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, December 26, 2009

My Journal - Week 19 (26Dec09)

Today marks Hunter's 19th week.  And it's the day after his very first Christmas.  I know he doesn't really understand what all the fuss is about, but he knew it was a big day.  Christmas morning we opened all our stockings, and Santa brought Hunter a few goodies.

[Hunter opening his stocking]

Next we tackled opening our presents, and Hunter actually helped open his own gifts!

[Hunter helping to open his own gift]

Hunter was so lucky to receive all the wonderful things he did, and here you can see him enjoying one of his new stuffed animals. 
[Wow, this is neat!]
And also his first musical instrument, guaranteed to drive mommy & daddy crazy!  (Go figure, we bought it....)
[Hunter playing a few notes]

Later in the afternoon we cleaned up a bit more as we were expecting family over for Christmas dinner, but Hunter took the opportunity to catch a little "reindeer" nap!
And after a scrumptious turkey diner that the whole family enjoyed, we opened our party crackers and wore our Christmas Crowns.  Hunter stole mine because green matched his outfit better than mine....
[Party cracker king!]


All in all the night was fantastic and Hunter was not shy with anyone.  He even went into the arms of someone he had never met before without fussing.  He did suffer with some gas near the end of the night, but nothing a bit of gripe water didn't eventually fix.  (10 minutes later....)
 
I was honestly afraid that Hunter would not sleep last night, but I am guessing all the stimulation tuckered him out.  He went down at 1:30 am and slept until 7:45 am.  Now me on the other hand, I went to bed at 4:00 am and didn't really exit my bed until 7:00 pm.  (Of course I was up at 7:45 am to feed and change Hunter, but we all promptly went back to sleep.)  I was able to catch a bit of a needed sleep during the rest of the day, and Grandma took up the slack, letting me get some much needed rest.  I feel great now that I was able to get some "real" uninterrupted sleep.
 
And so it goes, yesterday we closed another chapter to this story - Hunter's first Christmas.  It was wonderful and memorable.  And he made it so sweet for all of us.  Thank you to everyone for all the wonderful things given to Hunter on his first Christmas.

Thursday, December 24, 2009

My Journal - Week 18 (24Dec09)

It's only a word...

"Retard/Retarded"

So then, why am I so offended?  I had been meaning to post this journal entry quite some time ago, but every time I thought about it, I found a few reasons why I shouldn't and then later, even a few more why I should.  It never dawned on me before Hunter just how much and how many people say it.  To give some people credit, or rather, the benefit of the doubt - they, most of the time, don't realize they are even saying it and worse yet, exactly how offensive it truly is.  It's not actually the word that causes me so much grief, but the context in which people are using it - derogatorily.  "Gawd - he's so retarded!"  or  better yet, "I am such a retard".  I personally have always hated the term, and I can't help but notice just how it strikes a chord with me.  And it's not specifically because I feel that I am protecting Hunter in some way, (even if possibly I may inadvertently be doing so) but don't we all know some one who suffers with/from a disability of any kind?  Have we not outgrown the necessity to belittle people much less ourselves at the cost of others?  What upsets me most is that I find more adults guilty of this "bad habit" then children - and honestly, I would actually expect that I wouldn't have to explain this to an adult much less a child (who in all actuality probably doesn't perceive the negativity of it in the way that we do), and has likely picked it up from - you guessed it, an adult.

Maybe I am too sensitive, and maybe I am not sensitive enough.  But one thing is for certain, I am now sure I wont put up with people using the term derogatorily and I vow to at least not remain silent about it.

(Please vote on the poll regarding "retarded" - stats for my book)

And for those who believe it's just a word, why not use the more appropriate and less derogatory term, "Mentally challenged".  See link:  http://www.msnbc.msn.com/id/29981699/

Wednesday, December 23, 2009

My Journal - Week 18 (23Dec09)

Last night we took Hunter for his first "Santa" picture.  We knew we would probably have to wait, but we didn't realize just how long it takes to wait, especially when the mall takes free pictures & videos!  I suppose it wasn't too bad, we waited in line a total of 1 hour. 

[Hunter is bored in line waiting for Santa]

So, wait we did, and when we finally get up there, and I start thinking to myself, I hope Hunter doesn't have a melt down....  We were lucky to get a few pictures of Hunter alone with Santa, and a couple of family shots before the "melt down" occurred.  All I have to say is it's a good thing Santa's beard was not attached for real, or the handful that Hunter had, would probably have hurt!


[Hunter sitting with Santa, not too sure about it though!]


