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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Thursday, July 29, 2010

My Journal - Week 49 (29Jul10)

"No Intervention Needed"....?

Yesterday, was a day where I heard something I didn't think I might hear so soon.  Hunter had his appointment with superhero #2, aka Kay (his Osteopath Therapist).  Last time he saw Jenn (Hunter's regular Early Intervention Therapist - aka Superhero #1) she had told us that Hunter's progress was "Typical" and that she didn't even use Down syndrome charts to chart Hunter's progress.  We were so very happy to hear that, and while it would not have made a difference to us, it would have only encouraged us to work harder to help Hunter with whatever he might have needed.  The last time Jenn came (over a month ago), her only concern was that Hunter was seemingly trying to move his legs as one unit, instead of realizing that his hips moved independently.  Well, from that visit, she recommended that Kay revisit Hunter and just take a look to see if there was something physical that was making Hunter not use his hips independently.  Well, as time went on from Jenn's visit, to yesterday - so much has happened with Hunter, independent sitting, unassisted standing, taking assisted steps, that I emailed Jenn and asked her if we should have Kay come.  And we concluded that maybe we would have her come and watch Hunter and make her own assessment.

After Hunter put on yet another wonderful performance for Kay, creeping, in and out of sitting - even demonstrating for the first time ever, getting into sitting from his left side, squat to stand with hands held; Kay was very happy.  She said Hunter was doing awesome for his age of 11 months.  She looked at Hunter, told him that she loved these kinds of visits (where she didn't have to do a thing - the kind of visits I love too!) and wrote in the "Ongoing Goals" column of his paper work, "No intervention needed".

I can not stress the value of daily encouragement, the value of love and care, the value of believing in your child.  If you don't provide limits, your children will surprise you and surpass ones that you didn't even know existed.  I am truly amazed, even if I already knew that Hunter was doing these things for a while now, I am amazed that it's amazing to others.  It makes me feel terrific that Hunter is a perfect boy that some people might not have assumed he might or could have been, and it's important for me to say - he isn't perfect because he does things that are "typical", he''s perfect because he's Hunter.  I often say to people - it's not about what he can or can't do, it wont be about the future and what he might be or might not be capable of doing, it's about taking our steps together, and all about our learning along the way.

I now know to always say, "I wonder what tomorrow might bring?"

WEBSITE UPDATE:
It's been a couple of days now since I have received my template from the company who I bought my website background from, and I have been diligently working like a slave creating and preparing my new Website.  I hope that when I publish the site, that it will surpass expectations, but I know that doing that will always be a work in progress.  I might even publish it and continue to work on it, to enhance it.  So, if for now, it looks a bit unfinished when I do publish it, I apologize - but I do want to get it up and running for everyone to use/visit.
Again, for those who aren't familiar with the web address it is:
http://welcometoourhouse-ds.com  or http://welcometoourhouse-ds.ca
See you there soon!

Saturday, July 24, 2010

My Journal - Week 49 (24Jul10)

Playtime is learning time....

Today, I happened to catch Hunter trying something by himself.  I wrote a little while back that Hunter did something that scared me out of my skin.  He stood up in his crib, by himself and almost toppled out.  While I had no idea that Hunter could pull himself to a standing position without my help, he is certainly proving it over and over these days.  I managed to record him making an attempt using his new foam chair!  Not really the best item to use for a try, but I was surprised none the less.  After I recorded him trying to stand, he decided that he would try without any furniture, and tried to stand by placing his hands on the floor and bend over with his butt up in the air, and his legs stiffened straight with only his feet on the ground.  He looked like a human triangle.  I had guessed at one time that the "butt up" crawl sans knees would be the way he would figure out how to crawl, since that is just how his daddy used to crawl as a baby.  But, I guess Hunter is just quite happy to inch worm - commando crawl around.  He moves at lightening speed around the room, despite having to pull his entire body forward using his arm strength!

The video here is what I caught of his attempt to stand up unassisted.  (Short 1 minute video).



And some new pictures of Hunter with his learning centre now with the legs attached.  Interestingly enough, while the legs are on, Hunter can actually reach the different items on the table, but I thought he might be a bit more comfy in the new foam chair that I bought him!

[I wonder what is inside here?  I know there is something in here....]
[Peak a boo?  That's what it says?  I am going to look again....]

