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, February 27, 2010

My Journal - Week 28 (27Feb10)

The end of yet another pooping strike....

(More details for my journal)  Okay, this nine day pooping strike ended today with a poopy.  I can't stand that this poor baby is having only occasional bowel movements.  The weird thing is, since I have been giving him organics and water, he certainly hasn't been uncomfortable like he used to be.  It's just that his bowels are slow....  This is definitely a result of hypotonia (low muscle tone) which is affecting his intestines, colon and rectal muscles.  As he gets older I am told I can give him some Lactulose a liquid suspension that will help any constipation or slow bowels.  I am told by the pharmacist that Hunter is a little too young for it now though.  Lactulose is similar to an American product called Miralax, which currently is not really available in Canada.  We can get it here, but it isn't approved by our FDA in Canada.  I am going to keep up with the water and organics for now.

Tooth update:  It's sharp and pointy.  Yep, some babies with Ds have sharp pointy teeth, (a strange phenomenon) for their first set of teeth.  It only feels this way right now, maybe it's just the way it's coming in.  Not too sure yet, but when the rest of the tooth comes out a bit more, I will let you all know if it remained pointy.

Thursday, February 25, 2010

My Journal - Week 27 (25Feb10) (Evening)

I Spoke to soon.

Alright, I think I was ahead of myself a little when I said Hunter is not even bothered by his teething.  Not so fast Mommy... it really does hurt.  Today, Hunter burst into tears, that painful cry.  I knew immediately since nothing else was going on.  Must be his gums.  As soon as I massaged the sore spot, he settled down.  I promptly gave him infant Motrin and baby Anbesol (yes, I was prepared) and within five minutes, he was sound asleep - for 4 hours.  (Well, we did have a very early morning today as we were all up at six am for a doctor appointment scheduled at 8:00 am)  I decided to get the wet washcloth, tie it in a knot and freeze it in a Ziplock baggy (as per recommendation by Jenn our E.I. and the many books I had read.)  Here you can see a (more or less) content baby chewing on the frozen washcloth.  I decided that I will post a picture of the tooth again when he's a little less fussy and when it's more prominent for you to see in a photo.  We can see it, but the photo's don't do it justice.

[Ahhh, that feels good, but it's cold!]

 [Really Mom, you can stop taking the pictues]

[Boy have I got you guys trained!]

I am glad Motrin makes an infant suspension, because Motrin is an ibuprofen product which specifically reduces inflammation, and it lasts eight hours instead of only four. 
More to come....

My Journal - Week 27 (25Feb10)

A toothy update....

A day by day glimpse of the first (non disappearing) tooth.

Here you can see there is a tooth now emerging from the hole.  Also, you can see that the gums are kind of inflamed.  He's certainly still quite happy for a teething baby!  No painful crying episodes.  But he definitely likes to chomp on my fingers when they are in his mouth.  Gum massages do seem to make him additionally happy.

   [My mommy thinks I am asleep while she's taking this picture....]

[Ha, in a few days I will be able to really chomp on her finger when she tries this again!]

I think I now have a good reason to start to wean Hunter off the breast... I have come to the conclusion that while nursing was never ever painful for me before, it wont be long for that reality to change - fast.  I will see how the next little while goes before I make a decision.  (Hopefully Hunter will be nice!)

Wednesday, February 24, 2010

My Journal - Week 27 (24Feb10)

Sorry everyone, the video from the last post now works. If you didn't get a chance to see it, go back and take a look. It's too cute to miss.


My Journal - Week 27 (24Feb10)

Dancing for a dollar?

Since I have been busy posting other people's videos and newsclips, I thought it would be nice to post a video of Hunter (here you go Luella, because you asked.) entertaining himself in his Jumperoo.  Daddy and I thought it was kind of funny that Hunter has discovered how to "tap dance" instead of bounce.  The video is 2 minutes 10 seconds.  Just a short tid bit for you to watch.

Enjoy!  I am sure I will have many more to post, when I find some additional time to upload them.

Blog update:  I have added some additional "static" pages under my opening banner.  They are truly really nice references about Down syndrome from the Canadian Down syndrome Society.  If you haven't seen my new pages, I urge you to take a look.  When you click on the link, you must scroll down below the banner and "My Analogy" to read the material.  Sorry, I didn't choose that, and no, unfortunately I can not change it.

Monday, February 22, 2010

My Journal - Week 27 (22Feb10)

The real McCoy, this time....

I now know why Hunter's cheeks were so red, (and continue to be).  Originally I had reservations that it was due to his vaccination only because he has had the same vaccinations twice before, and nothing happened.  I know I mentioned that it didn't make much sense for it to be from teething because he already had a tooth that appeared and then disappeared on two prior occasions.  However having said that, tonight Hunter was drooling excessively and trying to jam both hands into his mouth.  I took a look and a feel (in the old spot where the eye tooth/molar was peeking out) and I didn't see anything, so I felt the bottom front teeth area, and I felt a raised up hard bump under his gums on the left bottom tooth side.  I looked in and noticed a shiny almost see through area located on that part of his gums - I suppose because a tooth is coming in, the gum looks nearly transparent in just that tiny spot.  I got the flashlight, and did some further investigation.  WOW, there it is.  A bottom front tooth.  I took a picture of it, (it's kind of hard to see so when you are looking, if you want a better view, click on the picture itself and it should open up very large) and now I have proof.

