Welcome to Our House

My Journal - Week 126 (28Jan12)

2012-01-28T05:47:00.000-05:00

New Feet for a New Year!

I know it's been a couple of weeks since I last wrote in my blog however I can say my only reason is "wind down" time. Last month we decided to ask Hunter's Early Intervention therapist what we could do to help Hunter with his "walk". Even though Hunter has been walking very proficiently since he was 17 months old, I have been finding that he is sometimes "tripping" over his won feet for lack of a more scientific term. With hypotonia, ligaments and tendons are loose at the best of times and it's something that Hunter wont really grow out of but rather have to "manage" all his life. Jennifer mentioned that we should have Hunter's feet viewed by a specialist through a "gait" clinic. We took Hunter to see walking specialist Maureen Luther from Sunnybrook Health Sciences Hospital who made it possible for Toronto Orthopedic Doctors to assess and then make a prognosis for Hunter's feet. It was decided that Hunter would require a special casted brace (orthopedic appliance) that would help Hunter achieve normal stability in his ankles and arches. These special orthotic shoes (more like a foot brace) fit on his feet and then slip into shoes for a perfect fit. The process however while simple and painless was daunting for poor Hunter who attended during a critical nap period of the day. Imagine having your poor tootsies wrapped in casting materials, dunked in water and held firmly by unfamiliar hands. Quite upesetting for a 2 year old. A few thousand tears later, we were done and waiting one month for the perfectly custom "Hunter" moulded feet to be ready.

Yesterday was the day. We returned to Sunnybrook, with a fresher happier Hunter (who didn't have to be pooked or prodded) to be fitted with his brand spanking new orthopedic appliances. Did I mention that they allowed me to submit images (any one I chose) to be branded right into the material which made his custom feet? Yes, being the photographer that I am, official "Mammarazzi" I supplied them with only the cutest "Hunter' photo I had which could be plastered all over his neat new feet.

We met with Maureen and Chris (the doctor who originally casted his feet) and Hunter diligently allowed Chris to "fit" his new fancy feet. I guess seeing his own photo on his new "threads" was helpful and partially responsible for his good-nature'd smiles. We test drove "our" new feet up and down the halls with serious gusto. (Sorry, I didn't manage to take any 'test walking' photos despite having my camera on hand.) We were then instructed to purchase a new set of shoes to accomodate these new braces since his old (new) shoes would not accomodate the extra width and length of the braces. That kind of sucked since I had just bought these great recommended shoes called Baby Botes from a store called Three Little Pigs. (Those shoes, for the record are around $100 and are great if you can not get assistance to pay for these kinds of orthotic devices). I know many of you might be gasping at the sound of $100 for baby/toddler shoes, but let met tell you why that isn't so bad.... The appliances we picked up today are not cheap. While we get a 75% brake from the Canadian Government (called Assistive Devices Program) the 25% that we parents are left to pay up, is to a rude tune of $441.50. Yes you read right, that is the 25% we must pay after Government discount - if you can call it that. According to the bill, the devices cost $1766.00 Canadian Dollars. No joke. So, currently I am out this money until I submit it to my own personal work insurance plan. Even then I am sure they only pay a mere 60% or some ridiculous menial amount. Don't get me wrong, funding is available, if you qualify. That though, is another story and includes a long waiting list.... Another post for another day.

But back to Hunter's new feet. Immediately (once wearing his new orthotic braces) I noticed a difference in Hunter's walking. He was picking up his feet, striding much better and definitely much more stable. I didn't think it would be "that" noticeable, but it was. A lot can be said for those loose ligaments. What I want to mention is that clearly, it is imperative that young feet get this kind of attention early. The longer a parent waits to get "help" for their child's feet/walking, the more damage (permanent loosening) could potentially be done to ligaments and tendons that is or can be irreversible. Here are a few photos of his new shoes and custom braces. I guess the good (but hardly evening) point is that all future shoes that we buy to fit the orthotics (or accommodate them) we were told to buy from Walmart or PayLess Shoes. There is (now) no need to invest in costly shoe "shells" to hold the braces.

These are the (what should have been dipped in 24k gold) orthotics!

Pretty snazzy, huh!

A closer up look at the nearly two thousand dollar braces....

Hunter is all over the orthotics - with some obvious "L" & "R" directions.

This is how we insert the inserts - only Hunter is in them first.

And a photo shoot of the new "Champion" shoes we picked out from PayLess Shoes.

Hunter loves his new shoes!

I always manage to say, 'watch for my next post' most times with the intent to post missing elements - such as a photo of Hunter running in his new orthotic apppliances but life often gets in the way. So, I think I will aim for a general photo collage of the kids in my next post - since there are some really neat "mommarazzi" photos that I really would love for you all to see! Think of this image, a cute Hunter wearing his new Christmas present (A toddler super cape) and a sweet Hayleigh asleep on Mommy after a long night.... To come.

My Journal - Week 124 (02Jan12)

2012-01-02T05:19:00.000-05:00

MERRY CHRISTMAS, HAPPY NEW YEAR, HAPPY HOLIDAYS TO EVERYONE!

I don't have great excuses for not posting during these festive weeks, except that Hayleigh was in the hospital from having had Pneumonia, Hunter had the stomach flu (which has turned into the chest congestion flu), our Holland Lop bunny "Squeaky" had an advanced progressive brain disease called Pastorella (which required that we put her down), my wedding band snapped at the base where it was originally cut for sizing.... and then the usual obvious - hectic crazy last minute shopping, wrapping and delivering of gifts, traditional Christmas Dinner with Family at my Cousins home. Welcome to my "crazy" life. Did I mention my daughter still believes night is day and day is... well day?

Many more "crazy" things have happened, which for the record made me conclude that "Murphy" (as in Murphy's Law) should be removed from my "friends list".... BUT, where there has been discord, there also has been insurmountable joy, watching my two little babies enjoy Christmas. This year Hunter "understood" what was happening and it was wonderful for me to see him finding that joy in opening gifts and seeing his eyes go wide with excitement with the realization that he now has "new" toys to play with! It was also amazing to note that Hayleigh's first Christmas was filled with love and closeness of Family and Friends. I'd like to take a second to thank everyone for the lovely gifts that my children received. Each one was obviously thought out well and with my kids personalities in mind.

On a more personal note, I have renewed my passion for taking "professional type" hobbyist photographs - Believe it or not, besides being the "Mommarazzi" that I am, I love to photograph more than just my family. Did I mention I discovered that the term "Mommarazzi" which I thought I coined last year with my girlfriend Penny, already exists in "Print"?! Someone wrote a book in 2009 and published it. It currently sits on the shelf in the photography section in Chapters. I did NOT purchase it.

I decided that I would only post my more "professional type" images in my websites: Random Moments Photography (Blog & SmugMug) and keep my more intimate Family photos in here - Welcome To Our House. So with that in mind, here are some more recent photos of the kids and Christmas.

They look alike....

Last minute shopping....

I'm getting fixed up for Christmas

Daddy and I are getting hair cuts!

Thought a brush might work.

Check us out! The final products!

Mommy let us open our stockings before Christmas dinner!

It's awesome! Thomas Train!

Thomas note book and crayons!

I need a little help opening this!

Hayleigh opened her stocking....

Santa brought her some goodies!

I think she likes the string though....

She's concentrating very hard on her stocking.

I like the pretty purple ribbon.

I'll give my Thomas Train a big Kiss!

Dinner time! Yum, Christmas Turkey!

Uncle Andrew is showing Hayleigh the Christmas Tree!

Christmas Crackers are for pulling, not eating Hayleigh!!

Check me out! I am getting down to "Party Rock Anthem", my new fav song!

Hayleigh saying Goodnight to Great Aunt Daphane

Finally home. A quick story from Daddy's new book before opening gifts.

Some of our many wonderful gifts!

I apologize for the literal and actual bombardment of so many photographs. I know many of you have been waiting to see them. I hope this put a smile on your faces, it certainly did mine - except that I created this post at 5:17 am. Such is my life!! And so now - I bid you a temporary farewell and to all, a good night!

My Journal - Week 121 (12Dec11)

2011-12-12T06:51:00.000-05:00

Flashback to the DDSA 2011 Christmas Party

This post is slightly bitter sweet for me. Firstly, I'd like to say - My family had a fantastic time at the 26th November 2011 Durham Down syndrome Association Christmas Party. Being the Executive Director and Acting Vice President of the DDSA, I was only minimally involved with the actual Christmas Party Committee (who did a fantastic job of course) but I knew of the details and "going's on" regarding the planning of this wonderful event. My girlfriend and her husband (however) are the Directors of Events and I must say, did a mighty fantastic job on the finer details that I was not a part of. At the event itself though, I did decide to bring my Nikon camera and ended up taking several (140) photos of each and every child with Santa as well of course, several of my own children. What else is the "Mamarazzi" (that's me) to do? I love photography.

The second half of this post is the unfortunate bitter part to the sweet. It is with a heavy heart that I must say "Goodbye" to the DDSA as its Executive director and acting Vice President. While I have inundated myself with several projects and life in general, there are only so many things I can "pull off" while still keeping two key components (my sanity and family) intact. The actual work load was never the difficulty for me, (I enjoy things busy and hectic) but there were a few unpleasant circumstances that I had to deal on more than a few occasions, during my short tenure. In any other "paid" environment - some might just "grin and bear it" but in the world of freely volunteering, I couldn't just stick my head in the sand in ignorance. Without getting into the nitty gritty details, sufficed to say, I was displeased with a few of the occurrences and being that I am a boisterous and extroverted person at the worst of times, I couldn't hold my tongue. Sometimes it takes a bigger/braver person to speak up and know when things "just aren't right" and need to be straightened out. I do not live by the philosophy "ignorance is bliss" (fortunately?) and as such, when there's something "not exactly right", it behooves me to do something about it. On the flip side to this type of thinking, it can cause unwanted waves if there are those who believe that boats are not meant to be rocked.

Having said all that, I did want to post a few of my favourite 'fun-tastic' photos that I took during the three hours we were there having Fun fun fun!!

(Note: Hunter has an older girlfriend who affectionately refers to Hunter as "her boyfriend" - her baby brother attends my YMCA Play to Learn Play/support Group).

Who me?

Thank goodness he's holding Hayleigh....

It's just the beginning they said!

Phew! Santa's making his rounds!

A dance with "my girl"!

No-one else but Franny and Me!

We'll boogie the afternoon away!

Check us out!

Shall we go for a walk?

Yep, just the two of us....

Hayleigh & Santa

Not liking this Santa lap thing

Humm, well I'll tolerate it just to tell him how good I've been.

Mommy has a gift for Santa??

Ahh! She just wanted to tell Santa what she wanted fro Christmas!

My Journal - Week 120 (09Nov11)

2011-12-09T03:32:00.000-05:00

The Things He Says.... (On his own terms, of course)

I know that Hunter's vocabulary is (what I refer to as) "a Shy Vocabulary". Once we deemed him a "silent learner" it wasn't much of a stretch to guess that he would be the kind of child who wouldn't preform on cue, who would only do things when 'he' was ready, etc. etc. etc. Well, today was proof of these facts.

I made Hunter a picture book more than a few months ago, with photos of things in our home (common to him) such as, a photo of myself and the rest of the adults in the home, his favourite toys, his favourite foods etc. While we have several books (with the very same things) it was more personal to Hunter to have a book that Mommy made with "real life Hunter things and examples". In the beginning, we would sit down with the book, turn the pages and say the items on each page. Repetition repetition repetition. I guess, without having a parrot or mocking bird, it was difficult to gauge just how much Hunter was "learning" from me. Well, the parrot decided to just "speak up" today and tell me ALL the words in his book!! And if that wasn't shocking enough (for one day) he also - after saying "bib" while pointing to the photo, ran to the couch and promptly picked up his bib and brought it to the picture then gave it to me. I hardly give this example descriptive justice - he literally pointed to each and every picture, and said the word. It went something like this: [pointing to apple] "apple", [turn page - pointing to ball] "ball", [turn page - point to bib] "bib" (run get bib), [turn page - point to shoes (his favourite new word)] "shoes"... he stayed on this one for a while, all the while saying "shoes, shoes, shoes".... then to the best one, (yes it gets better) [pointing to the brush] "brush" and mimicked brushing his hair!! And so it went, on and on, over and over.

Is wasn't simply a matter of the words, it wasn't a matter of the comprehension, it was the fact that we (his EI Jenn and the whole family) had been trying to figure out how to teach him matching (moving from the vocab stuff for a while after a few months of demonstrating lack of his interest) and yet he very stubbornly and defiantly showed us in no way was he willing to do matching (he threw the cards at Jenn the last time she was here in a very typical two year old kind of way). So, when on HIS OWN TERMS, he decided to show us this, (as it always happens) it made me laugh and sigh. This is just the way Hunter is. Shouldn't I know this by now?

Hunter is getting close to the point (where I believe Girls just differ and do this much earlier based upon gender) of wanting to do the "let me" stage. He is much happier to try and do things for himself now, where as before (even though all the while capable) he wanted Mommy or Grandma and Daddy to do "it" (various things) for him.

I am delighted that these progressions are on going, sad that it means he's growing up fast, but satisfied that he's happy and not pressured or feeling as though he's been made to do things that are no longer fun. It's hard to prove the many things we see on a daily basis to those who need to see him do these things, when they are short lived and he's a genuine camera ham. Do I dare whip out the video camera or digital SLR? Nope, my son is my son and knows full well that his mother is the official Mammarazzi. With that said, it's hard to get natural stills of my boy - he's a glamour child who lives for the camera. Did you know he's got the word "Cheese" down pat?? I wonder why..... I don't even say a word when I begin to take a photo, Hunter just pipes up automatically, "Cheese" when I snap a photo. How sadly and delightfully appropriate all at the same time.