UPDATE:
Just some exciting news for everyone...
I have finally purchased the name for my NEW Website....  I will be completing the webpage this coming Monday, when I will recieve the background template that I ordered.  I will be designing the site by my self, and I hope to have it up and running by the end of the week.  The website will not be working until I publish it, but the site address is:  http://www.welcometoourhouse-ds.com or http://www.welcometoourhouse-ds.ca
I purchased both domains .com and .ca  for my site.  Either one will work.  This blog will actually be linked to that website, so you can access it from either location.  I hope that when it is ready you will come and visit there!  I will be posting when it is actually up and running!

Thursday, July 22, 2010

My Journal - Week 48 (22Jul10)

Introducing two new pages on my blog!

I have put together and added two brand new pages onto my blog.  The first one is called "Down syndrome - The Diagnosis".  This is a fully packed resource of information for families who just learned that their baby has Down syndrome.  Because so many questions and concerns run through your mind when you are first given this news, and often parents are stuck not knowing what to do next.  I have complied a long list of questions and answers on this page.  I hope that if you find yourself reading this resource, you will find the information that you were looking for.

The second page I have added is called "Do you have questions about Down syndrome?  Click here to ask".  When all the information in the world is not enough to answer a question that you have, you can ask it here.  On this page, I hope to be able to provide people with some unbiased factual pieces of information.  If I can't find the answer, I will direct you to where I think it can be obtained.

I hope that you will pass on these two pages as reference if you know someone who could benefit from them.  If you have any concerns about any of the information that I have provided, please message me directly.

You can access the pages at any time by clicking on the title of the pages which can be located immediately under my "Welcome to Our House" banner.  They will always be available there, along with all my other pages.  So, keep watching that area, more pages may be published soon!

Additionally, if ever you are trying to find something in my blog that you would like to see again, you can use the Google search bar feature located just above the beginning of the most recent post.  When you type in what you are looking for, (providing that the word you are using is in the blog or post you are looking for) the search tool will list all the blogs that contain the word you typed in.  This tool has been in my blog since it's inception, but I don't know if everyone was aware of it's existence or it's use.

I have also changed the look of my background as I mentioned in my last post I would be working on.  I am still investigating the reason why I was informed that I was loosing my original one.  I have yet to receive an answer from the providers of my background, but in any case I will ensure I have a pleasing looking blog for my readers to see..  (Which is why I have since changed providers).

Wednesday, July 21, 2010

My Journal - Week 48 (21Jul10)

"WELCOME TO OUR HOUSE" BLOG Under Construction....

Hello everyone, I just noticed (and was also told by a dedicated reader) that my blog "background" will be disappearing on Friday July 23rd.  This will NOT affect the content of the blog, just the background.  In order to keep up my blogs appearance, I will be trying to find a new and exciting background for the blog.  I had loved this one, and it was a lot of hard work to make everything look good with it.  So, please bear with me while I try new ones and see how they work with my posts.  If you should be logging in and see something weird or crazy, it will only hopefully be temporary, while I change it around.

I am sorry to see my brown background go, but hopefully I will find something just as pleasing to the eye, if not more so!

Once I find something good, I hope that you will all let me know what you think!

My original blog background
Here is a picture of the blog for memory sake! 



Sandi, John & Hunter

Tuesday, July 20, 2010

My Journal - Week 48 (20Jul10)

INTRODUCING - A NEW PAGE IN MY BLOG!

After receiving a very touching email last night from a member on one of the websites I volunteer with (MedHelp) I decided to create a special page for me to post these personal messages.  I used to post these messages I received on occasion right here in my daily posts, but I decided late last night that these special messages deserved a special page of their own that everyone could read whenever they wished.  When I receive messages like the one I just did, it hits a special place in my heart.  It's not about the kudos, it's not about the self gratification - even if it does make me feel great.  It's about the realization that I have reached someone, educated and even inspired.  I have always said, it is my goal to teach, educate and promote awareness.  It is nice to be able to see the fruits of my labours even if those labours are ones out of love.  It is also important to me to give these people the recognition they deserve for making the connection, understanding and realizing what I did when I had Hunter.