I think the transparentness is actually the hole.  This would certainly explain his crankiness these past few days, I am sure his gums are sore.  I bought him a Nuby teething ring, and an Icy teether.  (The Nuby picture below has multiple sensations for sore gums, and the Icy ring is a standard teething ring that is currently chilling in the fridge.)

I wonder if this tooth is going to make a full appearance or if it's going to be magical and we will have a disappearing act like the first one?

If it pokes out any further, I will be right on top of things taking another picture to record the proof!  At least this time it's in the right spot or a more typical spot then the last one!

Oh, a technical note for you all, if when you load the blog any of the gadgets (like Poll #7) are missing, either refresh your browser or click on the missing gadget and it should re-load.  Sometimes I outsource items (gadgets) for my blog, and they may not load properly for some reason or another.  And yes, I changed the blog background, I had a few complaints that the post and sidebar area were too small.  I hope that you all like this selection.  Changing things takes a bit of time, and some tweaking takes a little HTML knowhow.  Enjoy!

Sunday, February 21, 2010

My Journal - Week 27 (21Feb10)

An on going debate.

A few days back I posted my opinion about an episode that was played on Family Guy.  The episode is about teenager Chris going on a date with a girl named Ellen who has Down syndrome.  While there are nice points to the episode, (the show allows viewers to realize that they are having a very regular date, Chris actually likes her and that she ends up being a typical teen girl) I find that the show undermines the attempt to portray normalcy with other things like the disturbing song that was sung called "Down syndrome Girl" (click on the title to see and hear the song) and the many stereotypes thrown into mix.  If you haven't seen the episode you can view it here (it is approx. 20 minutes):

Watch Family Guy Season 8 Episode 12 - Extra-Large Medium

However distressing we may find this, Andrea had a positive look on the whole thing, as seen here in this article written by the New York Times:  ‘Family Guy’ Voice Actor Says Palin ‘Does Not Have a Sense of Humor’

Here is the news clip from Associated Press ( only 1:04 minutes long):

In the end, I am not sure where this leaves us, only that we certainly can take a lesson from Andrea who is very adept in finding the humour in things.  It is one thing that she believes there is humour in the show, but for the rest - I am guessing many are having a good laugh at her expense.  I hope I am wrong.  How do you feel about it?  Please vote in Poll #7.

Saturday, February 20, 2010

My Journal - Week 27 (20Feb10)

"Don't look a gift horse in the mouth...."

(A young horse is a more desirable gift than an old one.  A horse's teeth reveal its age.  The sense of the expression, therefore, is that if you receive a horse as a gift it is bad manners to look in its mouth to establish its value.)

I chose the above expression because I think it accurately defines this article I found today.  It is really a detailed article that I wish I had written myself.  The author of the article in the Globe & Mail, tells us why "There's no such thing as a perfect child".

I hope you read this article and digest it the way I did.  Enjoy.
There's no such thing as the perfect child.  (if the clicking on the title doesn't take you there, try copying and pasting the link in brackets below.)

Also - Just to keep you updated on my publication news, the Canadian Down Syndrome Society has just advised me they would like to promote my Analogy on their web site and will be doing so shortly.  Also, Exceptional Parent Magazine has advised they too will be publishing the story on their web site and they intend to launch it on World Down syndrome Awareness day (21 March) Appropriately dated for Trisomy 21 (Three of the twenty first chromosome). 

I'd like to personally thank the following organizations: DSAO, DSAT, CDSS and EP for publishing my work and my blog.  Because of them, I am able to educate people about Down syndrome.  (You can visit each of these by clicking directly on their names.)

Friday, February 19, 2010

My Journal - Week 26 (19Feb10)

Going, going, gone... almost.

I took some more pictures of Hunter's rosy cheeks, but it looks like it's going away.  This is what has me boggled.  It comes and then it goes - like a rash almost but in this case - there's no rash,  just a red looking set of cheeks!  In any case - his pictures are cute and it's always fun taking his photo.  He's such a ham!

            [Hi!]                               [I'm winking at you!] 

 [I can laugh too!]

[I know my finger is in my nose....]

[I am still laughing]

[Do you like my tongue?]
[Okay, really - I'm done with the pics....] 

[One last smile]

[Bye!  Hope you liked the pics!]
 Too cute, eh?

My Journal - Week 26 (19Feb10)

A red herring...?  Or just a slap in the face!