Anyway, much goes on with him daily and it's hard to just squeeze it all into one post, but these are the main things as of late and I thought to include a few photos (of both kids) from recent days.

Just for the record - It would appear that Son's do look like their Daddy's....

I will brush my own teeth, okay Daddy?

Let me try this "Prunes and Oats" thing...

Ohhhhhh! Taaarrrrttttt!

Oh ya.... TART. (Note: Hayleigh did this after each & every bite)

My little girl sitting up by herself....

Having fun seeing what sitting up can do..

And just for fun (each time) throwing herself backward and laughing!

Sitting with Santa and the Durham Down syndrome Assoc. Christmas Party

A fun moment playing in her bassinet

And then caught on film "looking"!!

Keep checking! And PLEASE - Do visit my new Photography Blog... http://www.randommomentsphotography.ca
My RANDOM photography IS for sale through another site (also linked to the new blog) or visit directly here: http://www.purelyrandommomentsphotography.com

Comments are always welcome and encouraged.

My Journal - Week 117 (13Nov11)

2011-11-13T23:30:00.000-05:00

This Sunday was ALL about "DDSA" Speech!

Speech is a very integral part of life and having Down syndrome can sometimes complicate speech in various ways. Delays in speech are often one of the the most troublesome problems for many youngsters with Ds and other times, hearing issues and as well as low muscle tone can complicate speech further.

We (the DDSA - Durham Down syndrome Association) decided to create another partnership event (our 2nd one) with our local speech pathologist to provide free Speech Assessments as a service to our Association members with further sessions at 50% off (paid for by the DDSA). Jill Clements-Baartman is the Owner of TLC (Talking Language Communication) and she is a dedicated Speech Language Pathologist. She has also been Hunter's "speech path" since he was about 18 months old.

When we first learned about Jill, we decided to take Hunter to see her for an initial assessment to see where he was with "language". At that assessment, Hunter was doing great and did not need any additional services in terms of speech but I knew that we should definitely re-visit that area again for a future follow up assessment after he turned two. With this partnership we had created through the Association (making "speech" a priority event for our members) I decided to take advantage of the very same service we put together and get a new "FREE" assessment for Hunter. Turns out, we are still on track, falling in the ranges of what is considered typical in terms of speech for our son.

Even BabyCentre advises parents not to panic if their toddler (aged two) isn't speaking the way other children are, charts or people in general think they should.
BabyCentre says:
"Don't rush to consult a speech therapist if you have no idea what your 2-year-old is saying half the time (or if you understand perfectly, but Grandma and the babysitter are baffled). Speaking involves a lot of coordination. Kids this age commonly lisp, stutter, and mumble. But certain speech problems are considered red flags. If your child never imitates your words or speech patterns or drops particular consonants consistently, mention it to her doctor. "

EVERY child is different when it comes to language, expressive language and communication. It is important not to panic and to know when one should have their child assessed and also if there are obvious delays with language. Things to consider are, is the child mimicking language and sounds? Is he or she expressive? Is he or she communicating needs in other ways? Is your child using more or different consonants and vowels as time goes on? Is there an obvious and excessive amount of frustration in your child due to lack of language? Ranges are normal and obvious in the general population, as they are within the Down syndrome community. Parents have to remember, their child will talk - it's only a matter of time. I believe "How" they talk is what parents should focus on rather than "when". To me, pronunciation and building vocabulary should be more important than worrying about how quickly their child starts speaking with more than one or two word combinations. As well, it's key that we don't frustrate our children (and ourselves) with trying to push language in a way that is counter-productive and possibly hindering.

Here is how our DDSA assessment went during "fun time":
(We went together with my Girlfriend Penny and her Son Vaun who also has Ds)

I'm waiting for my teacher Ms. Jill!

I've been here before and we had a blast!

Some fun and colourful cards for me to see before we go in.

Since my Buddy Vaun is with me we get the BIG room!

Look at me! I'm a STUDENT!

Uhhh, I wonder what that is up there?! (A Toy Holder)

Hey Vaun, let me show you how it's done!

Yes! That's it! Let's make music!

What on earth is this thing?! It rolls and makes sounds....

Time to put away the toys for the day.

Ms Jill is talking to us, helping us to learn!

I'll show Vaun his belly - I can teach too!

They all are lying down! Maybe I should lie down too?!

I'm getting good-bye kisses from Ms. Jill!

And I'm giving Ms. Jill a good-bye kiss back!

My Journal - Week 115 (03Nov11)

2011-11-03T21:14:00.002-04:00

Down syndrome Awareness (week) is about Educating.

I usually spend my spare time (and other time) teaching and educating those who want to know about Down syndrome. With this first week of November, it was very important to me to do that little bit extra in terms of "educating". So, with it being a week of Awareness, I was very flattered when Dr. Meghann Lloyd (Asst. Professor) of the University of Ontario Institute of Technology asked me to present and teach to her 4th year university students taking a course called "Motor Behaviour and Developmental Disabilities" through the Health Sciences Faculty.

I spent 2 hours talking to her 4th year students about everything relating to and about Down syndrome. These students (for all intents and purposes) will be working in the health care industry in one respect or another. Either, working on Doctorates, Nursing, or Clinical Health applications such as Kinesiology.

Together with Hunter (and John) our presentation was a huge success! I believe that having Hunter there brings a type of realness to the presentation that would have otherwise not have been there and just been a "talk". Everything went so well that I have been asked to present every year (for the same course) at their University. Interestingly I have also been asked to teach at the University of Toronto by my Family Physician Dr. D. Mark who happens to be a Medical Board Director as well as a Teaching Physician.

I thoroughly enjoyed teaching that morning - Teaching was an original career choice when I went to University so long ago. Now it would seem I am just teaching where ever I go or work!

I am educating a different crowd (future health care practitioners) and it is my hope that in doing so, it will break barriers and also prevent misguided and often prejudicial information to the people who need it most - patients and new parents.

My Journal - Week 115 (31Oct11)

2011-10-31T23:59:00.002-04:00

HAPPY HALLOWEEN EVERYONE!!!!

How was your Halloween? Ours was fantastic from the Sunday to the Monday evening! Check out what we did for our weekend.... (There are more photos in my Facebook album - 44 to be exact).

Cupcake for me??

Roar!! I'm a Dragon, Vaun's a Dragon... we are twins!

Daddy... can I have another cupcake?!

Roar!! I'm an awesome Dragon!

Family Portrait Oct302011

Check me out... I can fly!

What? This horsey doesn't like Halloween?

If you look real hard you can see me on the Wagon Ride!


Knox Pumpkin Farm - The end of the day

AND FOR THE BIG DAY... HERE ARE MY PRECIOUS TWO!


A Scary Pumpkin - Miss Hayleigh!

Happy Scary Pumpkin!

"Roar"... Yes I like to roar!!

THE LOOT

THE LOOT PART TWO!!

Hunter after Trick or Treat... "Daddy?? Wanna go again??"

"Umm Daddy?? You okay? We don't have to go again...."

Yay for Hayleigh! Her 1st Halloween!

Looks like Hayleigh loved it!

Another sucessful Halloween for everyone! Mostly for Daddy, who gets to eat all the candy. Maybe if Hunter is lucky, he may get a Doritos chip or two from Mommy! And, I don't think Hayleigh was ever the wiser or upset that she wore Hunter's first year costume - It's all about sharing after all! Fortunately for Hayleigh, it's not always going to be about "hand me downs". This Christmas we got her a new personal outfit... since (a) Hunter (at three months) wore a newborn outfit which would NEVER fit a 16 pound 4 month old baby named Hayleigh, and (b) she needs a girly Christmas outfit - not a boys!!

My Journal - Week 114 (29Oct11)

2011-10-29T02:20:00.033-04:00

MY CUTE CUDDLY KIDDIES!

I spent some time these past few weeks taking photos of the kids - some of just Hayleigh (professional shots like the ones I PAID to have done for Hunter back in 2009) and some of them together, not professional style. I had originally wanted to do the "brother, sister" shots as professional shots, but Hayleigh stopped co-operating after about 20 minuets of her own shots!

Never the less, here are some new photos of the kids. (The first set are just taken with my iPhone). It's not what you take them with, it's how you take them.

I love my Sister... does she love me?

I'll just give her a kiss, see if she likes it!

Hey! Looks like it worked, she likes it!

Now we are both very happy kids Mommy!

Aww, I am such a good big brother, Hayleigh wants more kisses!

Looks like she's just going to come give them to me now!


You are such a good baby! I do love you too!

Here are Mommy's very own personal PRO Shots of Miss Hayleigh. Hummm, maybe I should get into taking photos of babies... wouldn't hurt! And it's very lucrative! Have you any idea how much they charge for a photo session and their packages?! Every new parent gets hit up with that charge and not many parents would say no... when it's their first baby! Tell me what you think of my photo taking... keep in mind - I did it in less than 20 minutes.

Like this Mommy? Is this how I pose?

Hummm, Mommy says this is my pink bear....

What is this basket thing? At least I have my bear!

I'm so cute...

My blankie tastes good!

Ohhh! Don't eat the blankie!

Aren't I pretty?!

So much fun!

Now that's more like it!

I got you now Pink Bear!

Uhh, Bear? Where are you going?!

My Bear is so nice!

Check me out in the basket again!

My casual shot after the shoot is all done!

And just for fun, two of the professional shots that were taken of Hunter when he was just 8 weeks old!

Hunter: Me and my rubber duckies!

Hunter: Me and my First Teddy Bear!

And how weird is it that Hunter had (and still has) more hair than Hayleigh, when it specifically says, babies with Ds have less hair than typical babies and much more sparse hair in general. I guess someone forgot to tell Hunter this.... He had a full head of hair when he was born - so long it was touching the back of his neck when came into the world. Hayleigh is still missing her hair to this day... we are hoping for a growth spurt for her hair since the rest of her doesn't seem to have that problem!!!
Oh and just for the record, Hayleigh beat Hunter with her teeth. She has two teeth already which came out at less than 4 months of age. Hunter wasn't that far off mind you, his first one did pop up/out 3 or 4 times at four months (called a floating tooth) but didn't come in permanently until he was about 6 months old. I think it maybe time to stop breastfeeding Hayleigh too, as she has no qualms about biting me... AND LAUGHING at me after I yelp when she does it!

I would love your honest answers to my question; Would you use me to take photos of your children?

My Journal - Week 113 (23Oct11)

2011-10-23T23:59:00.001-04:00

I am Joining with "Grammarly"
to Touch Lives Around the Globe...

October (And November here In Canada) is Down Syndrome Awareness Month. In honour of these wonderful kids, Grammarly, the premier grammar checker on the web, has partnered with WideAwake.org to support the Yamini Foundation that assists children with Down syndrome in India. I am joining their efforts by sharing my story of hope.

Many of you know I have authored several books and stories. One personally written short story is about my own view on how our lives are touched and changed by Down syndrome. Originally I was inspired by Emily Pearl Kingsly's "Welcome To Holland" to write my own piece, but in all honestly my own experience in having a son with Down syndrome coupled with my very own feelings about Down syndrome truly allowed me to produce "Welcome to Our House - An Analogy". I published "Welcome to Our House - An Analogy" as a new copyrighted short story, placed it directly into two of my more recently published books and was also lucky enough to have it published as a two page spread in a popular family periodical called "Exceptional Families" magazine.

Please feel free to print this (use PDF below) or pass this on to others.

Reintroducing: "WELCOME TO OUR HOUSE - AN ANALOGY"

Having a baby is special. For some, it’s a life long 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 – 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 an awful place; it’s just a different place. It’s slower paced than the city, less noisy and flamboyant, but it’s beautiful nonetheless. 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

Downloadable version:

My Analogy serves as a home page for this very blog and is also available for PDF download in my heart-felt resource website called www.WelcomeToOurHouse-Ds .com

Grammarly grammar checker the best resource for English Grammar Rules will provide $25 to support the Yamini Foundation via www.wideawake.org ;

I hope this story serves to remind us how change can enrich our lives.

My Journal - Week 112 (19Oct11)

2011-10-19T04:56:00.001-04:00

A NEW UPLIFTING CARTOON CHARACTER...

who just happens to have Down syndrome!

It was only a matter of time before the world would realize - Down syndrome isn't different.... "More alike than different" is the Down syndrome motto and it is becoming more of a reality than in past years. Networks are working to introduce a new preschool cartoon character named "PUNKY". Punky is not your run of the mill cartoon. He has Down syndrome!! Equality in every way now includes the cartoon world!! The Ds world is very excited about Punky because slowly he gives children with Down syndrome a voice that says, we are just like you, even in cartoon-land. When this cartoon hits the airwaves, it will give this new generation of preschoolers a view about Ds that the 80's generation got with "Corky" (Actor Chris Burke) from Life Goes On.

It's not just the cartoon world that has introduced Down syndrome into the view of the general public's eye. Currently Sesame Street has several children with Down syndrome on it and at least one child with Ds is on nearly everyday. Prime-time shows are now casting actors who happen to have Down syndrome, and they make the regular cast - not just stand in's or guest spots. Take a look at Lauren Potter (Down syndrome Association of Los Angels' member with Down syndrome) - she plays Becky Johnson on T.V.'s hit show GLEE. And WHY NOT? 1 in 660 babies born are born with Down syndrome. A newer updated statistic (from 1:880) that makes a person more likely to have Down syndrome than a person to be born with red hair. Interesting... isn't it? I thought so too, considering that Red hair occurs on approximately 1–2% of the human population (according to http://en.wikipedia.org/wiki/Red_hair) and the world's population of Down syndrome is at 2% and rising.