I invite you to visit my new page called: 
Sandi'sWall for Special Recognition
Click the title or visit the link here:  http://welcometoourhouse-myjournal.blogspot.com/p/sandis-wall-for-special-recognition.html  or navigate to the "Welcome to Our House" banner and see just underneath the title for various added pages including this new one. 

The page is not just for messages to me, but also messages I have sent to others.  I certainly hope that I can continue to add messages to this page, because ultimately it means the more messages I get to post, the more people I have reached and possibly educated.  If I have changed your perspective, or touched you in some way, please feel free to send me an email directly at tkd73@sympatico.ca.  I would love to post your message.  Even if you have a story about how Down syndrome changed your life, please tell me about it and I can post your short story.  I also hope to use some of these entries for my book, "Welcome to Our House".

Monday, July 19, 2010

My Journal - Week 48 (19Jul10)

Eureka!  We now have leak prevention!


After the many months of trying to figure out what to do in terms of Hunter's nightly leakage problems... I have found the answer.  I am hopeful that this will work, and I am going to try it out tonight.  I found (after searching high and low) that no stores have the traditional plastic pants that go over diapers.  And if you ask places where you would think that would have them, they look at you kind of funny and say, "what are those?"  I guess the people I asked were not children of the seventies....  Oh lord, I am dating myself again.  Anyway, there are diaper pants, they just don't call them that anylonger.  The new thing (and these are popular) are diaper wraps, that are traditionally used for cloth diapers, which are the new rave in this ecological crunch to save our planet.  These diaper wraps are not made of plastic (too hot for baby) these are nylon waterproof polyurethane wraps that are supposed to contain leakage.  I am very happy and hopeful.  I will of course be posting the outcome.  I am also posting a picture of these wraps with a link to Babies R Us so that no one will have to struggle to find these like I did.  And honestly, I am sick and tired of washing sheets every day because of leaks....

Click on Diaper Wrap image to see wraps.

They do have a ton of neat colours and designs, so if plain white is not your idea of cute, then you can have helicopters and aeroplanes!

And just for fun, I caught Hunter sitting under his Jumperoo, playing.  When I looked over at him, from my angle it looked like he was wearing his Jumperoo as a hat!  I just had to take the picture (as you know, any reason to snap snap snap...) and post it for you to enjoy!

[Do you like my new hat?  It's kind of big for me but I still like it!]

PS - 27 days to go before Hunter's first Birthday!!!

Saturday, July 17, 2010

My Journal - Week 48 (17Jul10)

The promised pictures from last nights daring escape attempt....

Here are the pictures of Hunter sitting and standing in the crib.  Keep in mind, in these shots, the crib had been lowered.  So if it doesn't look scary now, imagine it about a foot higher, and the top of the rail bar literally at his waist!

[I don't like being in here, it's kind of boring...]

[Ah ha... look what I found in here!]

 [Daddy gave me this bear, it's my first bear ever!]

[Mama!! MAMA!! ... Ya that's what I said!]

[If you tell me how to get out of here I'll stop pinching your nose....]

[Well, if I can't get out, might as well exercise!]

[Oh yea.  This is the way out, but I look guilty don't I?]

[Hummm, now that I'm standing, how do I get out?]

[No really, look Ma, no hands!]

[I bet if I look cute enough, you will come get me out!]

[I think I will just stand here looking good, I know my sentence is almost up!]

[Quick, better not turn your back, I have planned my escape!]

So, that is it in a nut shell for the crib shots.  I had never really taken any of him in there, so I figured a few would go a long way to figuring how much he has grown when he stands up inside there.  This is now how he looks when he stands.  It's so much different from last night, and is a million times safer lowered the way it is now.  The only problem now, is for me to figure out how not to hurt my back putting him down, and picking him up!  Well, mind you, at least when I pick him up and out, he can help now by standing!

Enjoy!

Friday, July 16, 2010

My Journal - Week 47 (16Jul10)

Are you scared yet?

Today was quite the day of fright for one mother alone to handle.  I am the first to admit, having a baby is full of joys and fears.  Triumphs and failures.  Bumps and bruises.  Laughs and scares...  But honestly, two in one day.... I am going to go grey before this week is through!

