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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Friday, May 28, 2010

My Journal - Week 41 (28May10)

Great breaking news.....

I know I talk a lot about the use of the word "retardation".  Well, finally there has been some progress made in permanently changing and removing this word for good.

A U.S. Senate committee has approved removing the words "mental retardation" and "mentally retarded" from federal laws, text, medical journals and literature.  This is exciting news especially for parents and families of children who have intellectual delays.

[Click on article picture above to read a larger version or click link below]
You can read the article here http://www.washingtonexaminer.com/breaking/panel-approves-removing-retardation-from-laws-94935124.html

I am so very pleased about this, as are many other families.  People with Down syndrome have been struggling with this word for so very long, and knowing that each person with any disability has unique skills and advantages, makes this all the more worth while.  I hope that text will reflect this new law, and that medical literature will now be changed to reflect this amendment.  Unfortunately if the change only affects articles or text going forward then we will have another battle on our hands.

Tuesday, May 25, 2010

My Journal - Week 40 (25May10)

Hands and knees are for what????

Yesterday I promised that I would post pictures about today's wonderful play-date with my girlfriend Nikki and her son Chase.  Unfortunately since we got to talking so much (catching up like always even though it's only been a few weeks since we saw them last) and got too distracted and I kind of forgot to take new pictures.  Having said that we did get to go out for a beautiful walk, the babies got to chat and babble among themselves (how cute was that?) and Hunter got to see Chase crawl around and play with toys!  This was a huge benefit because I think after Hunter saw Chase crawling something clicked.  I have been saying on occasion that Hunter will get up on his fours and rock himself (usually on the bed or in his crib), sometimes going backward BUT today after Nikki & Chase left, I put Hunter down on the ground and he surprised me by getting up on all fours, rocking, and making small but definite progress moving forward!  Albeit most times he did this his forward momentum was a result of flopping down after rocking so hard, a few times he did rock himself forward a few inches!  It is obvious that since he was doing it so much today, and also staying up on his hands a knees for as long as he did, I predict he will be creeping or crawling along by the end of the month or at least before his E.I. Jenn returns for his next evaluation session on June 9th!  I can hope anyway!  It's a little thing like confidence that seems to stop him cold in his tracks.  Once he figures out that it will benefit him to actually go forward, look out - he'll be motoring away!  Right now the cutest and sometimes difficult thing to see is that he's trying so hard to go, and after expending so much energy trying he looks so defeated and frustrated that he hasn't made any progress with his attempt to reach or get to something he wants.  And he certainly lets you know that he isn't too pleased about the situation (while never crying, he can and will certainly grunt or yell out a displeasure!).

Here is what I was able to catch of Hunter on camera after Chase and his Mommy left us this afternoon....

[This is how Mommy said to start off...]

[Sometimes I still look like a seal out of water, rocking on my belly!!]

[Here I am getting ready to go up, wait for it... wait...]

[A little help from Grandma does make it easier when I am tired!]

[Hey!  Over here!  Did you see this?  I'm up - I'm up!!!]

[What you can't see is how I am actually rocking wildly forward & back!]

[Rooaaarrrrrr!  Wait... I'm not a lion?  Oh ya, those are Monkeys on my clothes!]
[So, now what?  I forget what Mommy said I am supposed to do next!]

Hopefully these pictures were worth seeing after me having forgotten to take some of the two boys together.  I know that there will be many more in future of the two of them, so not to worry!

Monday, May 24, 2010

My Journal - Week 40 (24May10)

Tale of the tape for the 9 month checkup....

Last Thursday (the 20th of May) Hunter had his 9 month checkup.  I swear the nurse who measures him has some serious measuring issues!  When ever she lists his official measurements, it's always off.  Each time she measures him (including the first time around), he loses at least an inch every time, so I had to ask her to remeasure.  This "first" time she got 26 inches.  I laughed.  I told her he can't continuously be shrinking every visit!  So she re-did it and he gained an inch from the first measurement.  But, in the end, he was still an inch shorter than what we get when we measure him at home!  So, officially he is 27 inches, but at home he is still 28 inches.  He weighed in at 17 lbs, 10 ozs., and his head circumference was 18 1/2 inches.  He had his final Menjugate vaccination, to which he momentarily yelped and then laughed.  He didn't even shed a tear this time.  Such a good baby boy, as always.  So it goes, he is healthy.  I did however tell Dr. Mark I had a concern with his legs, as they seem to bow in at the short bones (tibia/fibula).  The doctor did notice this and also that his left foot seems to be less bulky then his right.  Upon going home we did then happen to notice that in his Jumperoo and Exersaucer he tends to stand on his right food only, and literally hikes up his left.  No wonder the left is bulkier than his right.  Dr. Mark ordered an X-ray for his legs.  I am not overly worried since it isn't like he isn't able to stand on or use his left foot, but it is kind of strange that if he has the choice, he doesn't like to put weight on it unless you force him to.  In any case, hopefully we will get to the bottom of it. 