Take a peek here and read about this new character: http://www.awn.com/news/cartoons/target-wins-global-rights-new-preschool-animation-punky

I am glad that parents and families who watch cartoons with their children, will get to see PUNKY. Perhaps ideas will change when more people are exposed to the realities that Down syndrome isn't an unknown, strange or scary "disability" as some think it is. Visions change when people are forced to realize that Down syndrome exists and they meet face to face with someone who has Ds. Otherwise Ds is an unknown. So perhaps this little cartoon child "Punky" will introduce Down syndrome in a way that is (of course) less threatening - being that he is a cartoon after all!

My Journal - Week 110 (03Oct11)

2011-10-03T23:09:00.000-04:00

My Son is GROWING....

It's been precisely six weeks since I last blogged. My Son is growing taller and my Daughter is getting heavier. Either, time is running away with my children or I haven't got any time to stop and smell the roses.... I think both are true at the moment. For me - things have been complicated and busy. But, progress with Hunter has been phenomenal. Swimming is about the same, small progressions each week. Hunter's Early Intervention happens about each month, or two with the status as usual (Hunter is meeting his goals). We had requested our family physician to refer Hunter to Grandview for Speech Therapy, just to ensure we covered all our bases ahead of time. Though Hunter's cognitive and receptive language skills are at the typical mark, his expressive language seems to have fallen a bit behind. But, what we have noticed is that Hunter is more than capable of "expressing" his desires and wants but often resorts to grunting to express his frustrations. Our problems lie with the fact that we know very well what Hunter means and wants, thus allowing him to continue to "grunt". I have been attending a workshop held by Grandview which teaches the principles of the Hannen Program - (a program designed to facilitate speech in children who seem to be delayed for one reason or another). I have learned quite a few tricks to encourage Hunter to verbally express himself but I find our only challenge is not Hunter! It's getting four adults to co-operate and properly facilitate these lessons with consistency! I am pleased to say (despite the inconsistencies) that Hunter has learned to do a whole "whack" of new things just from this program alone. All due to the adults in this household being reprogrammed....
For instance, Hunter now self feeds (a trick he knew how to do long before recently). Hunter no longer has any need for a baby bottle. He now drinks his milk and juice from his sippy cups and can drink from a regular cup with help. He pleasantly says "Hi!" to everyone in the home as well as first thing in the morning to ensure his Mommy and Daddy get up out of bed. Hunter now indicates when he is hungry by pointing to his belly or to his mouth (we are still working on words instead of signs though). Hunter has discovered the world of song. He sings in tune most nursery rhymes albeit the words are indistingishable. He rambles on a mile a minute, sentences that only Hayleigh at the moment understands. If ever you saw two little ones talking to one another, don't assume they don't understand one another. Hunter and Hayleigh have daily conversations! On the topic of brother and sisterhood, my two little children are getting along much more famously now.

Hunter is now over 32". Somehow (it seems almost overnight) my son has grown so much that we seem to have to move everything out of his reach. He now is able to open doors inside the house. Just today, Hunter nearly escaped the bathroom after discovering that he could open the door, all on his own. Imagine that.

Since I opened the Dragon Ink Tattoos and Piercings Studio, Hunter himself decided to "get ink". Take a look at a photo taken on our Grand Opening day... (the tattoo isn't real - even though it looks authentic).

Today even Miss Hayleigh has been deemed "ahead" for her age. Jenn had been reviewing Hayleigh due to our concerns about possible Fetal Abstinence Syndrome, which to date has proven to be non existent. Hayleigh had been drooling (what we believed to be the start of teething) only to discover that she indeed has a bottom tooth! Imagine, at only 3 1/2 months old... a tooth. Wow.

So, enjoy a few photos that had been taken over the last 6 weeks!

The Wolverine - aka Hunter needing a hair cut....

Miss Hayleigh engrossed with Mr. Froggy

Miss Hayleigh with Uncle Ollie

Hunter with his new "Tattoo"....

Hunter "getting" his new "fake" Tattoo!!! (It's our real artist but not a real session).

And there you have it, an update! Next time I'll put in a swimming video!

My Journal - Week 107 (14Sep11)

2011-09-14T16:15:00.000-04:00

DDSA SUMMER EVENT - WindReach Farms 28Aug11

Again, I know it's been a while, but being a Mommy, Police Officer, Business Owner, DDSA Executive Director and at the very least - just being me, is exhausting!

Back on the 28th of August the we (the Durham Down syndrome Association) held our Annual Summer Picnic at WindReach Farms. I got the idea to have it at the Farms through my mother who herself is an Executive member (Treasurer) with the Kiwanis Club of Riverdale. They have held a few of their meetings at the WindReach Farm. While my mothers group was there, she noted how great of a facility Windreach was (being that they cater specifically to people of all abilities) and suggested it to me for the DDSA.

I decided to suggest it to the entire executive and it was decided we would hold our picnic there. Here are a few wonderful moments of us, at Windreach.

What the heck are you?? Mommy says you are a chicken....

But, I thought chicken was something I ate? I don't think I'd eat you....

Vaun is here too! My best buddies are here!

It's a real "sheep"! Baa baa white sheep!!

I'm not too sure about this Daddy... But they are woolly soft!

See, now this is what I thought chicken was... I'm so confused!

Me and my Daddy... riding the hay wagon!

Mommy and I are riding the Hay Wagon now!

Lexi is giving me a hug and kiss again!

And I FINALLY get hugs and kisses from my buddy Haedyn! I love my friends!

Tonight we are having our Quarterly Meet & Greet with the DDSA. I have invited a Doctor from the University of Ontario Institue of Technology (UOIT). She (Dr. Lloyd) will be discussing and speaking about Children with Down syndrome and their physical muscle functionality. Hopefully we have a good turnout at the meeting....

My Journal - Week 104 (27Aug11)

2011-08-27T02:19:00.018-04:00

IT'S OFFICIAL... WE'RE OPEN!

A note about our new business investment.

It's been a long couple of weeks but it is official. I have officially become the proud owner of Dragon Ink Tattoos And Piercings Inc. After I decided to purchase a business and draft up the proposal to purchase for an existing Tattoo Studio, I made the additional decision to open my own corporation for the sale rather than assume the existing name. While it would have been a million times simpler to just take over the existing business, creating my own corporation name saves me the potential future issues that could have come along from the existing business name. Purchasing a "Turn Key" business is all well and good if there are no known issues or there is plenty of proof to the established business. In my case, even though it takes so much more to open a new corporation (and usually this is done by a lawyer or business designed to do this kind of work for a large fee) I did it on my own. All the filing, all the "Articles of Incorporation", the actual legal paperwork for the "Proposal" and "Purchase of a Business or its Assets" etc. It probably saved me a few thousand to do it on my own, but it takes night and day to do it right. I did ensure that I had a lawyer review my work and make the proper Addendum's for the sale.

As of Thursday past (the 25th of August), I took possession of the location and opened the doors of the Tattoo studio as, "Dragon Ink Tattoos and Piercings Inc."

Since Thursday, it has been overwhelmingly busy and profitable so far. This investment allows my family to be together as it allows me (the Owner) to control what happens there and I can manage it through John.

I maintain that my Studio will be more successful than most because the difference between my studio and many others, it is a family owned and run business, with family in mind. Because Tattoos are now more of a modern expression of art rather than a mark of crime affiliation, I ensure that anyone can come in to my Studio and feel welcome. My studio is bright, modern, fancy and beautiful. There is not a single hint of "old school" grunge or dungeon.

It is to the future I look with this venture. It is a place where I can have my children (hopefully) learn how to work in a retail environment to business administration and facility management. Hopefully it is a success years from now and Hunter or Hayleigh will want to continue making it a profitable venture.

Here are some photos of my investment:

Signage people working on the FRONT OVERHEAD sign that I designed personally

Professional signage company (and also personal friend) helping to get sign up on first day

Front signage being hoisted up to its new and proper home

My personal design is looking good - nearly there... for ever.

Final touches and a few screws - the sign will be our first impression for everyone to see

My lobby. Warm, inviting and classy for you to sit and view tattoo images

My front desk. This is where John (now the Studio Manager) will greet you.

The tattooing studio. Room for three prolific artists, the room is classy and upscale.

Chair #1, worked by Jeff LeBlanc - my current Master Artist.

Another view of the studio. At night time, the studio is now dimmed before we shut down.


This is our Front "Private" Tattoo/Piercing room. Set up perfectly for discrete work.

So much has been done in these last 2 weeks that I feel as if the days have been blurred from one into the other. Let me just say, for the record - setting up a business (whether as an investment or to have run by yourself and your family) is a huge undertaking. I have run several businesses in my 38 years of existence so it isn't a new tricky venture for me but it does take up much of my time. Within the next few weeks or so, it will have all been worth it while I sit back and allow my hard work to make me lots of money... I hope!

And for no other reason but to advertise, if anyone at all is interested in getting any work done, from their baby's name written in script or maybe the hand or foot prints from birth to whatever they have wondered or wished to do - please don't hesitate to ask or be a stranger. Call me and ask me any questions you have about tattoo work. One thing I know my studio will eventually be known for is that it will be the "go to place" to get your first tattoo or one of many. Visit my website (currently a work in progress):

www.dragoninktattoos.ca

Visit us in Ajax at 282 Monarch Ave.

Unit 22B, Ajax Ontario L1S 2G6

Or call the studio at: 905-231-2360

Tomorrow (Sunday 28 Aug - 12pm - 4pm) is the DDSA's (Durham Down syndrome Association) Family Picnic at WindReach Farms!! Keep posted for the photos of a day we arranged to be filled with families and fun. BBQ, Animals, hayrides, games, and more....

Visit www.ddsa.ca for more information! If you can, join us! DDSA members are free to attend. Non members can participate for $10/child & $4/adult.

My Journal - Week 103 (15Aug11)

2011-08-15T23:10:00.005-04:00

HAPPY 2ND BIRTHDAY HUNTER!!

After two years, my little baby is now a full fledged official "toddler"! Today is Hunter's 2nd birthday. Yesterday (Sunday), we had his birthday party and party it was! Unfortunately, things never seem to go as planned, schedules didn't get followed and but we had a fun great day nonetheless. The activities I planned got left behind, and so some other day - play date - we will finish what I had set out to do on his special day.
I do blame myself for not being as organized as I usually am for such a special event. While I had literally bought and planned the parties activities over a month ago, I recently undertook one of the biggest ventures of my life this past week. I invested and bought a business. After today, one of the most critical conditions was met and it seems that the "offer to purchase a business" will be nearly complete and I will "Own" the business I purchased. The business I bought is an upscale four year existing tattoo studio. While many may lift an eyebrow or be quite surprised, this enterprise is an extremely profitable one so long as you know the industry. Being a police officer, I have the ability to keep this business a clean, family oriented store/studio, with rules and regulations adhered to. Running a tattoo business isn't just about putting "ink" under someone's skin. It's about proving a key service, ear piercing, body art and more.
Officially (at this moment) I do not tattoo, and I am learning that side of the business but I do have a entrepreneurial mind and have run several of my own businesses. So, I will be able to put those same skills into ensuring that this store exceeds and succeeds.

Anyway, as time moves along and the 1st of September approaches (the actual possession date) I am sure I will have much more to comment on. For now, I have several photos and video to post of Hunter's birthday.

It's my birthday party!

This is one of my best buddies - Vaun.

This is one of my other buddies - Taylor Rose

I'm entertaining my friends!

Here are Vaun & Taylor Rose playing together!

My friends are all enjoying my play room!

My sister Hayleigh is enjoying a bottle with Uncle Oliver!

We are all in my new ball castle!! Wow... incredible fun!

I didn't even know Mommy bought this fun thing for me!

Vaun is sliding down with his Daddy's help!

Taylor Rose is brave! She climbs up by herself and slides down alone too!

Her little sister Brooke is just learning to slide!

Here I go! I am such a big boy, this is my first time by myself!!

Here's my cake! It's actually a cupcake cake!!!

I have a plastic fork to "cut" my cake!!

See, here I go... hands and fork in to the cake!! Ewwww!


And my final photo before opening gifts, me eating my cake with my family!

Mommy and I read all my cards and I open my gifts!!

A scribble pad and paper from Aunty Melissa

Books....

Crayola Beginnings...

Washable (good thing) Crayola Markers... (for my Crayola Beginnings)

Peter Rabbit... (for me - Hunter Bunny)

Nursery Rhyme Picture Book...

And Peter Rabbit Book...

MORE Crayola Markers (different colours) and notice how I sign MORE!!

Animal Magnets from Aunty Jane... Humm - I love animals...

Sea Creatures Colouring Book...

Disney Cars Back Pack - for when I am ready to go to school, or carry my toys around!

Cool Rocker Clothing from Haedyn & Isabella!

Chuck Trucks Tonka Set!!

Something called Play-doh... I don't know what it is yet....

And something Mommy called Mr. Potato Head!? She said it's an old toy?!

Melissa & Doug Sound Puzzle!

Bowling Pins?! Again, someone said that Mommy knows all about Bowling!!

Nerf Dart Tag - Mommy said Daddy will play with it more! Something about Cops & Robbers!

Thank you all so much for helping us to celebrate Hunter's very special day. Being two is going to open a whole other world of excitement and challenge. We can't wait to embrace it, every step of the way.

My Journal - Week 101 (02Aug11)

2011-08-02T22:47:00.000-04:00

DOWN SYNDROME....

I TOLD YOU I AM AN ADVOCATE!!

Many people may not realize the commonality of Tattoos these days. I am not your usual plain old everyday person. I like art permanently inked onto my body. I may have many tattoos on my body but one thing I ensure is that each one of my tattoos has significant meaning behind it. I have always planned and carefully thought out each and every single one of my pieces. I know that tattoos are much more accepted these days and that viewing a person with many tattoos has less of a shock factor than it once did. I personally do not tattoo my body to shock people, as many out there do. My tattooing is significant, which for every person it should be. There are however, people out there who do have plenty of images on their person that seem to make no sense or that the general public may question. What I have realized about myself is, I would only get a tattoo that I believe will stand the test of time. In other words, will I still enjoy this image when I am a grandmother? As it stands for now, I do believe that I will. One image that I know I will never question is one that I had done today.