Hunter is a child full of wonder.  I know I have said this probably on many occasions, and now that he is crawling around, I have gone around and checked little things that I think he could or would get his little hands on and more importantly put into his little mouth.  I thought I had done a good job, even reading the old fashioned toilet paper tube rule that says, if it can fit through the hole of the paper tube, it can be swallowed and choked on by baby.  So, I diligently went around a while back with a paper tube and while it may have looked quite strange, I was putting things up to the tube to see if they would fit or not.  I figured in our T.V. room, I had pretty well gotten anything and everything that a little hand could put into a little mouth.  I want to say, never trust toy manufacturers.  Not that I do trust anything at all, but I figured that a toy designed for babies, would be safe.  I know after today, I have learned my lesson.  Hunter, now capable of getting into his sitting position all on his own, and literally motoring around the T.V. room at lightening speed decided to sit in front of his play cube (a large wooden box with an abacus on one side, a wooden peg maze on the opposite side, a xylophone on the third side, and a magnet board with large fun shapes on the last side.  Even our E.I. had said the shapes would encourage Hunter's dexterity with handling the shapes, so no one ever thought that those shapes would cause a problem.  Hunter had been capable of placing the shapes onto the cube and then removing them for about a month now.  He would hold them up, examine them by looking and mouthing them also - a typical baby action.  Today, as I was cleaning the table our T.V. room, I hear Hunter whimper, and then let out a little cry.  I looked over at him, sitting literally about four feet from me with the red circle standing vertically inside his mouth.  He had managed to pop the entire circle into his mouth but because it was so large, he couldn't get it back out by himself.  And the more he tried, the harder he clamped down on the circle.  Now, you can't imagine how scared I was when I saw this circle in his mouth.  The circle is so large, that he would never have been able to swallow it, but the mere fact that he had it inside his mouth had me terrified, and obviously had him scared also.  I took it out of his mouth, and he let out a fretful cry.  I was so angry at myself for believing that this large circle was harmless.   It didn't fit in the tube by any means, and therefore I thought it wouldn't be "dangerous".  Now, after all was said and done, no harm had come to Hunter, and there would have been no way for him to have swallowed the circle, but getting this darn thing stuck in his mouth was enough for me to put those away, for a long long time.

Here are the pictures of the magnets.


[I put a penny next to them for perspective]













[Here you can see it doesn't fit in the paper tube....]


Now, if that wasn't enough of a heart attack for me, Hunter the ever so smart and brave baby, decided that he would accomplish yet another new milestone for me tonight, but again, scared the "Crap" out of me while doing it.
I went up to our bedroom to change both myself and Hunter into our sleepwear.  Once I got Hunter changed I sat him down on his bottom in his crib, since the crawling has become an exploratory thing, I can't trust him on the bed for even a second with out me (and even with me he's so fast!).  He wasn't too happy to be in his crib while I was changing, but even through a protest, he managed to make his next milestone.  I turned my back to put my clothes into my laundry bin, and I heard "MAMA! MAMA!" very loudly.  I turned around and there was my son, standing up holding onto the front rail of the crib, leaning over it with one hand on the rail, the other reaching out to get me....  I swear I took one giant leap and yelled "Oh my Gwad!".  In the process of leaping to him, I guess I scared him too, and he fell backward.  He laughed at me and clapped his hands!
So there you have it, once again - our child makes yet another milestone of pulling himself to a standing position all on his own, and I missed it because I was putting laundry into my basket?!!  I know I will see it again, and honestly I knew he could do it, since he has been pulling himself to a standing position holding our hands everyday.  But, to see him do it all on his own would have been the best, especially catching the first time.  I wanted to put a picture here in the blog so you can see how he stands up with his hands on the rail, but I will have to do it tomorrow, when he's awake.  It was a good thing Hunter did this tonight, Lord only knows if he would have done it in the morning, to get my attention, and then toppled out of the crib as a result.  So, after that super episode, I got my tools out and lowered his crib nearly a foot down.  Now when he sits, he can just peek out, and when he stands, the rail comes up to his chest.  It will have to be lowered again probably sooner then later, since I am guessing it will only be a matter of time that he can swing a leg up and over....
Can you believe it?!  That's our boy.  Super star.   I hope he doesn't give me any more "heart attacks" though!

Thursday, July 15, 2010

My Journal - Week 47 (15Jul10)

The count down begins....