Something new has come up.  Hunter has bright red cheeks.  This started (mildly) yesterday after his vaccination, so I just thought it was a low grade fever (which he sometimes gets after his shots) and I gave him Tylenol and Motrin.  The fever went away, but the cheeks have gotten rosier.  At one point around 9:30 pm it looked like Hunter had a bad sunburn.  You would have thought he was either burnt or severely frost bitten.  I was remarking how he looked like a angelic cherub with the rosy cheeks. 
I had read a few things in the past that said rosy cheeks are indicators (and super tell tale signs) of teething.  We know his teething has been going on for a while, so it is kind of odd that the cheeks would only show up now, with his teething a reoccurring event since last month.  I went online (my favourite thing to do) and some mom posted that her son suddenly got these bright red cheeks after his vaccination.  I also read that there is something called Fifth Disease - commonly branched with MMR (Mumps, Measles and Rubella) and coincidentally that was what his vaccination was for.  (Perhaps that would be a reasonable explanation.) Now, I tend to go overboard on the research, but he has been a bit more cranky today then usual, but again who wouldn't be after a double vaccination??  I thought a picture would be more beneficial for you to see, but when I took the picture, his cheeks were less red then earlier on.  It seems to come and go, and when it comes, it tends to look worse then the last time.  Anyone hear of such a thing or experience this?
[Even while sleeping you can still see some redness in his cheeks]

I will probably add some more pictures later, when he wakes up so you can see the difference.  It actually looked like he has been slapped - which is why the nick name for "Fifth Disease" is slapped cheek disease.
Please comment below the post in the blog - and let me know what you think!  (I am sure there are plenty of Moms, Dads or caregivers who may have run into this who can pass on their wisdom and experiences.)

Thursday, February 18, 2010

My Journal - Week 26 (18Feb10) Evening

OMG! I think it's a poop factory!

Well, you will never believe - rather I don't believe it, this morning at 8:30 am, Hunter had another poopy.  (At least this time it was of a normal amount and did not require additional intervention!) So, yay!  This is probably a sign of my need for psychiatric help.  I am cheering because of poop....  I am not sure what's happening, but it would appear that Hunter now has somewhat normal bowels. Nice, normal baby poop. I guess the organic baby food, and sugar water (both recommended by our E.I. Jenn) has done the trick.

I wanted to also show you something I think is very cute, but is really supposed to be therapy for Hunter's core tummy muscles. Jenn suggested getting Hunter a ball, in order to help him learn to use his muscles. Here you can see him enjoying the ball, despite the fact that he is supposed to be using it on the floor! Oh well. Cute never the less.
[Hunter during play therapy]

[Hunter is more interested in the ball then the therapy - at one point he was licking the ball... (Yes I had cleaned it first.)]

Obviously, there is more to come.  Stay tuned!

My Journal - Week 26 (18Feb10)

Just another day in the life of a family with Down syndrome....

I don't think I need to say more than this. The video clearly says it all.

Not a good day in the Humour department. I certainly wasn't a fan of Family Guy anyway - now I just detest the show.

Wednesday, February 17, 2010

My Journal - Week 26 (17Feb10) Evening

An apple a day keeps the doctor away?

We just got in from a long day out at the doctor's for Hunter's six month check up. Phewph.
Details first: Hunter is now 15 lbs 11 ozs (no wonder my back is finished!) He is also 25 inches long (but according to our home tape measure he is 26 inches...) All I have to say about that is, whenever the nurse measures him, somehow he ends up shorter than the last visit (every visit). I will stick to using our measurements. His head circumference measures 16 3/4 inches.
Hunter had two vaccinations today, and those ECG leads on the wall do something powerful (for those of you who don't know what I am referring to, in one of my posts about Hunter's doctor visit, he had his needle and didn't cry because he was too busy paying attention to the ECG leads hanging on the wall.) there was no crying - only a yelp, then laughter. Crazy crazy (good) baby!
In addition, we decided to hold of on requesting the ultrasound, after discussing the recent pooping. We will keep a close watch on his bowels though.
So in a nutshell we have a mildly floppy baby, who is cognitively very smart!

My Journal - Week 26 (17Feb10)

A near disaster....

This might be TMI (too much info) for some, so early in the morning - but these are my journals and I feel the need to report - for memory sake.

5:26 am. Hunter begins to call me. "Eh? ... Ehhhh!?" This is the usual, "Mom?" Mooooom!?" Meaning of course "Hey!" I need you - wake up!" So, I grab him out of the crib and think to myself, it's only 5:26 baby! Oh yeah, someone went to sleep at 9:30 pm last night. Figures. Only this time, when I start to feed him, he starts to fart, and fart, and fart! Then I catch a whiff. OMG (Oh My God), you are eating and pooping? At the same time??! But, instinct also kicks in, and somehow by the smell I can already tell, it's going to be an explosive poop, the kind that go up the back poop. "John! Wake up, I am going to need your help for this one" I say without hesitation. I literally grab five wipes (HA HA, not nearly enough...) and a new diaper and jump back into bed where Hunter is lying laughing at me. I unzip his sleep sack, (Yep, the smell has got me up now) and I unsnap his sleeper. Okay, without looking I just know what's coming next. "John, grab me the whole roll of paper towels..." This is THE worst poopy diaper I think I have ever seen. Yes, it's up his back, it's everywhere. Luckily it was all contained in his sleeper, but not for long if we didn't get a move on. John stumbled around in the dark, like a crazy man out of control while I was yelling for different things "need more wipes, need paper towel, need another sleeper" in various orders of course.
Anyway, after I stripped the baby, baby wiped him from head to toe (including an elbow - his, not mine) I was done, and John was downstairs washing Hunter's sleeper. Now that is a great Daddy. I didn't even have to ask - he just did it on auto pilot. I love John. Sorry, no pictures about this - use your imagination.
So now here is my new dilemma. What exactly do I tell the doctor today? I was all prepared to demand an ultrasound for Hunter's tummy to check for any possible issues like a blockage, but I know for sure (without a doubt) there is NO blockage... at least not any more. I suppose I will still ask, but it obviously wont be urgent any longer.
I just thought since my morning was so funny, I would share it with all of you. I was supposed to post later tonight about Hunter's six month check up. This was a necessary in between post. I will inform you later what his newest measurements are.