[Family pose with Santa - Hunter looking bewildered!]

Now I can say, we are officially done with "prepping" for Christmas.  All we have to do now is wait for the big day.  All the presents are bought, wrapped and all but four sets delivered.  (Which reminds me - Don't you want your gift Oliver?!)  I hope everyone will be pleased with their presents, and if by some off chance they are not, I'm sorry to say, Hunter picked them out....

If by some miracle I happen not to post anything before the "big" day - which I highly doubt would happen - (more like in case some of you do not get the chance to read any more posts before Christmas because you are super busy), Merry Christmas!

And just because every moment is a cute moment caught on film, here is Hunter exploring Daddy's face later last night after getting home from taking Santa pictures.....

[I got your nose & chin Daddy - it's not white like Santa's...]


Monday, December 21, 2009

My Journal - Week 18 (21Dec09) Evening

What a hard workout for Hunter.  Although a little disappointing (we found yet another "problem area" in Hunter's core/trunk) we are determined to work hard to help Hunter strengthen these muscles.  Hunter is getting severely locked up which is causing him to crunch over to the right, almost looks like he has a really bad case of scoliosis.  Kay worked him out for a long time, and once again was able to release a record 8 baby farts!  And is it any wonder why Hunter had been suffering with gas?  We will obviously have some more appointments to adjust Hunter's kinks.

On a warmer, cuter note, I just wanted to post a couple of pictures of what it would look like to be loved unconditionally by your baby. 


[Mommy, come closer!]




[Closer Mommy!]




[Okay, I kiss you!]

Here, Daddy caught Hunter "grabbing" my face and pulling at it for a kiss.  So what's a mom to do?  Comply of course!

My Journal - Week 18 (21Dec09)

Alright, so I am an official dummy.  Many of you have heard me complain that Hunter is or was taking longer and longer to get down for his bedtime.  It used to start promptly at midnight, every night, like clock work.  You could have set your watch by Hunter's bedtime.  Then, somehow, (and slowly) he started to have his last nursing session at midnight, and that too became a "scheduled event".  And eventually, bedtime became anytime after midnight, and sometime before 3 am.... How in the world did this happen?  Okay, so I am mostly to blame for these late night "owling" sessions... and poor Hunter, none the wiser, just thought that he was doing mommy a favour by staying up with me???  So last night I had a daring inspiration - seeing as how we have a E.I. appointment early this morning (and that is something most of you know don't work well with me - the word "early" and "Sandi" are not even nearly synonymous) at 8:30 am, which means getting up at 7:00 am.... As usual, Hunter was in no mood to fall asleep on his own at or near midnight.  Quite chatty, I figured, we would start this evening off a bit different.  No more morning baths.  This should be an evening event, why else would they have named a baby wash "baby bedtime" etc. 


[Hunter in the bath - nice hair!]

This would be the "prep" for making Hunter all relaxed and ready for possible sleepy time.  And, if no luck there, next would be baby cereal at 10:30 ish.  Goal?  Fill up belly and make baby even more sleepy....  And for the grand finale, the newest and last step - why not just put him into his crib, turn off the lights, close the door and actually use the really expensive baby monitor with the "night time vision"???  Are you kidding me?  This actually works?  No sooner than I had put him down, did he promptly go - to - sleep.  And sleep he stayed until I woke him up at 7 am.  I am beside myself.  And I am also sitting here thinking up additional words to call myself....  On the flip side, I am wondering if this is all a big fluke, and in the real world it doesn't ever happen like this... and subsequently I am not an idiot for thinking that it would never really work.... I will venture to try it again tonight.  Just like an experiment with a thesis - create idea, attempt, try again to confirm and report.

Anyway, I just couldn't even wait to tell you all about it, I even set up a reminder to type this one down in the Blog!  (Didn't want to forget this special occasion by any means.)  In addition I will have to report back on the tag team duo Jenn and Kay for Hunter's E.I. appointment later on today.  By the way, Hunter is still asleep (beside me on the couch) - yes well, get all the sleep you can bubby, it's going to be a workout in less than 45 minutes!