Today Hunter is exactly 11 months old.  You know, I always say it - time just literally flies by.  I don't even know where the time has gone, but I do know the results of the time are apparent.  Growing, talking, sitting, crawling, transitioning, standing and the list goes on.

This week Hunter is sporting another haircut, and these days the clippers are not his favourite friend.  The sound literally sparks his water works.  I now realize it is the sound he doesn't like, he loves getting his hair cut, just not with sheers.  I noticed the last time I got a new tattoo (for our little angel Taylor) and I totted Hunter along with me, he sat happily in his stroller until my friend Paige started tattooing.  The tears started and I wasn't sure why.  It then dawned on me that the sound of the tattooing is nearly exactly the same as the hair clippers.  He went from happy clapping Hunter to bawling baby Hunter.  Now, I know some of you must be thinking, what in the world was I doing at a tattoo place with my son.  The place I go to for my tattoos is a friendly clean and not your typical "tattooing shop".  As a police officer, (of which my tattooing friends know) I am obsessed with making sure things are on the up and up before I subject myself to their services.  I have known the crew there for years, and so has Daddy.  They all know Hunter, and have seen him on a drop in visit when he was just eight weeks old.  He loves the girls & guys there, and always offers them a wave and a giant smile.  Anyway, knowing that hair clippers cause this much frustration, I had avioded using them for a while, but with this hot and humid weather, along with the fact that Hunter's hair is the same as Daddy's (grows like a weed), I opted to do a number two buzz.  I braced myself for the crying, which when doing his hair is often louder than the noisy clippers, and did my best to do a fast buzzing job.  I managed to do (what I think was) the fastest hair buzz on record.  I did litterally five swipes over his head, and was done in under two minutes.  Some stray hairs were long, which sissors fixed up easily.  Now I have a semi-bald looking baby, but I know it wont last long at all.  I am not sure what caused Hunter to go from tolerant of hair clippers to full out crazy crying.  I guess it is just one of those things!  Hopefully he will grow out of the fear, and I think if I show him Daddy getting it done more often, he might be less frightened by the sound.  The thing is, I give Daddy number two buzzes nearly every three weeks, so I am not sure how much demonstrating I need to do to achieve that!

More importantly and finally, Mommy got the transition sitting on video!  Hunter had been transitioning into sitting from a crawling or tummy position for about a week now, but getting it on video was another story!
And it was perfect timing, since today the 15th, Hunter is 11 months old!  Getting the transition sitting on video took a bit of coaxing, (I demonstrated it for Hunter twice first) and voilĂ , he did it right after.  I was so happy for Hunter doing it on video, it was like I needed to have a celebration party!
This morning he was clapping happily while jumping in his Jumperoo, so I thought I would get him to clap for the video also, but it appears he thinks sitting for the video is enough for one shot, and quite honestly he's right.   The video here is 4 min 52 sec long.  Worth the five minutes to watch!

 
 Now, I am wondering when the walking will come....!

Monday, July 12, 2010

My Journal - Week 47 (12Jul10)

Inchworm, Crawling and now Sitting?

I guess it's true, things come in threes.  Just the other day, Saturday to be exact, I was packing my bags for our stay at a hotel this past weekend for my cousin's wedding.  While I was busy packing, Daddy was watching Hunter on our bed.  One minute I saw him on his belly the next I come back into the bedroom and he's on his bottom sitting up.  I made a comment to Daddy who promptly tells me, he thought I knew Hunter was doing this already.... He was?  Daddy had just witnessed Hunter transition from tummy and all fours to sitting!  How exciting... but yet again, I missed it. Boooo!