My Journal - Week 26 (17Feb10)

A pleasant surprise.

Today we had a visit from E.I. Jenn. Hunter was supposed to have put on the performance of his life, but unfortunately he was hungry at the time and we didn't get very much accomplished. He did show off for Jenn by displaying how high he could raise himself on his tummy, and that he could grab and play with his toys. It's funny though, it is like owning a car that needs to go to the dealer for some noise, and when you get it there, the noise doesn't happen.... Kind of like Hunter. Normally he rolls around, grabs his toys, shakes his rattle and practically does all the wonderful things that I rave about on the site like clockwork. But when he was to demonstrate for Jenn, he got shy?? Cute. I wish I had shown Jenn how he loves to bounce in his Jumperoo, and how he grabs, moves and plays with the toys on the front of it. A video might have to suffice next time.
Jenn gave me a ton of printouts of all the exercises that Hunter can do to help his muscles. We definitely needed some of those sheets, since it looks like Hunter's neck is still kind of lagging a bit. Something really great though is that cognitively, he appears to be ahead. Despite not rolling around showing off physically during the appointment, Hunter talked up a storm saying "Mumma, Dadda, Babba, Ra-ra and La-la" Jenn tells me that this is wonderful. I am really proud of Hunter. Again, I have to say, there is no reason why Hunter shouldn't be talkative, just look at his parents!
Jenn also followed up on Hunter's eating issues. I was proud to report that we had some success. Eating has been going well for the last few days (organic baby food) and pooping finally happened.
As a result of some new recommendations from Jenn, Daddy and I promptly went out and bought Hunter a few things to help his muscles out. We bought him a ball to sit with, so that he can hold it and strengthen his core. We got a basket to sit him in to encourage his sitting, and again his core. I also bought him a sippy cup handle so that I could get Hunter to hold his own sippy cup, and guess what? Once I snapped it on, he held his own sippy cup, feeding himself. Wow, I think that is incredible.
I guess that in all we had a great day, but Hunter must have been tired out from all the showing off, and then because of some work I did with him after. He fell asleep tonight at 9:30 pm. I wonder what time he will be waking up?

Tuesday, February 16, 2010

My Journal - Pregnancy Week 16 (20Mar09)

This post is going to be moved to the beginning of my blog sometime later, (so that the order will make sense to others in future) but for now, I will leave the post marked with today's date.

This is an excerpt from my book "Welcome to Our House".  It is Chapter 7 - The results.  I am posting this chapter so that people can have an idea of what we went through when we found out, and also to give you all a sneak peak of my book.  (I suppose this would be the chapter I would choose to read when I have a reading.)  Please remember the work is copyrighted material and not to be reproduced anywhere without my direct consent.

Chapter 7 – The results.

The next week following the amniocentesis was long and uneventful.  I had spent the first few days after the procedure, relaxing and trying to take it easy as recommended by the hospital.  I was ordered not to lift or do anything strenuous, and knowing this, I took the opportunity to get some bed rest.  The next Monday was the 16th of March, and I was starting a functional rehabilitation program for my back.  The program was scheduled for six weeks, Monday to Friday.  I was happy for some distraction but I was not pleased that I would be doing this program while I was pregnant.  The program was mandatory because I had been off work on injury compensation.  I had little choice about the attendance, so I went as ordered.  During the first week of the program I had missed three of the five days due to a prenatal appointment and two prior court appointments left over from when I was working on the road.  The only days I had been able to attend in the first week was Monday and Friday.  Since my week was so busy, I was relieved when Friday came.

I arrived home at 4:00 pm, and just got settled when the phone rang.  It was 4:15 pm.  “Hello Sandi?  It’s Ines from the Genetics Clinic.  Do you have a moment to talk?  I have the results from your Amniocentesis.”  I was kind of surprised to hear from the counsellor, since we were told at the hospital after the test, the results usually take three to four weeks, unless there was a problem.  I suddenly had a nagging sinking feeling in my stomach.  I had taken the phone call in my office where John was already sitting using his computer.  I told Ines that I could take her call.  “Sandi, the results of the amniocentesis is that the baby has Down syndrome.”