Otherwise, he seems to be in great shape, developing wonderfully and is an extremely happy baby!  He is also noticeably hungrier these days, and I have decided to up his food intake to a complete jar of baby food over lunch and dinner, with half a jar of dessert later on - plus all his (five) bottles of milk.  I guess he will start to add on the pounds now!  Dr. Mark also advised that we could start him on Homo milk if we wanted to, as he seems to be ready for it.  I think I will wait a bit on that, since both Daddy and I have milk allergies, and I don't want to rush it and create an allergy if avoidable.  When I feel he's ready, I will gradually mix the 3% milk (homo) with his formula, in hopes that this time the transition wont be as painful as the breast to formula....

Pregnancy update:
As far as the pregnancy goes, there isn't a whole lot to update.  For my first ultrasound, we were not able to detect the heartbeat because the embryo size was just too tiny to see anything (2-3mm).  For the gestational dating, I am supposed to be 7 weeks and 3 days along, but I know this can't be correct simply because I tend to ovulate later than the typical day 14.  And having several (actually six) positive ovulation predictor kit sticks, tells me that I am likely at least six days behind what my actual gestational date should be.  That would mean that the measurements I was told for my ultrasound would be correct if I were between five and six weeks along instead of seven.  Normally a first ultrasound should be between 6-8 weeks, but when I was newly pregnant with Hunter, it was exactly the same way.  On his first ultrasound at 5-6 weeks, they detected nothing but a gestational sac.  It was simply too early.  It wasn't until nine weeks along that we were able to see a good sized embryo and a heartbeat.  Knowing this, I am staying positive and trying my best not to worry.  I have had excellent rising beta hCG (pregnancy hormone) numbers, and gawd awful nausea, moodiness and other crazy pregnancy symptoms (none of which I had with Hunter...).  At the end of the day, all are encouraging signs. 

Of course, I will continue to keep you all posted!  Tomorrow Hunter and I have a play date with my girlfriend Nikki and her son Chase!  I am sure we will be taking lots of pictures of the boys playing together, so take a peek at the blog for the new upcoming photos!

Wednesday, May 19, 2010

My Journal - Week 39 (19May10)

Just how many teeth do you have?

Well, well!  What did I just discover yesterday?  Hunter has sprouted yet another tooth!  It's his upper left front tooth and it's broken through the gum line.  That makes 3, plus the original tooth way back when he was just about four months old (his eye tooth or one behind that on his bottom left side) still pops up every now and again.  That tooth really is the case of the disappearing tooth!  It still plays hide and seek with us.  So happy to see he is able to chew some things now to give him a taste of solids.

I found something that is controverisal to say at best, on one of my forums I frequent.  I thought I would put it here in my blog for people to watch and think, "What would you do?"

ABC's "Primetime: What Would You Do" includes a scenario where a woman berates a grocery store bagger with Down Syndrome on the Wednesday, May 19th episode on ABC at 10 PM Pacific Time.  The bagger is portrayed by self advocate Mark Hubler of Jeffersonville, Indiana.

Currently on ABC News' website you have the opportunity to respond with what you would do if you observed this act.

To find out how customers would respond to such a scenario, we set up our "What Would You Do?" hidden cameras in a grocery store in Brooklyn, N.Y. While the scene described may seem extreme, it echoes behaviour that happens all too often.
In this very store, a grocery clerk named Elvis -- who has an intellectual disability -- has been stocking shelves for more than a decade. His boss, Ivan, calls Elvis "the best," and holds him up as a standard for all other employees. Unfortunately, customers sometimes berate Elvis, using words like "stupid," "idiot" and -- the most hurtful -- "retard."
Madeline Will of the National Down Syndrome Society knows how this word damages people with special needs.
"It makes them feel less valuable, makes them feel less human," she said. "It's important to say, again and again, this is wrong, this is not fair, this is not how we treat other people."
But will customers take a stand when they see a person with special needs being verbally abused?
To find out we hired Josh Eber, an actor who has Down syndrome. Josh has spent his life acting opposite Muppets on "Sesame Street" and A-list actors in Hollywood movies, but for two days he played the part of a grocery clerk facing profound ignorance supplied by other actors, posing as customers in line.
[There is a short 30 second advertisement before the clip starts]

Keep in mind - the people in this clip are Actors.  But we all know this kind of behaviour happens everyday, and sometimes from people we just don't expect to hear it from.  Hopefully you wouldn't let this kind of bad and totally unacceptable behaviour go unanswered.  As the representative from the National Down syndrome Association says, silence condones the actions.  And just like any other bad remarks like racism and the like - it's wrong.