So, onto our weekend.  We had a fantastic time at my cousin Andrew's wedding, he was amazing and his bride Raji was beautiful as ever.  I was lucky to get a few (330) pictures of the event.  I have a few that I will post today, of what I like to call "The babies four".  I will post more later this week, as these first ones are from Grandma's camera.  My 300 pictures are on my professional camera, and I have to go through them all first.
While in our hotel room, we witnessed Hunter crawling on the bed, a great sight!  It is definitely a modified crawl, which I like to call the inchworm-commando crawl, and though it is funny it is definitely his newest method of travel.   Fast-forward to today, I brought Hunter down stairs to get him his lunch, and I put him on his hands and knees to play while I went into the kitchen to get his food.  I came back into the family room and was talking to Daddy on the phone.  I heard Hunter banging on his Leapfrog drum (which Aunty Melissa bought for him) and I hear him banging on it, but it isn't making any sound.  I remembered that I had turned it off last night, and I went over to turn it on for him.  Without even realizing it, I bent down to turn it on and walked back to the couch, and then it hits me.  Hunter was SITTING down with the drum in front of him.  I turn to look at him, (he's happy banging away now) and ask him, how did you do that?  I know I didn't put him down on his butt, I put him down on his tummy!  Well, I guess he's figured out he doesn't have to wait to show me that he can transition to sit up by himself.  (Side note:  all those PT sessions that we do with him, that Jenn showed us to do when she's not here obviously paid off.)  And with that, I am desperately trying to get this latest achievement of transition sitting on video.  He has been able to go from sitting to tummy for quite a while now.  I did manage to get the Inchworm-Commando Crawl on video, but you will have to keep in mind, I recorded it after watching him do it rapidly four times before, so in the video he is pretty tired of doing it.  But first, here are some pictures from Grandma's camera at the wedding:

[I am having so much fun, this is my first wedding!]

[Don't I look dapper!  And yes I was a good boy for the whole thing!]

[We are the babies four!  And of course our mommies too!]
[Hunter 11mos, Sophia 13mos, Alex 6mos, & Rosie 2mos]

[Did someone say clap?  I was clapping for everyone!]

And here below is a video of Hunter doing his Inchworm-Commando crawl, to Grandma and Daddy.  The object he is chasing is his Playskool Horsey on wheels!  Crazy thing keeps rolling away....
And you wont believe this, as I am writing this entry, Hunter decides to try and sit again, and I had to quickly grab the camera to record it.  But as usual when Hunter knows he's being recorded, things come to a halt.  I got most of the attempt, and he got most of the way into sitting, but decided that he'd rather go back to his tummy.  Oh well, I will get the full version sooner or later for now, it's just the preview!  And in the meantime, you can watch these two cute videos!

This is Hunter's new way of getting around. It started off being just an Inchworm attempt. Then later he tried the Commando crawling. Somehow he merged the two and it became the Inchworm-Commando Crawl. Yeah for Hunter!

Would you believe I was actually able to catch an attempt on video? I asked Hunter to show me the sitting, and sure enough he did. You can additionally hear Grandpa in the background making his request too.  What a talented boy. Hardworking and obviously tired out from demonstrating to me for the last hour!

Hopefully these pictures and videos were worth the wait.  They were for me.  And, as promised I will get those other pictures from my personal camera posted as soon as I can.  There are lots of great shots of Hunter and Daddy.

Wednesday, July 7, 2010

My Journal - Week 46 (07Jul10)

Ready, set, print!!! - UPDATED (18 August 2010)

I wanted to show everyone a sneak peek preview of my book, "I Have Down syndrome, What Does That Mean?"  I have just approved the final layout of the cover today with the publishing company.  I am so very excited and can't wait for the book to complete it's final stage - the printing stage.

I hope that you all will be interested in pre-ordering a copy of my book, if not for your own children, for other children who you feel may benefit from reading this enlightening and educational book.  All orders placed before the official release of this book (August 31st, 2010) will receive a special promotional price of $22.00 CAD per book.  As of the 1st of September 2010 the regular price will be $25.00 CAD each.

To place a "Pre" order you can either contact me directly through email (suggested if requesting more than one copy) at: tkd73@sympatico.ca - Please provide your Name, Address,Quantity of books required, Contact phone number and Email Address so a PayPal request can be sent to you.  Or use the PayPal button below to order and pay all in one step.  (A safe and secure way to purchase my book.)

Click on any of the three images below to order:

(first book cover image is for "Email" orders)














(Second book cover image is for "Publisher" orders)
Not yet available (will be ready after release date).



-OR-











 

(Click on the PayPal button below)








Please note, the purchaser is responsible for the shipping fee(s).  Available methods of shipping are Canada Post and or UPS.
These options for ordering will be available on my Sandi's publications page located under my Welcome to Our House banner at the top of the blog.

All updates with respect to the final release date will be posted as soon as I have a confirmed date.