The next few moments seemed like an eternity.  It was probably only a matter of seconds, and in those seconds I started to cry.  I still had the phone against my ear, and I had to remember I had Ines on the other end of the phone.  “Sandi, is there someone there with you?  Do you need me to call anyone for you?”  She asked, clearly not wanting to distress me any further.  I told her that I was already with my family and that no further phone calls would be necessary.  I asked her one last question before I hung up the phone.  “Do I need to come in to see anyone?”  She gave me an appointment date and time to speak with the head Geneticist, Doctor Velsher.

I hung up the phone and immediately collapsed into John’s lap.  I cried so hard, I don’t believe I had ever cried that hard in my life.  John was going crazy.  He didn’t even know what happened.  He would later tell me he thought someone in my family had died.  At that point in time a part of my heart seemed to break.  The first thing I thought was: this couldn’t be happening to me.  The next thing I thought was: yes, it was happening to me, but why?  Why me?  “What’s happened Sandi, What’s wrong?”  John was extremely worried.  “The baby has Down syndrome.”  My words were so black and white and so very sad, filled with sobs and tears.  John didn’t say a word.  He just held me and stroked my hair.  What I didn’t know at that moment was that he was actually relieved.  There was no tragic death, nothing terribly wrong with the baby or pregnancy, just Down syndrome.  I was so consumed with sadness, that I had no idea at the time what John was thinking about.  I would later learn John had a very different outlook about the result at the time.  I cried in John’s arms for about an hour.  I needed to get it all out, all the anger, all the sadness, everything.  I would deal with the questions and reasoning later.  For that moment, it was all about me and my little dark world.  I remember thinking in that darkness, 1 in 385.  Yes, I was that 1 in 385.  How sad was that?  When I finally let go of John, I looked him square in the eye and asked him if he still wanted us to keep the baby.  I was so fearful that he would have changed his mind, but at that point I was ready for anything.  Nothing could be worse than what I had just heard.  “Of course” he told me.  “I told you, we can deal with it.  It will be no big deal.”  Although I needed to hear John say that, I was still lost, I knew it couldn’t be that simple, and I was hoping that if the future was to be difficult, he would always remember that he was willing to endure it.  Several things ran in and out of my mind.  Terrible things like that John would blame me for the diagnosis.  That, if something should go wrong between John and I for some reason, he would leave me alone in this situation to raise our baby alone.  But, John never faltered.  “I need to tell my mother.” I told John.  He nodded and let go of me.  I knew one of the reasons I was so sad was because I couldn’t bear to think about an abortion.  I was so caught in between what I thought was a rock and a hard place.  I knew I couldn’t terminate, yet I was so stunned by the diagnosis.  I knew nothing specific about Down syndrome at that point.  I had spent a little time with some special needs children years ago and I had the vaguest ideas about what Down syndrome was about.  I had hoped my mother could be the support I was looking for.

My mother was sitting at her computer, and it appeared she had some idea that I had received a very distressing phone call.  It would have been nearly impossible for her not to have heard me bawling my eyes out a floor beneath her.  “The baby has Down syndrome.” I told her.  “Oh Sandi, I am so sorry.”  She gathered me up in her arms, and held onto me while I cried my heart out for a second time.  She stroked my back and didn’t let go.  Sometimes, a mother’s touch is all you need to put things into perspective.  I started to think, instead of react - until she said her next statement.  “You can always try again soon.”  I let go of my mother and gave her a questioning look.  What did she mean by that?  I was sure I had made it quite clear to everyone before the amniocentesis that I was no longer able to consider termination as an option.  Something inside of me snapped.  “I am not having an abortion Mom.”  My mother tried to be sensitive but I wasn’t hearing the words she had to say.  In between my boiling rage, I heard her point out certain thoughts to me like: what kind of life would the child have, our life would be extremely difficult and so on.  My mother wasn’t trying to be negative; she was only trying to point out things that she thought she understood.  Unfortunately, her ideas and thoughts were very out of date.  My mother’s world at that point was very black and white.  For her it was or it wasn’t, in most cases there was no in between.  Before I could take anymore, I turned to look at her and said, “I came up to tell you about the baby, not to ask you what I should do.  I realize that what I need from you is your support.  I will probably need your help going forward, and I need to know if I can count on you.”  The words just flew out of my mouth, but I meant them.  I looked at my mother who looked as dumbfounded as I felt.  “I support whatever you want to do Sandi.” She finally said.  I hugged my mother again, and this time it felt right.  In that moment, I realized that I had endured a dark moment, as horrible as it was, I was entitled.  I also realized that I was not going to allow myself anymore tears.  This baby needed me and now was the time.  I needed to do what I did best.  Research.
I hope you all enjoyed reading this little part of my book.  So far I have completed approximately 51 pages of my manuscript but there is still much more to do.  Feel free to leave a comment below in the blog.

Monday, February 15, 2010

My Journal - Week 26 (15Feb10) Evening

Bottom's up....