Since my life has become "Everything Down syndrome" I thought, if all my tattoos signify a special significance in my life, why not an image I developed which is all about Ds?

Here is my latest tattoo:

Starting from the right side...

The middle (it's too round to take one shot)...

The left side...

A final mid shot...

It's my copyrighted Ds Advocate Ribbon Magnet!! And why not, it's my own creation!! (PLUG - those who would like to purchase an advocate ribbon magnet for their vehicle, please visit my publications page or my other website www.welcometoourhouse-ds.com).

I can understand that there are those out there who will not like or appreciate the tattoo art. Some will feel that it's too much, others may reach back to the old days. For those who do not like tattoo work, I can't be sorry - it's a part of who I am, they are for me. For those more current or modern folks who do like the images, I thank you! Either way, hopefully you will love me for me, I believe Daddy, Hunter and Hayleigh do!

My Journal - Week 101 (31Jul11)

2011-07-31T23:39:00.000-04:00

OUR GET AWAY WEEKEND AT CAYAUGA - Year #2

I am beginning to think we will be making Cayuga (Toronto Motor Sports) a yearly event since it is one of Daddy's passions which suddenly my children have inherited! I love watching cars go fast, but believe you me - I have had a much different opinion of car racing over the last 14 years of policing. I guess I am just used to being in another vehicle going just as fast, only I am chasing them down instead!

This time around, Hunter wasn't as cheerful to sit tight and watch the event. He would have rather (had he been allowed) to roam freely at the bottom of the stands, run up and down and stop every so often to cheer wildly at a pair of cars racing down the 1/4 mile track. Hayleigh on the other hand, took over the quiet child routine, sleeping through every single race!

We had a great time - even though this year the tickets were not free (as last year John won them). This year was TV shows "Pinks All Out" iconic host, Rich Christensen's last year doing "Arm Drop" racing and so for Daddy (and a few Hundred other people present there), this was a milestone event.

It took us a crazy 4 hours to get to Cayuga on a Saturday afternoon and a silly 55 minutes to get home Sunday. There was a fatality on the Burlington Bridge however, hindering our timely arrival to the race event. Either way, we arrived and had a fantastic time watching the races. We then made our way into Hamilton to the Sharaton Hotel and room (which was also wonderfully large), relaxed with dinner and fell soundly asleep... EXCEPT for miss Hayleigh (who's internal clock is all wrong) who kept me up all night (not crying) to be fed and entertained. Oh well.

Enjoy the photos - we certainly had a super time.

Daddy... I think I remember this place! It looks familiar....

Wait, Wait a minute... I know! It's the car racing place... Right??!

Yay! I was right! Car racing!! We got here during intermission after Qualifying!

Here we are at intermission! A family photo at Cayuga!

Just behind the grandstand, a field for me to play in during intermission!

Mommy and I are in the sun, covered in sunblock & waiting for intermission to end!

Ohhhh a doggy! What a nice Sheppard! Hey Doggy - do you like the races too?!

A beautifully restored vehicle just raced and lost in Qualifying round #3.

Believe it or not, here is your 2011 Arm Drop winner... a GSXR1300 (Suzuki, like my old bike)

My little sister Hayleigh is sound asleep... even with all the noise!

What a beautiful car. Just like Eleanor, this is "HELEANOR"!! ALL done up.

It was so warm out, Daddy got me an ice-cream cone! Yummy!

Another family photo at Cayuga's 2011 Arm Drop Racing Live.

I loved watching the races today!

This is our Hotel Room, mommy even got a crib for me. Humm, I'm not too sure about it...

A great end to a great day! Happy Anniversary Mommy & Daddy!!

Yes, our weekend get away was for our wedding anniversary. Though it was actually on the Monday past (25th July), it was a great reason to get the family away for the weekend and enjoy a bit of racing too!

My Journal - Week 100 (29Jul11)

2011-07-29T03:20:00.000-04:00

SWIMMING VIDEO - Lesson 16!

My apologies everyone, it appears in my haste yesterday (and literal sleep fog) I forgot to actually include Hunter's swimming lesson videos! I know not everyone wants to see them every week, but there are many family members who have asked to see his progress. Since he will be doing a new progression (later today) we are told, I figured it would be appropriate to have his last lesson here to compare.

Please enjoy the videos and by all means mute the volume. I didn't have the time (as if I ever do) to do a serious editing session and voice over of the clips. I do have the means to do so as well as the machine (iMac) but it's just one more thing I don't really have the time for. Add smirk, as I sit here with miss Hayleigh in my lap and glance at Hunter on the baby monitor asleep in his crib. At least most people in this house are asleep!!! It seems that every time I video events, people love to chatter away with me (and in all honestly I love to chatter so it isn't like I advise people not to talk to me) while I film. Perhaps as moms of younger children, we have lots to say to those who can speak and converse at the same level of intellect and IQ rather than baby chatter all day long - not that we mind toddler chatter of course... but we all need distractions at some point.

I have been spending a lot of time editing my Ds resource website, including a fabulous Icon on your browser tab (if you haven't noticed - take a glance at the tabs when you open my other website). This tab will show a bright orange B (for Blogger) and my site has my blue Ds advocate ribbon (which is my magnet creation) as the Icon. I have added more sites and resources (as promised) since I have made my website a continuous work in progress rather then leave it unpublished. Thank you all for checking it over and over when you can.

And without further ado, the 4 short swimming lesson clips:

Part 1 of 4:

Part 2 of 4:

Part 3 of 4:

Part 4 of 4:

Check back later today or tomorrow for the new video with new tummy swimming!

My Journal - Week 100 (28Jul11)

2011-07-28T03:10:00.007-04:00

UPDATES, UPDATES!!

One thing I noticed when Hunter was born was how quickly time flew by. It appears when you have a second child, time flies by two times as fast. I can hardly believe that Hayleigh is 6 weeks old as of this Wednesday.

Website updates: My website www.welcometoourhouse-ds.com is up and running and has been doing well. It appears many people are visiting and using my resources. I have also added an Icon to the tabs to show how unique my site is.

Durham Down syndrome Association updates: 28th August is our Family Picnic date! Join us at WindReach Farms 12-4pm for loads of fun, activities and BBQ. Hayrides, Petting zoo, Farm Animals, Stables, and Sensory room - plus family acitivities! How could you not want to come! All DDSA members can enjoy the event for free (entire household) and guest adults pay $4 and children outside the members household are $10 each. Feel free to bring other family or friends. RSVP to me before 15th August if attending. Also, the next DDSA General Meeting "Meet & Greet" is 14th September 2011 at 7pm (Iroquois Sports Complex Garden Cafe, Whitby)

Hayleigh updates:

She now weighs 10 pounds! What a cute chunky monkey! She no longer needs supplementing (that's for sure...). She still suffers with gas - I could call it colic... but what's the point. Let's just call it what it is. I'm used to it, having gone through it with Hunter, it makes me believe my breast milk has higher than normal amounts of Lactose (which foremilk is naturally full of and both Hunter & Hayleigh would fall asleep before getting the rich (less Lactose filled) Hindmilk). Gripe water seems to be our best friend these days along with Oval. Not to mention both my children are lactose intolerant as is our whole family including Daddy....
A red mark I noticed on Hayleigh's upper back (which I thought was a scratch/mark she aquired in the NICU somehow) turns out to be a birthmark (which I figured after 6 weeks must be) called a "stork bite" or more medically known as a Infantile Hemangioma. These marks usually are superficial and do not require any treatment and are not health issues. Luckily, Hayleigh's mark is so small and looks more like a scratch AND is is a location that is not obvious (on her back) that it wont cause her any grief. Many Hemangiomas can appear on the face and extremities and as a result can cause life long emotional scars. The good news is, (not that she really will be affected by its location though) is it can disappear by the time she is 18 months old BUT sadly the flip side to that is, it can grow to a larger size - which would happen from the 3-9 month time frame. I will have to keep a diligent watch on it.

Hayleigh's stork bite (Infantile Hemangioma) oddly enough looks like a swan!

Hayleigh smiles everyday! While Hayleigh (like Hunter, smiled and laughed at the age of only 2 days old) she continues to smile on a more regular basis now. When she gazes at me and I smile at her, she will smile in return and coo. She loves to do this, when she is not gassy and fussy upset.

Big toothless grin for my Mommy!

I smile when Mommy or Daddy smile at me!

Hunter updates:

Swimming is going really well. It would seem that we are back on track. The return to a more normal state (given that there is a new baby in the house) is showing at swimming. Bonnie (Hunter's swim instructor) noticed this in his last lesson and has advised us that she will be starting him on his stomach next lesson! How exciting! I wonder how he will take that progression. I had decided that a private lesson every other week with Bonnie (where Hunter doesn't have to be removed from the pool to wait until his turn and have 15 minutes straight with her) would be beneficial and it would seem that I was right. He has had one lesson so far (private) and it was from that he seemed to make the most progress and was the happiest. I am posting his last group lesson where Bonnie decided that he will move to his next progression.
Speech is coming along but is confusing for all of us at the best of times. Hunter has his "clear" words which there is no doubt about what he's saying but then he also has his baby babble which he uses in long sentences with hand gestures and all! On top of that there's his sign language, which he can be very lazy about using. With the onset of running around, I know his language has somewhat taken a back seat - as it's far more interesting to run and explore the world around him rather than focusing on speaking. I'm not worried yet about any delays per say but after his last EI visit with Jenn, there are definitely many things we can do to help him (not to forget) what he can do.

Things to encourage speech (and lessen his frustration):
1. Set up a photo album with photos of his favourite or recognizable items (such as his shoes, ball, book, cup, juice, milk, food, favourite toy etc.) Set up a second duplicate photo album with the same photos but labelled. Ask Hunter to point to a specific photo. Ask him to tell me what it is. Post the photos on the fridge. Ask him to point and tell me which food item he wants, or for example - Milk versus Juice.
2. Give Hunter new signs (sign language).
3. Be patient and encourage him to speak or point out what he wants, discourage the negative reactive behaviours (like grunting or slamming hands down on tables etc.).

These are just some of the ideas Jenn gave us to encourage Hunter's speech along. I keep in mind his private speech pathologist Jill, advised that Hunter is fine and needed no help at the time he had his assessment. We do however have a group assessment coming up in September through "Grandview" which is covered by the Government, thank goodness as private speech pathology is quite expensive.
I am curious what they will tell us at Grandview and also curious what they will add or suggest to help if he needs or requires any at his next assessment.

Jenn and I are drawing on my report!

I'm just having too much fun to pay any attention!

Daddy and I are walking with Hayleigh at the park!

More to come - keep watching!

My Journal - Week 98 (16Jul11)

2011-07-17T00:04:00.003-04:00

WELCOME TO OUR HOUSE - DS.COM

It's a reality.... FINALLY! I have finally published my Down syndrome resource website. It took me a year to put it together (and for no other reason other then lack of time) and finally press the "GO" button! Now, the site is not totally completed, and I have so much to do, but I realized it was silly of me NOT to allow the public the opportunity to use, read and gain knowledge from it while I still work on it. It was pretty unrealistic of me to think I shouldn't unveil it with more work to be done. Like my book, I still have much to do with it - it's definitely still a work in progress. I still must add the stories and photo's of the many people who contributed work that I requested and then gathered, which is also to be published in my 4th book.


http://www.welcometoourhouse-ds.com

I hope everyone who reads my blog will take the time to visit my resource website.

www.welcometoourhouse-ds.com & www.welcometoourhouse-ds.ca

The site houses Down syndrome resource information, medical information, personal views, websites, blogs, personal and other family stories and of course my books and magnet.

I hope as members of our community get the chance to visit it, they will advise me of their thoughts, ideas and suggestions. I certainly would love to reference the many blogs that pertain to Down syndrome - so if you would be interested in having your blog listed on my website, please send me a contact message either through this site or the new website!

Keep watching (here or there) for updates to the site, daily.

My Journal - Week 98 (15Jul11)

2011-07-15T23:59:00.007-04:00

THE 1st and 2nd FIFTEENTH... Girl vs. Boy.

Today, miss Hayleigh is 1 month old - 4 weeks exactly as of today the 15th! Hunter, is 23 months old today also the 15th. I have no idea where the time goes when you have children. I don't recall time ever going so quickly in my life, but indeed here we are.

I had been promising and promising to post Hunter's newest swimming videos, and finally I uploaded them. The one you will see here is from last week - July 8th. It was the first video taken since Hayleigh's birth AND boy can you tell....

Noticeably as time flies by, we see the small progressions in Hunter's swimming lessons. Unfortunately in this particular week shown you can see Hunter is slightly agitated and grumpy. This is due to two very important reasons. One, he is lacking his usual nap before swimming and two, (and much more importantly) he is struggling with a new change at home - having his new baby sister!! BUT either way, he still loves his swim time with Bonnie and it's still a fun break for Mr. Hunter! The newer progression we noticed this week is Bonnie being able to pull Hunter by his head without supporting any other part of him, while on his back. The contributing distraction for Hunter that we noticed is that his usual pool deck supervisor (Cindy - the older Asian woman) is gone for the summer and Hunter was so comfortable with her and he's obviously missing her. It's a change that Hunter doesn't like or accept. Just today while at his lesson (which I do not have uploaded yet), he was terribly upset with his new young deck supervisor who he would look up at and get so unhappy that he actually cried! This "crying" is a first for Hunter. He has never cried during or at a swim lesson, so he's obviously distressed with all the changes.