Sunday, December 20, 2009

My Journal - Week 18 (20Dec09)

Hunter's "Brushfield Eyes"




Yes, these are Hunter's Brushfield Spots.  If you look closely at his irises, you will notice the white spots that surround his pupil.  These are known as Brushfield Spots, a typical Down Syndrome marker in several Down Syndrome babies.  Sometimes these spots show up in other childrens eyes who do not have Down Syndrome, but it does occur in 35-78% of infants born with Down Syndrome.  It is more likely to show up in lighter coloured irises, and in caucasian children, and less likely in Asian children.  So, I think that Hunter is very lucky to have these beautiful little spots, since it is rarer to happen in darker eyes or Asian babies.  So, for all those people out there who keep telling me that Hunter will "outgrow" his blue/grey eyes, and that they will turn brown, the statistics say that if he has these lovely spots, he will more than likely keep his beautiful coloured eyes.  I hope that the stats are right, and that Hunter keeps his georgeous eyes, because like the rest of him, they are so unique and distinctive. 

Please enjoy his eyes, as we do - they are a spectacular feature.  And when you look into his eyes, he gives you gigantic smiles of appreciation for wanting to spend a few moments looking right at him and paying him all the attention in the world.

Saturday, December 19, 2009

My Journal - Week 18 (19Dec09)

Today was a fun day for Hunter, Grandma and I.  We went to cousin Judy's baby shower - oh remember when we had that day?  Seems so long ago, but really it was only 6 months ago!  Well, I was worried about Hunter's reaction to family that he hadn't seen for about 2 months, as he is now recognizing faces (or rather, the issue is when he isn't recognizing faces....).  For the early part, he was pretty upset, maybe a little over stimulated and a bit hungry.  But, he seemed to calm down and tolerate the rest of the afternoon after the 1st hour.  It's funny to watch him looking at other people.  But, once again - I am totally convinced that Hunter knows who is a recent mommy and who is out of practice! 

[Taina with a sleeping Hunter]

I noticed that Hunter was very quiet 'vocally' today though, so I am wondering if that is an early warning sign that he will be shy until he warms up to people?  I hope not....  Shortly after getting into the truck, mom and I endured a full blown "Hunter conversation" all the way home from Scarborough to Ajax!  And leave it to Hunter to have mom and I saying, "now why couldn't you be that talkative in front of the family?"  I am sure he was just recounting his experience of his first "hen party" otherwise known as a baby shower.




[Melissa tickling Hunter]

What did we expect - he was the only male in the whole house!  But, Hunter did save some smiles and laughes for Aunty Melissa at the end of the day.  (She knew the famous tickle spots, didn't she Hunter?!)  Now since Hunter had about an hour nap at the very end of the shower, (and I got a chance to eat and socialize - yay!) I am left with a wide-eyed not too sleepy baby for the rest of the evening.  Hummm, not to sure if the hour break I had will be worth it.  Guess I will find out in about 2 and 1/2 hours!

So while Hunter was only mildly gassy today, it hasn't gotten any worse.  I think that I need to put Hunter back on the baby cereal.  He's just too hungry on breast milk alone, and dare I say it - Hunter has woken me up two nights in a row at 4:30-5:00 am because he is slurping away, eating his fingers.  Now, at this point, he's not actually awake - awake, but he's obviously hungry because when I get him out of the crib and feed him, he goes to town like he's never eaten in his life!  So, I honestly think it is time to get back onto the cereal.  (Plus as a benefit, he does tend to sleep longer after having cereal at night.)



















Since all of our shopping is done, minus two people who we had done but now have to re-do, Sunday should be pretty relaxing.  Monday we are back at it again, we have our E.I. specialists (Jenn & Kay - my lifesavers) over early at 8:30 am.  I hope Jenn will be impressed with Hunter's neck development.  It has come a long way. 


Wednesday, December 16, 2009

My Journal - Week 17 (16 Dec09)

So, Count Dracula is still at it today, I don't know.  I don't recall watching Sesame Street when he was in the womb.  Well, I have to say, I am very happy that Hunter is not gassy any more (Knock on wood).  He doesn't cry in pain with gas as of last week, but he does fuss when it's time for a nap.  Boy he is just like mom and dad... he really fights having to sleep.  He can hardly keep his eyes open at times, and he mumbles away only to find that he has fallen asleep and startles himself awake if someone says something too loud (not knowing he's asleep!).  He's currently saying "ahhhhhhhhhhh ahhhhhhhhhhhhhhhhh - waaaaaaaaaaa awaaaaa" over and over....  It's kind of weird!  We hope and pray our kids will talk when they are little, only to hope and pray that they shut up when they are older!  It's cute though, he is just talking away, to no one in particular, over and over, we think he likes the sound of his own voice.  Why not?  I like the sound of his voice!

