please enjoy the photos and I will also work on getting a Big Brother/Little Sister photo as well.

Saturday, June 11, 2011

My Journal - Week 93 (11Jun11)


For all my readers, all my friends and family.  I am alive, well and truly sorry for not posting more often.  I have had many many emails asking if I am okay, and I am certainly not surprised that people are asking.  After all, posting nearly daily, and then weekly - people were bound to wonder what happened to Sandi when not a single post was made for nearly four weeks!  The good news is, I am absolutely fine, physically I am well for a 39 week pregnant mom with extensive back pain and extreme swelling in my limbs.  I suffered quite the scare after having stopped one of my medications (blood thinner called Lovenox) which I was required to take twice daily after discovering my very own double dosed genetic mutation called MTHFR or Thrombophilia.  For a few weeks after stopping my blood thinner injections, I suddenly discovered that my right leg was swelling more than a little tolerable bit, and was feeling a horrible amount of pain in the back of my calf.  Worried that I might be suffering with a DVT (Deep Vein Thrombosis) or blood clot, I nearly went into panic mode.  A DVT that dislodges and travels to one's lungs can be fatal, causing a pulmonary embolism.  This kind of problem is one of the concerns a person with thrombophilia must be aware of, especially during pregnancy.  It seems after many visits to my two doctors that it isn't likely that it's a clot.  So, for now I am relieved.  And I will be further relieved after this upcoming Wednesday, when our newest addition to the family is expected to arrive via scheduled C-Section.

The past four weeks has been extremely busy with respect to Down syndrome!  Besides running my bi-weekly YMCA Play to Learn parent/child support-play group, I have been working night and day preparing, creating and finally distributing the Durham Down syndrome Associations brand new Newsletter that I have been put in charge of.  My official title, Executive Director of Resources, Memberships and Newsletters has definitely added to my already busy and chaotic life, but I love it nonetheless.  The executives and I have been meeting often and working hard to ensure that we meet the needs of the many people in Durham, Ontario.  I am proud to say, I have been able to reach many new families and bring them awareness of our Association and also provide them with the resources and support that they so very much deserve.

On top of creating a brand new Newsletter, I am also the new Webmaster for the DDSA's website, which at the moment is in need of a fresh new look.  I invite everyone to take a look at the Newsletter that I created, for Summer 2011 edition.  This new bold newsletter was distributed to every member via Email, Postal mail or while at our last Meet & Greet open General Meeting.  The Newsletter will be issued quarterly (seasonally) and will always be posted to the website for anyone to view.  The website can be found at, www.ddsa.ca  AND I am also posting it here:

Finally, because I had not posted a blog entry for sometime, many have been asking about Hunter's swimming progress!  I am happy to report that swimming lessons have been going fantastically, and I do plan to upload his newest swimming lesson, just as soon as I install the Sony Software to my new computer.  I recently purchased an iMac (yes, dare I say it - I have left the PC world and joined the small crew of people who enjoy MAC products).  I just want to say for the record, I wish I had switched to a MAC a whole lot sooner than this past month.  If you are a creative person, and love to work on web designing, photo editing, movies etc., there is no reason to stay on a PC.  I have never had such an easier time working with a computer than these past few weeks.  Honestly, working with Apple products has been such a treat and so much less stress than all my previous years on a PC - but it's not for everyone.

I will close this moderate length of a post with a few photos of Hunter - since it has been quite a while since anyone has seen anything from "Our House"!!

I'm getting ready for my buddy Vaun's birthday party!

Here were are, the three musketeers!  I am so happy to be with my two buddies!

Daddy, Mommy & I at the Toronto Zoo!  What a day!  So many animals....

Daddy & I sitting down having a break (at the Zoo).  Poor mommy, she's tired too!

Mommy is brave!  She's got Hayleigh inside, me outside and it's hot!  But she still looks happy!

This is my new shower!  Mommy & Daddy had it specially designed for us! 

Mommy and Uncle Ollie are hugging me up!  I love my family!

Here I am at the Brooklin Fair!  This fair was on the 5th June - we went with Vaun & Haedyn!

Wow, this is the best day ever... I got to eat Daddy's chocolate Ice Cream!!

I am such a cool boy!  I didn't ride the rides, but I got to play in the park at the Fair!

Check me out on this one!  It's a USS rocket ship!!  Don't I just "rock" it?!!

So, without fail - I think everyone can see it has literally been one thing after another this past month for this family.  The photos show we've been busy having fun, but honestly with a renovation of our bathroom, a downed Air Conditioner that had to be fixed right in the hottest of days, and our newest problem - a leak coming from the newly renovated bathroom destroying our ceiling in our dining room... (which required our contractors to return and attempt to fix the leak....) it's been one crazy month.  Somewhere in there I have had little to no time to prepare for our new little addition - Hayleigh.  But one thing we are proud to announce is that we have (finally) finalized her full name:  Hayleigh Ciarra Kaelan McWade.   So, as this week ends and the new week begins, I am sure I will become more anxious for her to arrive.  In my next post, I plan to zoom in on how Hunter has been handling all the recent changes, the milestones and newest behaviours!

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