PART 1 OF 3

PART 2 OF 3

PART 3 OF 3

Despite the sadness and changes, one thing we know for sure is that he still loves his swimming. When you ask him about going to swimming, he laughs, smiles and rambles on at a mile a minute! Also, he can't wait to get going and into the truck to go. So, knowing that is still comforting.

On a "Sandi note": I have been thinking of some personal changes in my life which I would like to explore and possibly make. Due to my policing injuries, work has been out of the question for a few years now. Though I have been an officer for over 14 years and any change at this point sort of seems impossible for me to even contemplate, one idea has been gnawing at me for a while. My family doctor and also family members have often asked me, why don't you study (go back to school) and become a doctor? Now, if I wasn't nearly 40 - I would consider doing it. I love medical science, helping others and teaching. But turning 38 in a few months makes me realize, going back to school for approximately 10 years wouldn't make a whole lot of sense at this time in my life, at least for me. Not to mention the tuition costs.... But, with Hunter being my child and my strong advocacy stance for Ds, as well as my recent appointment to the Durham Down syndrome Association, I have been thinking about areas within the "special needs" more and more and as time goes on. I realized that this might be the area I want to move forward in as I found it very satisfying to have created a Play to Learn group through the YMCA for families and children with any special need.

Also, when we took Hunter to the renowned Ds speech pathologist, Jill Clements-Baartman of the TLC (Talking Language and Communication Inc.) for his first speech assessment, I realized that there was something about being a S-LP (Speech Language Pathologist) that appealed to me. Now, it's important to note, Hunter's "speech path" Jill (the same renowned S-LP that the DDSA uses) advised us that Hunter's speech was fine and at the time, was not in need of having a Speech Pathologist work with him as many many children with Ds do often require. In working in the DDSA (Durham Down syndrome Association) as an Executive Board Director, we had put together a Summer Literacy Program (which we chose to run with Jill) - that directly focused and would target speech and language skills of children/teens or adults with Ds. So, while it would certainly be helpful for Hunter (should he ever need a S-LP) I just happen to realize how much of a difference it could make for those who need Speech/Language Therapy in their lives, should I pursue that "career" avenue - not to mention Hunter.

I always like to be able to do for Hunter the same things that professionals do (to help him along in the best way possible) and becoming a Speech Pathologist would definitely do that. Not only for Hunter, but I have ALWAYS enjoyed teaching, and this definitely falls into that category - specifically to and for Ds. Not to mention that a Speech Pathologist can make an awful lot of money since it is so specialized....! It would mean though, Sandi must return to University. I still have 26 university credits which are not applied to any major or masters degree so it would definitely work out if I chose to go through to become a licenced S-LP.

Would you believe that the other thing I would love to do some point in my life is learn how to Tattoo people??!! Well, that's another story all together.... That's for my creative/artistic side.

Next (and more importantly for the moment) on the agenda, is the planning of Hunter's 2nd birthday party! Details to come - it's going to be wild & fun. It's a personal "Mommy" planned party with awesome activities and lots of cool things to do. More on this, next post.

My Journal - Week 98 (12Jul11)

2011-07-12T03:44:00.001-04:00

After the storm, Comes the calm.... Right?!

A week after the massive meltdown, Hunter seems to have turned over his new leaf. I really believe that Hunter needed to get his "tantrum" out. It gave him the cleansing that he needed. It also gave him some Mommy & Daddy understanding to how affected he had been by this new addition. I am happy to report that life has been much better and while we still have "hicups" here and there, (a few minor growls but nothing more than that) Hunter has become quite the loving big brother that we had hoped he would want to be.

While I am still quite observant of Hunter's actions with his sister, for example - he has no idea of his own strengths, he's happy to be around his sister. He's concerned when she cries - displaying a face of questioning such as, "Mommy, are you going to fix her?" or calling "Mommy??" when she starts to cry. But, on observation (which Hunter does very well) he has lovingly tried to help me on many occasions to burp his sister, by patting her back (sometimes a bit hard...) but rubbing and patting nonetheless. A video I will have to shoot for you all to see. There has been no more swatting of his sister, and no more attempts to chomp on her, much less myself or Daddy. Perhaps this is due to the fact (also) that he has three teeth that have come in all at the same time, and only one molar left of all his baby teeth. Hunter now lovingly strokes his sister's baby soft hair, and gazes into her eyes (when open...) with a chuckle of a response just for her.

This new leaf and acceptance definitely has lessened my stress, since worrying about Hunter's feelings had made me very weary and worried. It's not that I don't expect blips to happen along the way, or new pangs of jealousy as time goes on - but I am happy that there is an effort and a calm these days.

One place that it was noticed that Hunter was having difficulties or was quote unquote, "more grouchy" was his last swimming lesson. His instructor Bonnie did happen to comment that she noticed that Hunter was unusually grouchy during his lesson... which was not only affected by his lack of a nap that day, but my forgetfulness to tell her that he now has a new sister! After the explanation, she fully understood. We anticipate a better outcome this Friday. And as I have promised, at some point I will get the lessons on.

So, it has been said that miss Hayleigh is a tiny representation or little version of myself. Affectionately now known as, Sandi 2.0 or Mini-me! Where Hunter was born with blond hair and blue eyes, Hayleigh seemily was born with dark brown hair and dark eyes with some odd concoction of blue/grey/brown and green in them?!! As the weeks go by, her eye colour is definitely starting to lighten up. One interesting thing I recently noticed is that when I take photos of her, (and her eyes are open) I get red-eye for her. I had leared quite a while back that people who produce red-eye are those who have lighter pigmented irises. Those who have dark brown eyes do not experience this phenomena. It has to do with they layer that covers the lens and also the colour of the iris. So, I guess in conjunction with time (as it goes on) and what I am observing in her eyes, she will liekly have lighter coloured eyes. Maybe not so 2.0 after all?!! And with the fact that she was born with her eyebrows a blondish/reddish colour... while her hair on her head is dark - the question will remain. So, I guess it will be a while before we learn exactly what her hair and eye colour will be.

I thought it would be prudent for me to post some newer photos (thus also proving wrong to those who said I would probably not take as many photos of my second born...) of the children. Funny, I am not getting much sleep (since Hayleigh is a night owl...) but I manage to get rest here and there. Thankfully I have my family to help. There are many days where they can't though, and it's often trying to have young ones close in age but I know it's worth it.

Canada Day Fireworks - I am showing everyone how I shave, just like Daddy!

A wonderful blanket-bear gift for Hayleigh from friend Haedyn!

I am eating Mommy's left over pepperoni's that she doesn't like!

I'm staring at my Mommy... and she's staring at me!

Daddy's got us both... and we are sound asleep. Daddy's not too far off either!

Hunter: I am now loving my sister. She's not that bad!!

Hayleigh: I'm trying to give Mommy a smile but Mommy cut off some of my face!

Hayleigh: Ahh, this is the life! Lying here in Mommy's lap!

Hunter: The front porch is so much fun in summer!! Wanna play?!

Hunter: Mommy says I am being such a good boy!! It's because I am happy!

A Father/Daughter moment. A kiss for both Daddy & Daughter.

So, next post I should probably upload some videos!! Hang in there... I will get there. Some day....

My Journal - Week 97 (05Jul11)

2011-07-05T23:59:00.039-04:00

TANTRUM RECOVERY AFTER MASTER MELTDOWN....

Today we had quite the day.... And in all honestly with Hayleigh's arrival, we've had quite the last two weeks. I think (rather I knew) at some point Hunter was going to have a complete MASTER-MELTDOWN. And today was the day. I was very close to videoing the Meltdown itself, but I decided it would probably not be the best thing to do while he was "engaged" so to speak. So, after an hour of screaming, (and when I say screaming, that doesn't do it justice...) crying, growling etc., Hunter finally retreated into a more "Hunterish" type of personality. By midnight, he was back to the Hunter we are more accustomed to. This is the boy we hadn't seen in over three weeks. I just hope he's back to himself on a more usual and regular basis... as opposed to the meltdown monster that we have been seeing as of late!!

I suppose it's one of those things where if I had the time to worry about Hunter & Hayleigh's behaviours (having taken them both to YMCA Play to Learn group today) I wouldn't have likely ventured out of the house. They both were actually wonderful and calm while out today, no screaming while out at the group, no hitting or biting (which as of late had become Hunter's somewhat newer adaptive behaviours to having a permanent visitor called a sister). All these "good" behaviours lasted until we got home (and with no nap, new things and a SISTER) it was a recipe in the making for a huge disaster. It was just a mater of time before the bomb blew. Only, I had no idea that the bomb would be that big - and if anyone want's clarification of exactly how big - or what I mean, just ask one of the three other adults in this household who had the privilege of hearing, seeing (or trying to soothe) Hunter. After our ride home from playgroup at 5:00 pm - Hunter had fallen asleep but awoke once we arrived home (five minutes away). I managed to get him back to sleep after about 2 hours of up and down, for a total of one whole hour, when he suddenly awoke, from what I can only guess was a bad dream. If anyone has ever been woken up after only an hour of sleep when they needed at least eight, you can imagine the mood.... Just add everything else to that and BAM - you have an INSTANT CORE MELTDOWN. I realized it was going to take some serious Mommy love and our own space (sans Hayleigh) for me to get Hunter to come back down to Earth. He cried, screamed and literally tantrum-ed so hard that he could hardly breath, much less scream or cry. Short of him throwing himself down on the floor (for the classic hands and feet banging while having said meltdown) he whipped himself back and forth, flinging his head wildly around, requiring me to just hold him tight, remove him from the area which seemed to provoke more (our play room) and take him away to a more quite location. After an hour, he finally just melted (to finish the meltdown). I then literally had to force his milk into his mouth (sounds horrible) because he couldn't stop for even a moment to realize I had his milk for him. Once he got a taste of it, he calmed down (just enough) to drink it. We sat holding onto one another for what seemed like an eternity until he was able to tolerate being awake! At that point it was 9:00 pm. The reason I have added a video and blog today was because this newer refreshed attitude I was seeing (after the meltdown) was the long lost Hunter I have been missing since we brought little miss Hayleigh home from the hospital. I just hope that it's a sign that Hunter is starting to cope. Trust me, whether Hunter is able to verbalize or not, he makes his feeling known. It's up to us as parents to help him sort through these feelings, frustrations and insecurities. At least (and I say that with a raised eyebrow) he's calm now and back to a chittery chattery self. It seems my newest challenge/goal work with Hunter will not be so much about physical milestones, as they will be about emotional ones, and rightly so at this time.

Oh, don't mind the sleepy Daddy, he's been working his usual crazy hours and we are all physically tired and worn out with having a newborn home and sleeping reversed hours!

My Journal - Week 96 (27Jun11)

2011-06-27T19:05:00.002-04:00

What the next day brings....

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

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

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

Here are the photos:

This is my new little sister, Hayleigh!

Ahhhh. My mommy loves us both so much!

Humm, I wonder if she will bite my finger?

I wonder how long she's staying??

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

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

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

My Journal - Week 95 (25Jun11)

2011-06-25T23:29:00.006-04:00

One Plus One Equals CHAOS!

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

Compare here:

Baby Hunter - One Day Old 15 Aug 2009

Baby Hayleigh - One Day Old 15 Jun 2011

Or these two:

Daddy Certified 18Aug2009

Daddy Certified 17Jun2011

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

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

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

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

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

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

My last home photo before the big day... 1Jun2011

Aug2009 - Comparably half the here with Hunter's pregnancy!

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

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

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

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

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

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

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

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

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

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

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

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

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

My Journal - Week 93 (11Jun11)

2011-06-11T23:59:00.005-04:00

A DISAPPEARING ACT??!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Journal - Week 89 (14May11)

2011-05-14T12:01:00.000-04:00

It's my POTTY and I will cry if I want too!!?? NOT!

If anyone knows anything about having renovations done, they will tell you it's one of the most time consuming things that will take over a huge part of their lives. I decided that before our next bundle of joy makes her entrance, I wanted to get my master bathroom shower stall renovated (despite our home only being 5 years old). Part of the reason for wanting this done was Hunter's sudden inclination to have showers and no more baths! Our existing shower stall is just not large enough for one single adult let alone an adult and a child! But without getting into the glory of destroying and uprooting your whole entire home for something perhaps so small in comparison to an entire home renovation, needless to say it has been a long couple of weeks. One week of planning and another so far of actual reno's.

So, without further ado, there's quite a bit of information that I could have been posting that I have somewhat neglected to post due to all that has been going on. Firstly, Happy Mother's Day to all the Mom's out there! I wanted to share with you how I spent my Mother's Day. My family doctor had asked me quite some time ago if I would be interested in reading my book, "I Have Down syndrome, What Does That Mean?" to the children of his churches congregation. I readily accepted because it's something I am so passionate about. As the time neared to do this reading, he asked me if I would enjoy doing a Down syndrome presentation to the "bigger kids" (adults) of the same congregation. I was flattered and happy to do so. The date of the presentation would fall on Mother's Day and I couldn't have thought of a more apt day to do it. The presentation would revolve around my journey as a mother to be, learning about my first born coming into this world with Down syndrome. I embrace doing Ds presentations. For me, speaking in front of large groups is something that I thrive on doing. I love to speak and my passion in life has become all about advocacy, so it stands to reason why I would enjoy doing this kind of thing. I have already been privileged enough to do previous presentations so it was not something I worried about at all. The morning was perfect, the reading to the children was sweet and meaningful. But most of all, the adult presentation I did in conjunction seemed to captivate the entire audience. I think, having my star (Hunter) as my most precious part of presentation, always makes the difference. People don't have to only acknowledge what I am saying, and or have to just believe in what say but they have a real live opportunity to see and learn directly from him - because he was there, showing off as usual!