Hunter has finally pooped.  I had no idea, I went to change him and surprise, there it was.  Our old mushy smelly friend, poop.  Oh, I know TMI (too much information) but, if you were as worried as I was, you would understand my celebratory relief.  I will still be following up with our doctor and I will definitely report back.  At least now I know it's not constipation, it has to be something else like slow/low tone intestinal muscles or Hirschsprung's. 
Whatever it is, we will get to the bottom of it - literally no pun intended.

My Journal - Week 26 (15Feb10)

I am happy to announce "Welcome to Our House - An Analogy" has been published in two wonderful Down syndrome sites.

You can see them here (under "Headlines")at:
I have added these two sites to my reference list of helpful sites, located lower in the right side bar of the blog.
I hope everyone enjoys the sites, as I personally have found them to be a wonderful resource.

Happy Family Day (Canadian National Statutory Holiday) to everyone.
And, Happy six months to Hunter.  Can't believe it's been six months already!

Wednesday, February 10, 2010

My Journal - Week 25 (10Feb10) Evening

Strike three... I'm out (of options)....

Well, the organic baby food didn't work.  Exactly one hour after feeding him, the crying out in pain started.  It breaks my heart.  We have our six month doctor's appointment next week.  Now that we have pretty well exhausted all options (short of making our own food), I want an ultrasound for Hunter's tummy.  He likely has baby GERD (Gastro-esophageal reflux disease) since both John and I suffer from it.  I can't take watching Hunter in pain.  My worst fear is that he has Hirschsprung's disease (Babies and Children with Ds are commonly affected with this).    I will keep everyone posted on that.

My Journal - Week 25 (10Feb10)

Is it working?

Yesterday Hunter had an unscheduled visit from one of our superheros E.I. consultant, Jenn.  We had some discussions about Hunter's recent eating dilema.  It seems that every time Hunter has something solid to eat, within an hour he is crying from some sort of pain.  At first, we thought it was gas pains, since Hunter refuses to burp after any meal.  We gave him baby Ovol (a gas reliever) and we tried the gripe water repeatedly.  Relief was insight but it was only temporary.
I was about to give up the solids for a while, but Jenn reminded me of something that made me specifically start Hunter on solids at 5 months of age.  After speaking with our family doctor, we learned that the new standards made by the Canadian Pedeatric Association suggest not starting a baby on solids until after 6 months of age in order to avoid food allergies.  However, our doctor told us: because of this, many parents are discovering that later on, their baby wont eat or are having food aversions.  Jenn also confirmed this.  I knew about this problem from my own reading and research and so I took my doctors advice and decided to start when I felt Hunter was ready.  My doctor told me that he always believed the adage:  Mom's know best.  Unfortunately, despite my attempts to steer Hunter away from any possiblity of future food aversions, he is having some sort of reaction or difficulty with baby food.  It would seem that no matter what I fed him, he would have pain of some sort.  I went back to the internet to see if I could find anything on the subject, and many mom's suggested going back to exclusive breast or bottle feeding.  This might stop the problem, but it would only create another.  I needed another answer.  Jenn to the rescue.  "Try organic first" she suggested.  I went out immediately after and bought a variety of organic baby foods, and a box of Oatmeal cereal (as suggested by Jenn and the Internet) instead of rice cereal.
Armed with the new baby food, I tested it out on Hunter at 8 pm and I waited for the worst.  9 pm came, and bath time was a breeze (except for the fact that I now get my own personal shower during the event....).  Bed time came and Hunter fell asleep without complaint.  Could this be possible?  Hunter needed Organic food?  I am hoping that I am not jinxing my experience and that tonight will be a repeat performance. I will report back if there are any changes.

Tuesday, February 9, 2010

My Journal - Week 24 (09Feb10)

Controversy vs. Cure  - Should Down syndrome be cured?


I am caught between views as I read an intersting article about a theoretical and experimental cure for Down syndrome.  Now, understand there is no cure perse but the idea is running rampant and the controversy is causing some serious debates.  At some point, this idea will become a reality.  Testing is already being considered.  So, the article covers two sides more or less.  In a nutshell;

1.  It is a wonderful idea - it is meant to aid the cognitive development of a younger child so that his or her future development is broadened, never meaning to take away who that person is.
2.  It is a horrible idea - it takes away from the person as a whole, it changes who these (with Ds) people are, and society is trying to "abolish" or "erase" the Ds from people or is just outwardly proving nonacceptance of anyone with Ds. 

While I agree with the feelings and ideas that both sides are saying, there is something that I do not agree with.  No matter what my personal views about Ds are, I would never propose or suggest that someone else not make a certain decision to consider it (should that happen).  The article clearly states that the treatment, should it become a reality, is only for certain people, situations and circumstances.  It is not meant to be a catch all for everyone who has Ds.  The way I see it is, if someone felt that the treatment was beneficial for someone's development, why should that be a problem?  I don't think anyone who would consider the treatment would do so because they are trying to inwardly change their child to be or become someone they are not.  I think that (hopefully) those that consider it do so with the belief and idea that it would aid in their early intervention, not inhibit it.  Where do we draw the line by attempting to help our children to attain their full potential?  But I do agree, it should not be done at the cost of changing our children or their personalities.  Would we be against it if it were additionally able to save a childs life?  Somehow I can't see or understand someone deciding that dying is better than a cure.... (Note - the article does not discuss the ability to save lives, I am just using an analogy.)