Something new though, since he's holding things now (all the time) he has learned to grab a hold of his own hair (better than mine!) with his left hand, and just hold it.  Perhaps he likes the feel of his own hair.  Maybe the texture?  His rings are passe now - same with Mr. Mushroom and Sophie the giraffe, although you may find him sporting one of them on occasion out of boredom.


The swing is still a personal favourite.  I have never had so much time to myself... not too sure if I like it.  I am so accustomed to holding him for his and my entertainment, that when he likes being in his swing, I feel kind of guilty taking him out!  He obviously likes it, as he sleeps so soundly in it, for periods longer than 20 minutes.  I have to say - I know I am still so lucky that he sleeps through the night (6 - 8 hours ever since week 2).  Luxury.  So then, why am I so tired?


Tuesday, December 15, 2009

My Journal - Week 17 (15 Dec09)

Happy 4 months to you Hunter.  Now, isn't that something - we are week 17, (yes I missed a week of posting) but you are actually 4 months old.  We saw Kay again today (Osteopath) and she is happy with Hunter's movement.  He is less "stuck" but still needs some more work!  She is a god send.  Hunter is so smiley these days (to those he knows), and the weird thing is - he has only met Kay for the second time today.  He trusts her, and smiles and talks to her like he's known her all his little life!  It must be true what they say, babies just know who mothers and grandmothers are.  It's all in the hold.

Speaking of speaking....  Hunter thinks he has the worlds largest volcabulary.  Uhh Uhh Uhh, ahh, ahh, ahh.  Baa baa baa, Laa, laa and as of late, he also thinks he is Chinese.  The newest words are: "Aiyaaa, and Hiyaaa"  I read something online that said babies in the womb know their origins by 6 months because they hear and are acusotmed to the sound of the accents.  So what does it mean when Hunter is counting like the Count on Sesame Street?  Ahhh Ahhh Ahhh Ahhhhhh!  (Use your imagination)

Also, Hunter had his 4 month doctor visit yesterday.  While not the greatest day (had 2 vacinations) owww, he braved it like a champ.  Only about 2 minutes of tears, and a mostly fussy evening - he was great.  Hunter now officially weighs 12lbs 12ozs, is 25 inches long with a 17 cm head circumference.  According to the doctor, Hunter is "in range" for height and weight.  He is also really holding up his head while on his tummy.  No more short periods of holding it up.  He is now holding his head up strong and high.  Great work Hunter!  And thank god for Jenn & Kay.  E.I. does work, so long as you actually do what they recommend.

Tuesday, December 8, 2009

My Journal - Week 15 (08Dec09)

Today Hunter saw the Osteopath (Kay) for a possible problem called Torticollis (Bending/positioning of the neck in a certain directon only) Turns out Hunter does not have Torticollis, but a strong preference for the right caused by a lock-up in his trunk area. She performed myofacial-release on Hunter's back. Where oh where did that beautiful neck go? Well, with Kay's help, we found it! Now Hunter can move much more freely, and with out being locked up. It will take some sessions, much like Chiropractics, Osteopathy is on the homeopathic line but it is very helpful (I am not really a fan of homeopathics/naturopathics). Also as a result, Hunter let 4 baby-farts rip and subsquently ended his 6 day pooing strike. We will see Kay next Tuesday for another treatment.

Sunday, December 6, 2009

My Journal - Week 15 (06Dec09)

Today we spent most of the day in bed. And the strangest thing happened... after feeding Hunter, I put him on my chest for some tummy time, and he spit up on me! Wow, that's a first! Only a table spoon size, but he did it none the less.... I guess I can't brag any longer that he has never spit up on me. Oh well, guess it had to happen some time! I will vow to not put him through tummy time just after he has eaten.... Lesson learned.


Also, just a side note, since giving Hunter cereal, for the past 3 days (none today though) he has not pooped. It has been a total of 5 days since he has last gone. I think we will hold off on the cereal for now, until I can get him to poop. Constipated poor baby I think.

Wednesday, December 2, 2009

My Journal - Week 15 (02Dec09)


So, we tried something new today (02Dec09). I gave Hunter some baby cereal! Only a teaspoon, but mixed with some beast milk, he loved it!! Yeah! Now, we wait and see. We had to, after draining both boobs and still a very unhappy baby.)


Also, the EI specialist Jenn, is very pleased with Hunters development. He is ahead but his neck is weak. She says that it's not out of range just yet, he has until 6 months, but we did get some exercises to help.


Unfortunately he still seems gassy, and I am giving him gripe water every night. As well, he is much more vocal, and a lot more louder than usual, but I attibute that to his loving to hear his voice.


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