Time is quickly going by and as my pregnancy nears an end (four more weeks), as a mom I worry about how much of an effect having baby number two will be on Hunter. All parents who have a second baby go through this very specific worry, I am sure. Baby number one, who has been the centre of attention, who has been the only child during his whole existence to this point is about to be introduced to a new little family member. It's not the same worry when you have a third child, and while there are unique challenges every addition, this one I believe is the most mentally concerning for your first child. As a result there has been a lot of strategical planning that I know in my heart, no amount can prepare us for. Part of this planning is why I thought and decided to introduce Hunter to his Potty! I don't expect him to be potty trained in a short time, and especially with baby coming, I know that many things will likely take a back seat, but I figured making a first introduction can't hurt. Last night before Hunter's shower, I busted out his brand new potty and decided to see what would happen when we put him on it and asked him to do his Pee-Pee. Would you believe, within 30 seconds of sitting him on it, and telling him to do his Pee-Pee, he did! I can't say how amazed I was. No amount of descriptive words can tell you how elated I was that my little man did his business on command!! I know that Hunter takes his cues from how pleased I am when he does something new and accurate. I only wish I had thought (once again) to record the moment, but I guess there has to be some shreds of dignity left for my son when he's an adult! Now, again as I mentioned, I don't expect my boy to "hop to it" and be fully trained in a short time (and perhaps I should have some expectations) but the reality is, it's a beginning and the expectations I have are that when baby comes, Hunter may backtrack or regress a bit/a lot in spite of a new addition. So, I think I am prepared for which ever reality occurs, or have told myself to be.

And while this post has become somewhat long in all the catch up, I decided to post Hunter's last two swimming lessons in a separate next post. So, check back in a bit for the updated videos of Hunter's on going swimming lessons. Which, if I may say so - have been absolutely wonderful. I also decided that we will be continuing his lessons and I have renewed another 11 weeks despite the more expensive cost. His progress is truly evident and speaks huge volumes of why we need to continue his lessons with B&C Aquatics.

My Journal - Week 87 (25Apr11)

2011-04-25T15:21:00.022-04:00

HAPPY EASTER EVERYONE!

Did the Easter Bunny visit you??

We had a fantastic weekend, and I do believe Hunter now knows the meaning of Easter... in the kiddy way of course! We decided to get Hunter a Bunny after all - yes a real live BUNNY rabbit. This is Hunter's first pet of his own, even though Mommy & Daddy have to care for her while Hunter is little. Here are a few photos of Hunter's Bunny... who to this day still has no name other than Bun-Bun.... She's only 12 weeks old and is a Holland Lop rabbit. It seems that she will get to be a whopping 10 pounds when full grown (in about 3 more months) and she's a grey/brown colour. Great kind of bunny that is perfect for younger children.

Introducing the newest member of our pet family!

Such a curious little bunny!

But ever so loving and cute!

Daddy getting down to my level to play!

Meeting the kitty cats... and nope I'm not afraid!

A little bit of hide and seek with Twiggy?!

And loving to rest in Mommy's lap of course!

Also, we had a wonderful Easter (turkey) dinner at my cousins home, and it was scrumptious! Hunter has definitely come out of his shell, back to being the cutie boy that he is. Walking around causing mischief everywhere and at every turn he made. Hunter's latest mischief is opening drawers, cupboards and doors of all kinds. We have had to purchase latches and other additional safety devices in order to save precious little fingers!

Sunday was a restful day but since it was so beautiful out, we decided to take Hunter for a walk, (well - Hunter had a first class ride...) to get fresh air. Mommy wasn't able to go very fast or far but Hunter didn't seem to mind one little bit. When Mommy's back started to give out, we retreated back to the house where we decided to put Hunter's last year birthday gift to some use, and swing swing away!

This is my new ride! Daddy loves to push me around in it!

I know it's a bit of work for Daddy but I really enjoy the ride!


Can we go now Daddy? I don't want to sit still any more!

I still love my swing!! SO much fun!

I wish I could go higher and higher! Just wait!

I love that my Daddy wants to play with me!

And Mommy helps too!

I just love my Mommy so much!

And it seems Mommy loves me that much too!

One last swing as the sun goes down!

And I get to slide down too, before going inside!

And last but not least, here are the next usual three videos of Hunter's swimming lesson (which was last Thursday) - lesson number four!

Hunter's 4th Swimming Lesson - Part 1

Just another day in the pool! While it is obvious that Hunter is a lot more relaxed with the whole swimming environment as well as his instructor Bonnie and Pool Deck Supervisors, what isn't as obvious is his demeanour. If you watch closely, you will notice it doesn't take more than a few seconds for Hunter to trust Bonnie and also lay back in the water to "float". You can clearly see it looks like he's sunbathing in the water with his arms back above his head!

Part 2

More and more fun for Hunter in the water! He really enjoys each progression and loves to splash while with Bonnie. Hopefully everyone can see the little advances that are being made.

Part 3

This time around I caught the last bit of his lesson before running off to the change room to get Hunter back. You will notice how Bonnie has him stand up at the edge of the pool, and gets him to enter the water from a standing position. Something else I have noticed while watching his videos is that she has been provoking Hunter to "jump" into the pool even when he's seated at the edge, by coaxing him with her hands behind his back. I noticed each time she does this, she tries a few times to see if he will come in to her but knowing at this stage he wont, she follows up by bringing him into the water herself shortly after. To me (and I am presuming only) this is the way you entice muscle behaviour and repetition for him to realize that this is the action she wants him to do, and has him do it with her help each time. I am guessing eventually we will get to see Hunter access the water on his own into Bonnie's arms.

My Journal - Week 86 (21Apr11)

2011-04-21T23:47:00.021-04:00

Unassisted, Unaided Standing up!!

It's official, we have it on video. Today, I was able to get a video of Hunter "self-standing up". To me, it's funny, all it takes is a simple dryer sheet, tissue or paper and even an empty tissue box! It's all about distraction and confidence. One allows the other to cultivate and grow. It's the story of Hunter's life. What we know he can do, he wont - for lack of confidence. What he eventually does he does out of distraction or deception!

So, Yay for Hunter! With today's repetitive self standing occurring we are hoping the many amounts of times that he completed this new milestone will ensure that he is much more confident with his new ability and that he will continue to do it without looking for walls or furniture to go to first!

So what did we do to encourage this? I know that Hunter is both a visual and kinesthetic (physical) learner - where being a visual learner is how he recognizes what to do, and is his motivator and kinesthetic is his practical way of getting there. I figured it would help for Hunter to see how to stand up by himself (thus watching various children who were already doing this) and then to also to position him to physically go through the motions of standing up using his own body and not furniture or walls. After watching his cousin standing up and also watching his friend Taylor Rose a couple of weeks ago, I noticed the way they each stood up by themselves. With his (typical) cousin, "tripoding" (bum up hands down) worked and watching his friend Taylor Rose (also has Ds) she "tripoded" but used her knees to get the rest of the way up. I noticed for our kids, where their bodies may be perhaps less muscular or shorter in certain areas such as length of arms or legs - they need to go through an extra step of figuring out what works best for them. Most people don't realize that having to learn an action or milestone and then secondly learning a completely different way to do it (which would be physically unnatural for most others) is what can cause or is the delay. Think about it though, is it really a delay or is it just that there is something more! Children with Ds, or perhaps Hunter more specifically as an example, are going though more stages to accomplish physical events which in hindsight may obviously take a bit more time if more steps are involved! I had to laugh however, it may seem backward to some, walking and running first before being able to get to a standing position unassisted, but I think Hunter is a smarty pants to have figured out how to do it this way. Why not be mobile first? He knew he had access to getting up so, there was no reason to delay walking whatsoever! Whatever and whichever the way, practice does make perfect!

Oh and for the record, just how cute is it that he gets mad when I want to take the tissue away, or that he says "Bye Bye" at the end and of course the best part of all is that each and every "stand up" was done with only one hand!?!

My Journal - Week 86 (19Apr11)

2011-04-19T23:19:00.009-04:00

Swimming continued; Walking continued & now

- Self Standing!

A lot has been going on these past few weeks and while it's not a great excuse for not posting, one thing is for sure, I have a lot of material!

First things first, lesson three of Hunter's swimming! Without getting overly wordy, Hunter has made wonderful little progressions that without writing about wouldn't probably be that evident to everyone else. He's now able to put his face in the water (his head goes more than half way under water), float by only being held by the back of his head with one hand, and stand up to "jump" into the pool. (Not really jumping, but being brought into the water from a standing position as opposed to from a seated position). Lesson four will be this Thursday.

Part 1

Part 2

Part 3

Last weekend (16th April) we went to the Toronto Baby Show sponsored by the Babies R Us and we were lucky to get (pay for) a photo shoot of Hunter with two live bunnies! Here are a few of the precious photos.

Cool, I have an Easter Egg!

Ah ha! Bunny's make Easter Eggs!

Mommy, can I have this Easter Egg?

Hey, what do you mean they don't lay Easter Eggs?

Are you sure? It seems that there are a ton of Easter Eggs here and two bunnies?!

Now I am confused. I have eggs and these two bunnies.

Mommy, can I have some of these Easter Eggs?

Yay! My Mommy said I can have some Eggs!

Maybe if I am good they will get me a Bunny too!?!

Humm, I wonder how good I have to be to get a Bunny for Easter....

Maybe they will just give me one since they call me Hunter Bunny?!

And I have been soooo good, I think they will want to get me a Bunny!

Onto Hunter's latest milestone. SELF-STANDING: Just today, (and I have been saying that this would be happening within the next few days) Hunter surprised me with his newest effort. I was talking to a few people during the day, exclaiming how well Hunter has been walking, and running. The only thing left to do was to get Hunter to stand up on his own without the use of any furniture. I had been noticing that (like in all Hunter's past actions of learning) Hunter can do things that we want him to do, but convincing him that he can do them is another story. This latest confidence issue pertained to his self standing. I had noticed that when Hunter holds something in his hands, he forgets that he "CAN'T" do something. And today was no different. He concentrates so much on whatever he's holding (aka the distraction) that he does things like walk, talk or stand up by himself. I had just mentioned to my own mother earlier in the day that all it would take for Hunter to get up without using anything furniture or walls would be for him to be distracted and be holding something else. Sure enough, after his shower (yes, Hunter wants to take showers now, not baths...) he walked out to our bedroom, sat down in front of my laundry bin (which happened to be full of clean clothes and had a Bounce dryer sheet inside the clothes pile) pull out the dryer sheet with his left hand and used his right hand to push up from the ground to stand up. I knew it was only a matter of "distraction" time! I was so proud of him, clapping and telling him he did a great job, and I am sure Hunter was so confused about what I was praising him about, that likely he's made an association to pulling my dryer sheets out of my laundry bin! There is something to be said after all about leaving your clean laundry in bins and not putting them away! Now, it would appear that all we need is to remove all other access to cheating to stand up. Ya, right. Funny though, in order for Hunter to master his skills, we need to take away anything that makes it easier to do it the easier way. This time around though, it would be extremely difficult if not impossible to remove walls, furniture and everything else he uses to get himself to a standing position. So, I am gathering it might take him longer to realize and remember he can do it on his own. Never the less, he did it and I saw it! It's so rewarding.

As always, more to come!

PS - I have created a brand new Play to Learn & Parent Support Group YMCA flyer for 2011. See here for link to flyer: https://acrobat.com/#d=igeBlRPgpWU1XmRPQnZ9fA

Or see actual flyer here:

My Journal - Week 83 (31Mar11)

2011-03-31T23:59:00.061-04:00

ALL INCLUSIVENESS ROCKS and with GOOD REASON!

And Fun Video Clips of Hunter Walking, plus other photos!

One great thing (that I talk about over and over) is the wonderful motivation a child gets when he or she is able to see another child doing things that the observer has yet to do or try or perhaps was once unwilling to try. I have spoken at length about why all inclusiveness is key and a necessity for children with special needs or any kind of developmental delay. I have also mentioned that the proof has always been in the pudding, not just in medical studies or opinion. I have seen (at various stages of Hunter's development) the benefit of having Hunter see and interact with typically developing children his own age or older. Just this past weekend Hunter had the wonderful opportunity to see and play with his cousin who just about his age (shy 3 months) but just walking, and further was also able to meet a three year old very sweet girl who happens to have Down syndrome, who also was running circles around Hunter. Hunter has always been very good with interacting with his peers, friends and family, whether his own age or not. On the weekend, during play with his cousin, Hunter had a terrific time playing, chasing, talking and subsequently learning - more than we knew. While Hunter had taken his very first steps back in the beginning of February (at 17 months), the walking had not quite yet cultivated into proper walking and despite our attempts to "push" him to take those steps more often or better, he seemed to flat out refuse with his typical nonchalant attitude, "been there done that" or, "did it once, why do it again?". All until, seeing other babies and friends, "WALKING". Since Sunday, Hunter has been walking up a storm, literally. It's no longer hard to get a video, nor is it a challenge to get him to do it.