This is indeed a touchy subject.  I made a personal decision to love and accept Hunter no matter how he develops, what his limitations are or who he eventually choses to be.  If there is never to be a "cure" then so be it.  If there is no more "early intervention" so be it.  He is my son, and I will love him, support him and cherish him until the day I die.  So the way I see it, if it happens to become a reality, if even we are eligible, only then will we consider it.  Until then, I wont even worry my head over it.  I currently am much too busy worrying about how to never get peed in the face again!

Out of curiosity, how do you feel about it?  I have made a poll for you to decide.  (I would like to collect these statistics for my book.)  Your vote is confidential.

Monday, February 8, 2010

My Journal - Week 25 (08Feb10)

I'd like to share something new with you.

I found a new book that is coming out sometime this year.  It's a book about Down syndrome in a perspective that I haven't heard of or seen before.  This Author, who does not have Ds himself, nor knew anyone personally with Ds (before writing), wrote this book.  He claims he wrote it simply because he felt that people with Ds are gifts from God.  I invite you to read the forward and not want to order this book for yourself (providing you are someone who wishes to read about Down syndrome).  I have already put myself on the pre-order list.  When you purchase the book, a $5.00 donation goes to a Down syndrome organization of your choosing.  (I was even able to select the Canadian Ds Association!)  Outstanding.

The title of this new book is called:  "I'm Down with You" Written by Jagatjoti Singh Khalsa - click on the title and enjoy the website for yourself.  I dare you not to want this book.

On a separate note, come and check out the new additions to my blog.  I have added some new menu items below the 'Welcome to Our House' banner.  All about me, Sandi's publications, and Sandi's Blogroll are the newest additions.  Remember also there is a "Guest Book" at the bottom of the Blog (or at the end of the new pages) please feel free to sign your comments or thoughts.  There is also a Comment form at the end of each new post, feel free to leave comments about each post.  We welcome your thoughts!


Sunday, February 7, 2010

My Journal - Week 25 (07Feb10)

It was bound to happen....

Golden shower anyone?  Everyone knows that having a baby boy means changing a diaper is an Olympic event at the best of times.  You always have to be on the lookout for the ever so sneaky spraying pee-pee.  Now, I can tell you first hand, it's not as though I haven't been the victim of a shower in the past, but I have to say, Hunter has never peed in my face, until 10 minutes ago.  Yep, I have definitely been christened or rather baptized in this case.  I can't even laugh at myself, I should know better!  I always laugh at the new commercial for Huggies, where the new dad is at some party and he is attempting to change his son and the baby proceeds to 'fire hose' spray everything, from knocking down pictures to hitting the roof and he just lies there laughing and looking at his daddy.  Today, that was me and just like the commercial, there was Hunter laughing.  Ya, you laugh Ohhhh soooo funny, a mouthful of pee. 

I am warning you.  Never look directly down when changing your baby.  You never know when that thing is going to go off!

For those of you who haven't seen this, I dare you not to laugh.  Now, imagine me - Poor me.

Thank you for indulging me.  I am now going to shower and wash out my mouth (again).

Friday, February 5, 2010

My Journal - Week 24 (05Feb10)

Down syndrome characteristics?

I thought a lot about the typical characteristics that Ds brings about.  And in thinking about this, I thought about Hunter's characteristics.  I don't think that Hunter looks like anyone but himself and obviously his family.  I say this because people tend to think that children and adults with Ds look alike.  And while they share certain similar features they do not all look alike, everyone is entitled to look unique.  An unfortunate misnomer.