Sunday, May 16, 2010

My Journal - Week 39 (16May10)

1, 2, 3 ACTION!  

Have you ever heard such an infectious laugh?  One that makes you just want to burst out laughing yourself?  Well, Hunter is no exception to that rule.  Here is our precious boy having fun, kicking the ball to Daddy and laughing his head off in the process!  Too cute not to post and share with the world.  Enjoy the one minute clip!

Saturday, May 15, 2010

My Journal - Week 39 (15May10)

Happy 9th month to Hunter!

Today (the 15th of May) marks Hunter's 9th month and also his 39th week!  I can't believe how time is litterally flying by and what seems like just yesterday is actually several months ago.

This past year was definitely the year for having babies for my family, friends and acquaintances.  This month my cousin's wife had their baby girl, Rosie.  In January my other cousin had her son Alexander.  John's cousin had  their 3rd son, Victor also in January I believe.  The year before was Sophia (my cousins daughter who is two months older than Hunter), Chase - born to my girlfriend from work, six weeks before Hunter.  And obviously Hunter in August.  Also our neighbour across the street had their second baby Kylie who was also born two months before Hunter was born.  Also, John's ex-wife and her boyfriend were just induced last night to have their new baby boy Darrien (a new half brother for my step kids) So, that is a total of eight babies in less than one years time that I know of.  Incredible if you ask me, and pretty wonderful for Hunter having all these babies to grow up and play with that will be his age!  It must be the next generation.

Bring on the babies.  And who knows, maybe I will be the first in our group of family, friends and acquaintances to have the first baby of 2011!  My official due date is 7th January, 2011.  What a great new years surprise!

I forgot to mention last Sunday - Happy belated Mother's Day to all the Mommy's out there and also a special mention for those Mom's who just celebrated their very first Mother's Day for the first time, just like me.

Friday, May 14, 2010

My Journal - Week 38 (14May10)

Did anyone say dessert?

It's been a week since I wrote.  A lot has been going on with me, pregnancy can consume a woman in so many different ways and unfortunately when it's nausea that overtakes you, it is hard to keep up with everything.  However, as a trooper I am persevering!  Despite doctors appointments and Hunter growing up right before my eyes - I had to sit down and get back at it - Blogging that is!

The nice, neat, new, NEWS....
Hunter had his monthly E.I. appointment with Jenn on Monday past.  We had wonderful and rave reviews from Jenn.  Hunter is developing so well, sitting independently and making the effort to crawl by getting up on all fours rocking and trying to go somewhere, (mostly backward but trying to go forward too).  He pivots around and even turns toward you when you call his name.  His favourite mode of transportation is still log rolling away so we have to watch Hunter like a hawk when he is on the floor!  He is saying Momma and Dadda specifically to each of us appropriately.  His cognitive development is extremely exciting.  He sorts items, throws "roll alongs" away from his Exersaucer for fun - boy do those hurt if you get pinged off with one!  He choses specific colour toys and he knows how to get and play with his Disney Baby Einstein music toys (Play-yard and Exersaucer) to hear his favourite song "Old MacDonalad".  (Out of 5 animal sounds and 5 songs, he knows the correct combination to press in order to hear the song he loves.)  He stands independently holding onto furniture and even took a micro step with Jenn holding him.  The thing I love the most is he is demonstrating such affection when he wants to hug us and he reaches out with his open hand to cup your chin and brings your face closer to his.  He pats you anywhere, lovingly.  He returns soft strokes.  He'll even give you five if you ask him!  All these wonderful things are so sweet but don't let him fool you, he can be a cranky monster when he hasn't had his two daily naps!  He now weighs 17.8 pounds and I'm not too sure but I think he is still 28 inches long.  We will get "the tail of the tape" on Thursday the 20th at Hunter's 9 month checkup.  Today, Hunter had his first two solid meal day.  Before today he was having milk for breakfast, milk for lunch, organic baby food for dinner followed by milk to wash it down and then one last milk before bed.  Tonight we added 1/2 a jar of organic fruits for dessert!  Yummy!  Hunter loved his blueberry/apple sauce dessert (so did Daddy and I!).

In my other world - the land of the Internet, I have been made the Community Leader for the Down syndrome Community on MedHelp's website.  I use my personal experience and knowledge to help, discuss and give answers to people asking questions regarding Down syndrome.  I enjoy being able to help people who have questions or just need some support with respect to Down syndrome.  It's part of my own "genetic make up" to live up to my name Sandi which means Helper & Defender of Mankind.