Today, Hunter's Early Intervention Consultant (Jenn) was over for a monthly assessment, which in recent times has become a major effort to get Hunter to "show off". Once upon a time, showing off was the norm. Until, today. Hunter decided to break free of his recent "shyness" and perform once again like the little trooper he used to be. For over 45 minutes straight, Hunter showed Jenn - task after task, mastering each item, moving on and demonstrating that he is in no way "delayed". His cognitive abilities seem to be (for the majority of tasks) right at 19 months, with a few past his age and in the 21 month range. It's no wonder that the area he excels in is his vocal and environmental recognition skills - blame Mommy and Daddy...! Many of his gross motor skills are in the 18 month and over range such as climbing 13 stairs to the top, and stepping down (only one step), not to mention the walking. It's hard not to be proud, even if the things he achieves are the "norm" for others and "typical", knowing fair well that it's expected that he may have delays. For parents of a child with Down syndrome (and other special needs), every step is precious, every milestone is treasured. Every assessment is a time where we as parents might suffer a bit of stress - wondering many different things, and sometimes the same old things. Whether we realize it or not, we may hold our breath wondering if your child has delays and how (if anything) something can be worked on to help him meet or get to those goals. And sometimes we are met with news or information that we might not expect - positive or not. For example, until there is news that we consider "good" news, we might think to ourselves - have we done enough? Could we have done more? Often for us personally, we are pleasantly surprised, despite the worry. When there is a fear that maybe he might have a delay in an area, we argue with ourselves that we "should" have done more. Truthfully, what we have to remember is, (as a parent of a child with Down syndrome) if our child did not have Down syndrome and didn't meet a milestone according to a "chart" of some sort, it would not be a question. It would be a matter of, "every child meets their milestones when they are ready", and nothing more. So, it's important for me to remind myself and other parents, to "FORGET" the milestone charts (despite the reality of it being nearly impossible) and just relish them as they come, without question or conflict. More thinking like our child is "typical', less about Down syndrome. I think it's well established that thinking "Typical" can often equal being "Typical" - because truthfully, what's to stop us from thinking that way (especially when outside influences are removed)?
So for now, we need to concentrate on the here and now. At this stage, our son is just fine and wonderfully typical. I will not be worried about tomorrow being negative (or rather the possibility of negativity). We know each day, we take as it comes, but we also work like there's nothing stopping us from doing "everything" that "everyone" else does.

Enjoy the short but fun clips... but I have to say, the best is definitely the last one! And see below for photos.

Part 1

Part 2

Part 3

Part 4

Part 5

Part 6

And finally, some perfectly, absolutely adorable recent photos including some of Hunter and his newest girlfriend, at YMCA play to Learn for Kids with Special Needs!

Me & My best buddy Vaun at the Durham Ds Association Meeting

Look at me! My Mommy & Daddy took me swinging!

Yep, I love swings. Hey - Don't you love my outfit? Matching sweater & socks!

My Daddy makes me giggle so much when I swing!

I keep telling Daddy to go higher, but Mommy said no! I can take it though!

Nothing like swinging. I bet you want to try with me - you know you wanna!!

This is my new girl friend Lexi! She loves to give me kisses!

I'm playing shy, but I give good hugs too.

My Mommy taught me to be a gentle-boy. Can I get your seat Miss??

I think she's independent, she said "no!". I'm confused!

Well, I'll wait here at the "oatmeal" box for her... maybe she'll notice me now?

Looks like it worked! Now she's playing with me! Finally!

Ahhh! It did work! I am getting hugs again! I must have done well.

My Mommy told me share my Puffs. I gave them to her Mom. Maybe I'll get one?

Looks like being patient works. Two for Lexi, one for me!!

My friend Lexi is so nice, she helped to give me my Puffs to eat!

My Journal - Week 83 (28Mar11)

2011-03-28T23:59:00.009-04:00

So, He's NOT "Special"???

The reality of other peoples non-acceptance regarding our son....

To my dismay, we are currently having to deal with a somewhat well anticipated reaction, or stereotypical perception of our son being "Special" or having Down syndrome. It's not shocking to me at all that we have to face this, but what is shocking is with whom the stereotype/reaction is from. The people who I never thought to worry about educating were our family but having said that, it's usually one's own family who will cause the most amount of grief when it comes down to it. Family are the ones who generally don't hold anything back, some having less tact than the general public, and the fact that it's family mean that feelings come into play and somewhere, somehow, someone's may get hurt. We tend to expect a lot from our families but it stands to reason why. General acquaintances we can walk away from if we don't like their behaviours, and the general public we can ignore, but family - well not so much. Sometimes for the sake of family, we do the opposite of expecting comprehension or understanding. Sometimes, in order to keep the peace, we pass the buck (so to speak), holding our tongues so that we don't step on toes or hurt feelings by pipping up or correcting inappropriate/unacceptable behaviour that we know "if it were anyone else"..., we'd have at them. I decided (long ago), if I am to be true to me, (and more importantly) true to my son, I wont remain quiet with the people who should mean the most to us. It would be very hypocritical otherwise, and I am just not okay with that.

The situation:

A long while back a family member told us, (regarding having a child with Down syndrome) "I could never do what you do. I give you credit because if it were me, well I couldn't do it." Initially, I said nothing about the comment but chose to use that person's comment to help others to understand that I was not superhero because often times "choice" can be irrelevant for most people who have a child with Down syndrome - AND in our case despite there being a "choice" for us. We wanted our son. It made me realize that while the person who made the comment had no ill intentions, the fact remained - it could be taken offensively by some. Since I knew that the comment was not meant to be mean or harmful to us directly, the only comment I had in response to this person was - the exact same as what I chose to put in my blog and advise others: Anyone can say they couldn't do what we did/do, but the truth of the matter is if you are/were ever faced with the exact same situation, what you feel that your choice might be now, may not be the same if it ever occurred. I myself am living proof of that.

Now, the point could have ended there, but this person has since mentioned that same comment to us on two further occasions, making it three times in total. Keeping in mind, our son is now over a year and a half old. Each time I have continued to make the same reply as always, saying most importantly, 'one can say what they "think" they would do, but being in the position itself is completely different'. Sadly my story has now, two points. The person went so far as to explain to my husband and I, their personal reasoning and how they could validate knowing that they couldn't raise a child with a special need. This person had used their own personal situation (as an explanation to us) - about having a premature infant and fearing having that child with a serious developmental delay (instead all the while using the words 'mentally retarded') and telling the doctor that they needed to know if that child would or would not be delayed. Only to further explain that if that child was delayed or "retarded", they could not do it.
The position that I was in, hearing this story, had put me into conflict (and not just for the use of the "R" word). I know not every person feels they can handle raising a child with needs, in fact I would be foolish to assume or think people would "want or choose" to raise a child with special needs (generally). But, it has never been my intention to make a person feel that they should, or even judge a person who feels they can't. Educating people is something I do, but only where it's welcomed unless they are being knowingly offensive in which case I don't put up with it. More over and specifically it seemed that this person needed to validate their position (on raising a child with special needs) by saying, it's better to personally admit that one can't do something than to pretend or lie. But they are not in our position and I see no purpose of telling me, a person who doesn't even remotely feel the way that they do. Frankly (and without being oppositely and equally offensive) the way I see it, we had never asked this person if they would raise a child with a special need or ever wondered if they would, so for us as a family (myself, John and Hunter) hearing someone's position about it once - is (at most) interesting but several times after the fact... questionable! In other words, we were left to wonder, what exactly is the motive? After many hours of pondering, we came to realize that for this person, it was all about being uncomfortable and this was their way of justifying it.

The story continues....

For over a year and a half of Hunter's existence, we have had the pleasure to visit and keep company of this same person - who (for clarification) is someone we actually enjoy being with and sharing a many debate and philosophies. And until recently, we had never questioned this persons reluctance to hold, interact or even speak to our son. Initially it seemed that maybe (and despite having adult children (who are currently our age) of their own) this person was just not a "baby" person. We were sadly shocked to discover, this wasn't the case. We experienced first hand, this very same person - carrying, laughing, cuddling, holding, and playing with a baby who is actually 3 months younger than Hunter in such a wonderful "grand-parently" manner, that it may have caused us to stare in disbelief. Now, some might think, maybe it's because Hunter isn't this person's grandchild - and they would be right. Some might further think, perhaps there wasn't the same opportunity for Hunter to have been treated the same way, but that would be incorrect. My husband (and I give him great credit for this) tried very diligently to get this person to be involved and at least interact with Hunter, short of putting Hunter in this person's lap and walking away. Some might think we were just being over sensitive about the whole thing, but we have had a long chance to ponder it since it occurred. In that moment, where my husband was trying to get his son some attention from this person, and in that next moment where Hunter sat on the floor looking up at this person holding another baby, playing, laughing and having a great time - broke our hearts. It's very hard not to be "sensitive" about it, but we still said nothing at that moment, unsure of exactly what was taking place.

And then there's more....

While the "ignorance" (- and ironically what else could be better used to describe "ignoring" a baby) occurred before the 'third time explanation' of, "I couldn't do what you do, caring for a child with special needs"... which is the reason why nothing was said at the moment of our child being "ignored", and also why I feel that the explanation was given to us, perhaps as an explanation for what took place.... My husband went on to amaze me further - My husband, (who for all accounts and purposes was probably more confused at this persons behaviour than I was simply because I do more supporting and advocating on a regular basis) said very matter-of-factually, "There is nothing 'special' that I do for Hunter that I haven't done for my other three children!" He went on further to say, "I don't do anything special or different with Hunter than my other three, I treat him exactly the same way as all of my other children". At this point, one would think - any person hearing this might pause and really think, but the answer my husband received was, "I still couldn't do it".

Some have said, you don't need people like that in your life. More have said, Hunter doesn't need that. AND ultimately, they are right BUT the truth of the matter is, I need NOT to ignore or forget about people with this type of sentiment/stereotype. It's all the more reason why I struggle so hard to advocate. But there is a line and a limit. At this point, some may argue that Hunter is so young, he probably wont recall this specific situation - but my husband and I will. We have worked so hard to ensure that everything that we do for our son is all about equality, love and no limits. We push for inclusiveness, tolerances and understanding. If we ourselves see that Hunter is typical, and work so hard at it - it makes absolutely no sense for anyone to praise us for doing it, and then make a mockery of that praise by undermining everything it stands for. And, should it be that Hunter is less than typical, or has more delays as he matures - then I simply say to those who would rather not feel "burdened" by baring any of that weight; we don't feel that anyone need to pretend or go out of their way to be there. It would definitely bother us more, if we have to pretend that someone is comfortable, when clearly they are not.

But, in this story, we are obviously troubled and saddened that this is occurring. This person has been such a positive impact on and in our lives and realistically, we would definitely mourn the loss of togetherness at the expense of someone not willing to be, "educated" or "comfortable" about and with our son. But, our son needs us more than we need to put up with hypocrisy or excuses. So as always, we hope that people can change.

My Journal - Week 82 (25Mar11)

2011-03-25T23:59:00.016-04:00

HUNTER'S WALKING FINALLY CAUGHT ON VIDEO!

And...

Hunter's 2nd Official Swimming Lesson!

While I know it may not be super exciting to watch four videos of Hunter learning how to swim, (after having seen the initial 1st lesson) I did promise to keep everyone updated on his progress and time in the pool! However, more importantly was the promise I made to catch Hunter's unassisted walking on video, and I DID IT! And I kid you not, that job is a feat in itself - not his walking... the videoing of it! Those who know Hunter, know what kind of photogenic, not at all camera shy baby, he is. So, hopefully you can appreciate the time it's taken to get this on video - as much as we do!

So without further ado, here is our video clip of Hunter (and the caption I used for You-Tube to describe it):

Even though Hunter's very first steps were taken on the 9th of February, I have been trying ever so hard to get a bit of it on video. And as promised, here is a short (very short) clip of Hunter walking on his own, unassisted. This short SIX step shuffle was caught after he actually took about a TEN step shuffle only moments before it! I kid you not, it's nearly impossible to video Hunter doing something extraordinary simply because he will STOP everything he's doing just to be a "HAM" for the camera. And, he is one child (possibly of many) who will not perform on command. He is quite the opposite actually, where he will go out of his way NOT to do something because you are watching him. He will even check people out to see if they are watching before he attempts to do something he's been working on. Very sneaky and also cautious! I actually had to hide the camera several times just to get this shot. So, enjoy!

Just as an update to this video (which took a few days to get uploaded), Hunter has since walked halfway across my best friends living room! It was the best walking he has ever done, sans shuffling! He actually took proper steps and literally walked about 5 feet, all by himself! It was most unfortunate that I did not have my video camera or cell phone poised and ready to take the video. But, at this point it's only a matter of time that Hunter starts running around the house!

Now, here also is the 2nd swimming lesson that Hunter had on Friday. Before each video is the caption I wrote for You-Tube and also to describe what was happening.

Hunter's 2nd Swimming Lesson - Part 1:
Today we recorded Hunter's 2nd swim lesson and once again he has surprised his Mommy & Daddy. I had believed that he would have a melt down this time around, knowing that he was going to be separated from his parents - but instead of doing so, he managed to have a great lesson. He did seem a tad bit upset while sitting at the edge of the pool (I think it was due to having a different deck supervisor "Dawn" to hold him, meaning learning to adjust to yet another person) but whenever he saw his instructor Bonnie coming to get him, he livened right up.

Hunter's 2nd Swimming Lesson - Part 2:
Hunter has already demonstrated a progression from his very 1st lesson that I wasn't sure he'd get to so quickly! In his lesson with Bonnie he actually allowed her to lie him down in the water on his back, and further allowed her to do it while only holding his head! This kind of progression had me in awe simply because Hunter trusted Bonnie enough to do it without losing his mind AND after only one short lesson a week ago!

Hunter's 2nd Swimming Lesson - Part 3:
While it may seem that Hunter is very sad and pouting at the beginning of each recording, (and my professional parent reasoning is that he's truly more sad about having to sit outside of the water rather than my initial worries of him being distressed about Mommy & Daddy not being there) one thing is for certain, he enjoys kicking and splashing water onto Bonnie when she sits him on the edge of the pool during his lesson with her! Watch how he kicks water onto her each and every time she places him on the edge (but not with Dawn when he sits waiting). It becomes more obvious to Hunter that it's funny to kick water onto Bonnie in his lesson - in the next and final clip....!