Knowing that, I wanted to make a list of the things I think make Hunter unique.
  • Upward slanting eyes:  This one is tough.  Hunter is 1/4 Chinese, so the slant is deceiving.  Is it the Ds or is it the Asian genes?  He also has a minor epicanthal fold in the inner corners.  I have slanting eyes but don't have the fold though.
  • Small floppy ears:  This too is tough... he definitely has these ears.  I have very small floppy ears also so, could he possibly have inherited my ears?
  • Small nose:  I feel like I am repeating myself.  Hunter has a small nose and yes, I too have a small nose.  But so did John when he was a baby.
  • Small head:  Perhaps at birth, but he only weighed 5 lbs 14 ozs!  No one thinks his head is small now!
  • Clinodactyly (Crooked baby fingers):  Hunter does have this.  I never even thought anything about my own until I was researching Ds.  Yes, both of my pinkies are crooked.  I am told by the geneticist that this is also found frequently in people of Asian decent.
  • Simian Crease (Palmer crease):  He has one on his left palm only and it is not singular.  Nope, I don't have this cool feature (and as a side note 13% of Asians have this, and it is a sign of being intellectually gifted).  I have discovered that intellectually known people such as Hillary Clinton and Albert Einstein have one.
  • Sandal toes:  Nope, he doesn't have this one and neither do I.
  • Brushfield Spots/Marks:  Wow, until looking in Hunter's eyes, I wouldn't have known about this phenomenon.  His eyes are so beautiful I did a post about them back on 20 December 2009.  I am not lucky enough to have this wonderful feature.
  • Protruding tongue: No more than any other baby.  In this case, Hunter is lucky.  Some babies with Ds, have small mouths and it can be awkward for them, making it look like their tongue is too big when this is not really the case. 
  • Short stature:  Time will tell, but right now, Hunter has one very long midsection.  His arms are shorter than what I would say is average, and his legs seem to be of a normal length.  I myself, am on the shorter side.  Being only 5' 3.5" you can definitely call me short!
For others, there are more and sometimes less typical features but these are the ones that I have noticed in Hunter (and that I can think of right now).  Some of you may be scratching your heads wondering why I have some of the same features.  Honestly, I don't even know myself.  Both Daddy and I were tested and neither of us carries the gene for Ds.  Personally I think that I happen to have some of these features because of my 1/2 Asian heritage.  All I can say is that I wish I had the palmer crease (I could then call myself intellectual) and the amazing Brushfield spots.

Thursday, February 4, 2010

My Journal - Week 24 (04Feb10)

What happens when....

This is what happens when you allow an excitable, jumping baby to go all out....

I don't even think there is anything you can say as a caption under these pictures!

We had put Hunter in the Jumperoo for his daily jumping routine, and during his bouncing episode I received a phone call.  Here he was busy jumping away making the Jumperoo sing to him and all of a sudden it got eerily quiet.  Two things run through your mind when this happens.  "What happened to the baby?" and/or "What is he doing?"  (I know in a few more months it might be, "Where did he go?" despite the fact the baby gates are up.)  I asked Daddy what happened to Hunter, and he started laughing.  The baby had fallen asleep in the Jumperoo.  Exactly how tired do you have to be to fall asleep in that thing?  After a couple of pictures, Daddy lifted him out and put him down to sleep - properly.  This was too cute not to post.

My Journal - Week 24 (04Feb10)

The R Word Again....

It still haunts me, and I am still advocating about it.
This time I will try to be short about it, although I plan for everyone I know to understand how important it is not to use this offensive word. 
I stumbled across another wonderful blog, which had this very topic (as many of us Ds moms do post about) on her site.  She had a link and also copied the entire contents of the link into her blog for people everywhere to read.  It is a really well articulated article, and I thought it would be a positive gesture of me to reproduce it here, in hopes that the message will someday be understood.  I personally would have loved to copy the entire contents of the article into my blog, but I fear some of you may flog me for continuously ranting.  This is however, a topic that should be ranted about, so without overdoing it, here is the link - please take the time to read it.  It is important to me, and a great many more.

The link is:  http://faulknerfam.blogspot.com/2010/02/reposting-r-word.html
Faulkner Family

My commitment this year and (in future) is to try and change peoples apathetic and indifferent view about this negative word.

I know it's a strong message, so thanks for listening & also for voting on the poll about this.  (3rd poll)

Updated: 6Feb10:
I recently found another blog that speaks volumes about this topic, and honestly she wrote about it in such a way that almost made me want to rewrite this post.  I loved her straightforwardness about it.  Read it here:

Monday, February 1, 2010

My Journal - Week 24 (01Feb10)

Thank goodness for Aunties!

As you all know, yesterday Hunter was scalped.  And although it is finally starting to grow on me, (and I guess it better, I don't have any choice in the matter now) I worry that his head will be so cold compared to before with the mop of hair he used to have.  Conveniently, my Aunt made him a wonderful and quite appropriate gift and gave it to us yesterday.  What perfect timing!

[Grandma posing with Hunter in his new toque!]

Awww!  Doesn't he look sweet?  The hat is so soft and warm, now I don't have to worry about my little boy having a cold head.  Thank goodness for Aunties.  (Thank you Aunty Gem.)

On another note, aparently yesterday I also missed out on something pretty special.  The Grammy's was on T.V. and I found out that Jamie Foxx (Actor/Commedian/Singer & Songwriter) was on with his sister, who has Down syndrome.  I am told that she was signing and dancing (some R&B moves), and that it was also on YouTube, but when I went to look for it, I was sadly informed that the Grammy's have removed the clip due to Copyright.  Boooo!  So, I found a little clip taken last year of Jamie celebrating his sister's birthday.

Also, here is a link of Jamie Foxx talking to Oprah (on SIRIUS Satellite) about his sister and how "precious" she is to him.

And I was lucky enough to find an interview of Jamie Foxx and his sister Diondra after the Grammy's.  (I can't help the 30 sec. advertisement before the clip.... sorry.)

To me, this is truly inspiring.  A famous person letting the world know he too has Ds in his life.

Enjoy.   (You may have to view the videos from my blog page and not through the actual automatic email that some of you get.)
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