Monday, July 5, 2010

My Journal - Week 46 (05Jul10)

Fun is so contagious, but mastering skills are even better!

I wanted to post a few new pictures of Hunter, (as I always do) but more importantly Hunter was caught on camera finally able to hold his "roll-alongs" ball in one hand!  Quite a feat for extra tiny hands with extra tiny fingers!  Parents of children with Down syndrome know all too well that having the characteristic of smaller hands and fingers certainly makes holding onto objects that other children might be able to do sooner, a bit tough.  And so when holding something like the size of this ball is achieved, it's another (albeit tiny) milestone.  Yay!

 [What's this?  Oh, my ball!  Does this mean we are going to play?]

[Look at me!  I am not only holding it, but it's in one hand!]

[I can do it with two hands also!  Do you want to play ball with me?]

[This ball makes me so very happy and I love playing!]

Please excuse the cropped out chopped off heads.  Honestly, I do take normal photo's but as silly and sad as this sounds, I have purposely not included the faces of my step kids in Hunter's photos.  It certainly wasn't my choice to exclude them, but I do have to respect the wishes of their mother as I do not have her permission.

Anyway, at this moment we will celebrate the great accomplishment of Hunter's small hands!  While it may be a "small" thing, it is the finer motor skills that are being practised and mastered here!  Of course, always more to come!

Sunday, July 4, 2010

My Journal - Week 46 (04Jul10)

They say kids give us grey hairs, do parents give them to kids?!

I was looking at Hunter's hair today, something I do everyday - he has the most wonderfully coloured hair.  Brown, blond and sometimes even reds.  But today, instead of finding an acceptable colour, what did I find?  A grey hair.  Now, you will have to understand, at one time Hunter had a really blond hair that one cousin said looked like a grey hair but after a few months that (patch) darkened up to a more brownish colour as babies with blond hairs tend to do.  Since I saw that patch of blonds every day, I knew it wasn't grey.  What I saw today floored me.  I found a single, wiry, course, absolutely grey hair.  There was no doubt about it, it was grey - silver grey.  I decided, despite it being odd, I was going to remove this terrible looking, out of place single grey hair from the head of my 10.75 month olds head.  And so I did.  I also decided that since it was such an unusual thing, I taped it to a black piece of paper, dated it and put it into Hunter's baby book.  I mean, who wants to forget something like that?  As I am doing this, my mother in law tells me that John (Hunter's daddy) also had this strange event happen to him at nearly the same age.  So decidedly this is a genetic ordeal!  While she begged me to leave the hair alone, since it was "one more Daddy-Hunter thing" that they shared in common, I decided that Hunter could do without the premature ageing at less than 11 months old and so I removed ever so delicately.  He didn't even know that I had taken it out.  The more important question at this stage is, are we giving our son grey hairs??  I certainly hope not!  And I am not quite sure if you can call this one a milestone....

Something else I have discovered on Hunter a few weeks ago, was a tiny white patch on his tummy, just above his belly button.  When I first noticed this loss of pigment, (and as funny as its sounds, Hunter is pretty white despite having a olive complexion Mommy and white Daddy) I laughed because I have the opposite problem, I have about three cafe au lait spots (brown pigmented patches).  One spot didn't really concern me, but about two weeks ago I noticed yet another white loss of pigment patch, and then a few nights ago I found a third spot.  I decided to look up what these types of spots were called and I found out quick quickly that the pigment spots are called Vitiligo.  While it appears that these pigment spots are just as harmless as my cafe au lait spots, I decided to research whether this is something that occurs more often in those who have Down syndrome.  And lo and behold, this is what I read:

"Vitiligo is a loss of pigmentation of the skin in well-defined areas. It may occur anywhere on the body and at any age. Vitiligo is not a common problem in people with DS, but is still more common than in the general population. The cause is unknown, but it may be caused by autoantibodies destroying melanocytes, which are cells in the skin that produce pigment."

This was definitely interesting to me, and I can say this was definitely something I had not read or heard of before!  I just hope that it doesn't progress too much and that Hunter doesn't lose what beautiful colour he has now, as he definitely has such a wonderful "colour" to him.  I did find out that the "treatment" so to speak is to use sunscreen liberally as the sun or sunburns can contribute to Vitiligo.  Something in addition that I read but don't put a lot of stake into was that one website suggests that Vitiligo and Grey hairs are linked.  Possibly this may be true, but for now, I think the grey hair was a random occurrence and I will keep an eye out for any more "grey hairs" and "pigmentation loss" in our cute little Hunter. 