I am also currently six weeks pregnant with baby number two, and had a doctors appointment today just to see where I am at.  We have an ultrasound booked and a follow-up doctors appointment next week.  Knowing all of this, we are also looking into purchasing a second larger vehicle that can carry myself, John, Hunter, baby #2, and John's three other kids.  We had literally outgrown my Chevy Avalanche when it came to transporting everyone all together, but when we don't have my step kids, the Avalanche remains our primary vehicle.  So a friend of ours proposed selling us his Chevy Suburban (eight seater) which will solve our current problem when we are all together.

Just thought you all might like to see a few recent pictures of Mr. Hunter!

[Mommy, Me and the protector Twiggy cat.]

[Mommy says I am allowed to pet the kitty, but no pulling her ears!]

[Ha!  I snuck in an ear pulling, but the kitty said she didn't mind.....]

[How do you like my Exersaucer?  It was a gift from my friend Chase!]

[I love free toys from my friends.  It helps me to learn so much & it's fun!]

In a nutshell, that is where we are all at!  Hope to be able to give you all more updates as soon as possible!

Thursday, May 6, 2010

My Journal - Week 37 (06May10) Evening

Down Syndrome Association of Ontario Provincial Conference

I wanted to just let everyone know that there is a conference coming up this year being held here in Ontario!  It will be located in Niagara Falls - at the Sheraton Fallsview Resort and Conference Centre on the 15th, 16th and 17th October 2010.

See the DSAO (Down syndrome Association of Ontario) website or this direct link for more details:  http://www.dsao.ca/DSAO_2010_Conference.pdf

Daddy, Hunter and I are planing to attend this conference for the whole weekend.  We are happy this one is not too far away - only about a three hour drive from home.  Unfortunately the Canadian Conference is usually much too far away for us to attend as I believe the most recent one was in Alberta.

We hope if you are not too far away, you will join us there - and we can put some names to faces!

A side note:
Thanks to followers: Erin, Kelly and KleinsteMotte for the advice about the "Darn Diaper Dilemma".  I am going to try the liners and also use the old faithful Swaddlers through the night.  Unfortunately we can't go up in size because that is what caused the leaks since the larger sizes are just too big to fit him (saggy and loose around the legs)!  Also, I had to laugh - thank goodness "his little friend" isn't the only one pointing up!!  We tried the size 2-3 today and it has worked like a charm ... so far!  I'm keeping my fingers, toes and everything in between crossed for good luck.

My Journal - Week 37 (06May10)

The Darn Diaper Dilemma....

Pampers or Huggies???   Size 2 or Size 3???  Daytime or Nighttime???

Does this happen to everyone?  From the beginning, Hunter was a Pampers baby.  They had always fit right, and nothing ever leaked.  Recently, as he has grown, nothing seems to fit right and everything leaks!  He is in between sizes and since he is a "light weight" (he is in the 10 percentile weight group for typical babies, but in the 97 percentile for baby boys with Down syndrome - 17.2 pounds and 28 inches long) and so as a result his legs are not as chubby as other babies and thus he sometimes leaks out through the leg cuffs of the diaper or at the front and top of the waist because he's a boy!  Oh the dilemma!
So, we recently discovered Huggies Little Movers while at the Baby show here in Toronto.  They gave us a couple of free samples to try.   They worked for about two days, then he leaked again (out the front and top).  They aren't as high waisted as Pampers.  If I use the Pampers, he leaks out the legs and if I use the Huggies he leaks out the top!  Arrrrgh!  When Hunter was born we used Swaddlers.  As he grew we switched to Pampers Baby Dry with 12 hour night time protection.  And then we moved into Pampers Cruisers, figuring they would be good in stopping the leaks!  Nope, all of them leaked except the Swaddlers.  This past Tuesday we discovered Pampers finally made a larger "Swadalers" size 3.  Before last week, they only made Swaddlers sizes 1, 2 and 1-2.  Now they make 2-3 and 3.  We bought size 2-3 since he seems to be in between sizes 2 and 3.  And so we reverted back to the old faithful Swaddlers which he never ever leaked out of.  We will be trying these tomorrow, but we can't use them for night time, since they don't absorb that much for that long.  And Hunter does now sleep 12 hours straight through the night.

HELP!  Has anyone else had this problem of leakage due to smaller legs or boyish leaks out the waist?  I am going nuts trying to think of what to do, since they don't make diapers for smaller legs at the weight and height he is (as well as the amount of liquid he drinks!)  I would welcome any ideas, if there is a solution I would love to know!  Hopefully the new bag of Pampers size 2-3 will do the trick, but it still wont solve our over night needs....  I just hope he grows into his other diapers!  We have a bunch of different tested out diapers which I guess will have to be used by baby number two, if we can't use them up with Hunter!
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