Hunter's 2nd Swimming Lesson - Part 4:
For this final clip of his entire lesson, it's interesting to note the things Hunter does when he's on his back learning how to float! He tries to kick non-stop (and I think Bonnie is telling him not to, so he can learn to float) - and that is Mommy's fault since it's something we initially taught him to do in the full size bath tub and also when we took him swimming, he also pops his hand into his mouth - something he has always done when he's either being tickled, gets excited or is doing something scary like being held up in the air by Daddy.
It's very interesting how Bonnie seems to sooth Hunter by rubbing his forehead while she holds him on his back in the water. I think it not only makes him very relaxed, it calms him to the point of nearly sleepy! Lastly, it seems appropriate that this was his last turn with Bonnie for this lesson since he started saying "mom, mom, mom" (lip read by Mommy) and also just about fell asleep in Deck supervisor "Dawn's" arms after Bonnie handed him off to end his lesson. The interesting thing was, despite his tiredness and calling for Mommy, he willing put his arms up to go back into the water at the end, making it clear he wasn't done being in the pool!

Keep watching for more lesson video updates!

My Journal - Week 82 (23Mar11)

2011-03-23T23:59:00.005-04:00

It's official:

I am now an Executive Board Director of the
Durham Down syndrome Association!

After a wonderful meeting with the Durham Down syndrome Association this past Tuesday, it has been made official that I am now part of the DDSA executive and a board director. I was very happy to get so involved with the association, as I feel I have many years of executive experience with past endeavours that I can contribute, and also a whole part of me which has dedicated the last two years to educating and supporting the Down syndrome community.
Currently my responsibilities include being the Director of, "Resources", "Memberships" and the quarterly "Newsletter". All of these responsibilities are right up my alley and I feel that I have much to offer in those areas. It's very important for me as an educator and a supporter to be able to provide services and be of service to support the association and ultimately the Down syndrome community. Every step that I take, every thing that I do, helps Hunter and everyone else who needs any sort of assistance or advocacy. I take my role very seriously as it has been mentioned that I prepare for my future position to become Chair - and I would gladly accept that position should they want me as I aspire to do just that. For now, I am completely thrilled to be able to help and also learn.

It is with taking these responsibilities and also knowing that an association such as this one which needs people, who are willing to go that extra mile; that I do exactly that. This very association not too long ago, was in jeopardy of having to consider amalgamation because there were not enough people to help it to push forward and succeed. Every organization needs new influxes of people, fresh insights and dedicated persons willing to step up, and help the association to become a positive resource for those families who want and need to have exactly that. At the same time, the organization needs it's back bones - the original people who have the knowledge and skills that made it what it was then and allow it to grow. Together, an obvious mix of strong volunteers will make a kind of difference that the people of Durham need it to be.

In being part of this association, I can definitely pass on information that we have which can assist and benefit anyone who reads my blog and also help to spread the word relating to other wonderful things such as seasonal Events or Fundraisers (which will be coordinated by the Director of Fund raising).
As an Example, some future/upcoming activities or events can include things like (but not limited to):

dances (Christmas)
parties,
picnics (summer),
bowling and sports,
a Buddy walk,
awareness activities (booths/information sessions/shows),
and other group programs (Parent/Child Support & Playgroup YMCA)
Open general meetings (to find and meet other families)

As part of my duties, I am hoping to make connections and gain memberships from the many families here in Durham, Ontario. Note: Memberships are not limited to the residents of Durham, anyone can be a member. I personally am a member of four Down syndrome associations. It has been suggested that there may be some 200 plus families that have a child with Down syndrome whom we (as an association) have not yet reached. I am hoping that I can seek out and find some (if not all) of these families and primarily provide resources and regular information that can help to better the lives of individuals with Down syndrome.
And of course, as an association - we are always looking for donations and would be happy and extremely honoured to receive any amount that a person is willing to give. Any amount over $20.00 is automatically issued a donation receipt for income tax purposes since the DDSA is a registered charitable foundation. PLEASE feel free to contact me directly if there is interest in becoming a member or making a donation! Similarly, if anyone is interested in receiving information about the association or resources in general, they can contact the DDSA directly (905-433-4100) or myself (Sandi) directly - via email or phone (see "All about us" or the "Contact Form" page here on my blog at the top under the "Welcome To Our House" banner). The DDSA website is www.ddsa.ca which can always be located as a reference in my blog on the right hand side in my reference websites. Stay tuned, as I will also be working to get the DDSA website updated.

My Journal - Week 82 (21Mar11)

2011-03-21T21:14:00.017-04:00

HAPPY "WORLD DOWN SYNDROME DAY" 3-21

Happy World Down syndrome Day!! For anyone unaware of why today's date is considered World Ds Day, it's because of the arrangement of the numbers in the date. Down syndrome or Trisomy 21 means three copies of the 21st chromosome, thus 3-21 or today's date, 21st March (21-03).

Instead of just talking about Hunter specifically, I thought I would post/share a few facts that can be found throughout my blog and are also in my sub blog pages. Below that I have shared some insights about Hunter.

FACTS ABOUT DOWN SYNDROME

• Down syndrome is the most common chromosomal abnormality occurring 1 in every 800 births. The exact cause is unknown.
• Down syndrome is one of the leading clinical causes of delayed development in the world – it is not related to race, nationality, religion or socio-economic status.
• Approximately 80% of babies with Down syndrome are born to women under 30 years of age.
• 30% - 50% of the individuals with Down syndrome have heart defects and 8% - 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• There is wide variation in mental abilities, behaviour and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• Individuals with Down syndrome benefit from loving homes, early intervention, education, appropriate medical care and positive public attitudes.
• Individuals with Down syndrome learn at different rates and benefit from inclusive classroom settings just like their peers.
• Increasingly people with Down syndrome are completing high school, gaining job skills, finding meaningful employment, pursuing post-secondary education, and getting married.
• The intentional strengthening of human connections in healthy, inclusive communities that nurture values of interdependence and practice natural forms of mutual support benefits people with Down syndrome as it does every Canadian.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.
• The Canadian Down Syndrome Society is a national non-profit organization dedicated to improving the lives of persons with Down syndrome.
10/24/02 - CDSS

LANGUAGE GUIDELINES
• The correct spelling is Down syndrome. There is no apostrophe “s” (Down). The reason is because in English adding an apostrophe indicates that ownership is involved. Dr. John Langdon Down provided the first formal description of the syndrome, but he did not have Down syndrome and thus no possessive is used. Also, the “s” in syndrome is not capitalized.
• Use person-first language. Individuals with Down syndrome are people first. The emphasis should be on the individual, not the disability. For example; a baby/child/adult with Down syndrome, not “Down syndrome” child or “Downs baby”.
• Down syndrome is a chromosomal abnormality that is present at conception. The term “birth defect” is not correct.
• Down syndrome is a developmental disability. People with Down syndrome usually have mild to moderate intellectual delay. The term mental retardation is considered outdated in Canada and should be avoided. The term mongoloid is considered extremely inappropriate.
• Avoid generalizing people with Down syndrome as “always loving”, “always smiling”, or “perpetually happy”. People with Down syndrome are not all alike.
The diversity of abilities and characteristics among individuals with Down syndrome can be best described as the same for the general population.
• Avoid judgmental terminology. A person with Down syndrome is not “suffering from”, “a victim of”, afflicted with” Down syndrome. Down syndrome is not a disease and these references only diminish a person’s dignity. Suggestions include “living with Down syndrome” or “has a medical condition known as Down syndrome”.
• People with Down syndrome have the same rights as everyone else and should be treated with respect.
CDSS

HE'S HIGH FUNCTIONING!?

A few days ago I touched on a topic that I would like to spend a little more time on now and in the future. "High functioning" versus "Low Functioning". I find it really important these days to ensure that in general people understand that Hunter's abilities are not unique or that he's some super Ds genius. While I am super pleased about his abilities and I don't find it offensive in the least that people think Hunter is very capable and smart, I often feel compelled to explain to those who assume Hunter is so especially smart, that it's just the way it is - more specifically, "he" is! I believe children are often a product of what we make them. I do honestly believe that if we set goals, and expect no less than typical outcomes the reality is our children can and will achieve them. However, it's not to say though, if a parent expects their child to be a genius that they just will be. I think it is more about not limiting a child due to preconceptions or stereotypes. I am sure there are parents out there who could argue that they had tried everything, that they pushed and pushed and yet their child isn't "typical" in terms of cognitive/physical development. So rather then me mislead people by suggesting that everyone who has Ds "doesn't" have delays, I'd rather not be unrealistic by painting insanely dreamy pictures. What I do want people to know is; that anyone who has Ds shouldn't be limited. What that will mean in the end - is up to each person. Just as any person in the general typical population has ranges in abilities, so to does any person with Ds. Being able to excel cognitively doesn't start with 46 chromosomes as a prerequisite, and at the same time, it doesn't stop with 47 either. It's interesting how we don't assign ranges to people who have typically arranged chromosomes, yet it's plainly obvious that there are broad differences in IQ in each person - not due to any chromosomal abnormality. My newest saying and belief is, there should be no ranges when it comes to Down syndrome.
And further, I had to come to realize there is no such thing as "high functioning or low functioning" children with Down syndrome, it's only the caregivers who are either high or low functioning. The proof has been in the pudding for years. If you institutionalize a child, just how smart do you think they would be? If you cultivate and educate a child, what would the answer be then? Obviously thoughts are changing because what was acceptable 40 years ago (to never bother educating a child with Ds) has changed to realizing that today, people with Down syndrome are graduating from university. This is not a fluke. Nor is having a job, marriage and being a productive member of society. So, as it stands the last pieces to ridding the world of negative stereotypes come with constant positive educating. When people can make that leap in comprehending simple things (for example - limitations with speech or speaking clearly do not equate to being unable to function), then perhaps we will have a much clearer view of reality and expectations!

My Journal - Week 81 (19Mar11)

2011-03-19T23:59:00.013-04:00

WELCOME TO OUR HOUSE -

AN ANALOGY

The title you know... or hopefully so! It's the title of our blog, it's the title of my upcoming newest book (that has been in the works the longest) and it's also the title of the Analogy I had written way way back when - when Hunter was just a peanut in my womb.

Back when I first started writing, or rather when I first started "really" writing I wrote the analogy that has come to be the "token" part of my blog, books and other things Down syndrome. I had it copyrighted, I also had it published in a few places such as online in association websites and my personal works. I had gone a few steps further (back in 2009) and reached out to a few magazines and newspapers - looking and hoping that they would like to publish the analogy as part of a story or single article submission. Two different magazine companies eventually got back to me and told me that they would be happy to publish my analogy. One of those magazines was "Exceptional Families". This is a magazine that no parent who has a child with any type of need should be without. The editor contacted me and the rigorous work of getting my story into an edition was born. After many edits, photos and emails, my story hit the press just in time for the Spring 2011 edition - Volume 6, No.3.

I am so very proud to present, my two page spread of "Welcome to Our House - An Analogy" in print.

Pages 30 & 31 in the magazine - Click to enlarge & then click again to magnify more

Exceptional Family magazine - Spring 2011 edition Volume 6 No3.

You can find this magazine in any Chapters book store or any place that sells a large variety of magazines. I do believe however, this is their last "printed" edition as they will be moving to an online edition. I am sad to see such a wonderful magazine stop printing hard copies but I do fully understand that the future is all about the web and online subscriptions. I have certainly gained a lot by reading this magazine, from doctor articles to very specific information on Down syndrome in particular as well as many other types of medical special needs. Exceptional Family will still be available to order as a subscription, but as I read (on page 5) in this last printed edition, all future editions will be online.

On other fronts, I have not been taking as many photos as I usually do of Mr. Hunter-bunny so I decided to post a few today that I had taken this past week.

Yummy Mommy! I didn't know that peas and broccoli could taste so good!

Yes, it's true - Mommy actually made Daddy take a picture of my dinner....

Now that I am all done eating, it's time for a photo shoot of course!

And for the first time I discovered Mommy's tummy is bigger than my own!

Yes, it's true... my belly has suddenly taken over. I do believe my belly is now larger than it was when I was 37 weeks pregnant with Hunter. The sad reality? I am only 26 weeks pregnant in this picture. So when I say my belly has taken over, seriously - I mean it's taken over the whole wide world! I can't help but think how many pounds Hayleigh will be when she's due. They say (someone says) that if you have a small or lower weighted baby, you will likely have another. It's genetic. Well, I am pretty sure that will not be true in this case. I have already gained 20 pounds this time around and for my whole pregnancy with Hunter I gained only 20 pounds. I just hope I don't explode! My back is already causing me to be really uncomfortable. Having multiple serious back injuries and degenerative disk disease (to name one of the many medical issues that I suffer with relating to my back) makes pregnancy very difficult. And while it may not appear that I am suffering (as I sit there above with a smile on my face) I am in a lot of pain but seriously happy to be pregnant after all the losses I have endured. Make no mistake, pregnancy is hard enough on the body without all the additional medical issues I face. I am very grateful that I have my husband and parents to help me. Without their help, I'd physically not be able to get through the day. This coming up Wednesday, I finally get to see an anesthesiologist at Mt. Sinai hospital to talk about getting a spinal epidural to help with my sciatic pains. For three years prior to my pregnancy with Hunter, I used to get epidurals in my L4 - L5 every three to four weeks to help minimize the nerve pains I suffer with. After Hunter was conceived I had to stop getting the spinal injections. This time around, the pains I suffer with have progressed and it's nearly at a point where I can't function and I am always in pain. Imagine a constant electric shock or electric knife stabbing from your lower back and down your legs. That's what I deal with and the pregnancy only makes it worse. Hopefully I can get a bit of relief with the epidural as I did in the past. (It's not quite the same as an epidural you receive in labour in terms of complete immobility but the numbing of the nerves as a result is the same.)

Hope to keep you all posted as things progress.