Saturday, July 3, 2010

My Journal - Week 46 (03Jul10)

Another home-run scored for our team....

I talk about this often, and I will contine to do so as long as there is positive change.  Recently New York has fallen in line with the fight to abolish the term "Mental Retardation".


People Before Disabilities:


"New York will finally update the name of the state office charged with ensuring fair treatment and quality-of-life to people with various developmental disabilities, not just by taking the "r" word out of the title, but by adding "people" to it.
The Office of Mental Retardation and Developmental Disabilities will now become the State Office for People with Developmental Disabilities, after votes taken last week in the state Assembly and Senate. The name change was originally introduced last year by Gov. David Paterson. Rhode Island remains the only state to have "retardation" in an agency title."


Read more here:
http://polhudson.lohudblogs.com/2010/07/13/state-disabilities-agency-bids-goodbye-to-the-r-word/


In my personal struggle, I am hoping for change (using the "r" word) with a company called ADAM.  They are a medical resource corporation who provide literature to people, companies, websites etc.  In there literature describing Down syndrome, I am sorry to say they utilize the "r" word, and I have been trying to get them to change this because their literature is used by MedHelp, the organization I volunteer many of my personal hours to on a daily basis.  Because I advocate about Down syndrome, and I respond to many people who have questions regarding prenatal testing, risks and odds and obviously about Down syndrome itself, I rely on MedHelp to have the proper positive literature and not in effect "poisoned" with negativity from the term "Mental Retardation".  I had contacted ADAM earlier this year (using a standard "contact us" web form) and had no response.  Today, I have re-established contact with a newer more personal direct email, and I am now more hopeful.  I will definitely report on whatever the outcome is with respect to ADAM, and essentially MedHelp.  I am hoping that I have success.  It's definitely a battle worth pursuing, if not for Hunter, for everyone affected by that negative term.

Thursday, July 1, 2010

My Journal - Week 45 (01Jul10)

Happy Canada Day!

It's one of the first times that Hunter has seen fireworks and actually enjoyed it!  Because our house backs onto a conservation area, many families put on fireworks back there for special occasions like tonight - Canada Day.  While the fireworks were loud, Hunter enjoyed them, smiling and watching the fancy colours shoot up into the air.  During the firework display, Hunter decided that he would eat a treat or two, his Gerber Wobbly Wheels.  Hunter is very capable of "self feeding" but rarely likes to demonstrate that he can do it by himself.  Tonight, I was able to catch him in the moment of feeding himself.  I tried to get a few pictures, but he ate the darn thing so fast  I could only manage to get one shot. 

[Quick Mommy, better take the picture - I am almost finished!]

I had a few other pictures that I forgot to add in from our trip to Sudbury on Monday.  While not the greatest trip, (since it was not for pleasure) I had taken a few quick shots of Hunter.

[(Waking up in Sudbury)] 
[I don't want to be here, I miss my new car seat!]

[Oh okay, it's not that bad... but can we go back home now?]

[Do you know what I am doing? I am eating Mommy's muffin!]

[Nahh those aren't crumbs on my chin, it's just your imagination!]

[Mommy, stop taking pictures and give me some more muffin!]

[Thank goodness, I get to sleep on the way home....]

Mommy note:
A tiny memorial to our lost angel who we named "Taylor".  A little note I wrote to our "angel" that will go into a memorial box I put together for Taylor.  It reads:

Taylor,
Would you know my name if I saw you in heaven? – Eric Clapton

You were made out of love, you will always be remembered the same way. You are our tiny angel, your brothers guardian angel and protector and will always be in our hearts.

We lost you before having the chance to meet you and hold you in our arms. But we will always hold onto the love we have for you.

Mommy & Daddy want you to know,
We miss you so very much, each and every day,
our tiny angel – Taylor Graham McWade

And to our Taylor I dedicate this song:


And one last picture that was important for me to add:

[My Mommy loves me very much, and I love her and her necklace!]
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