3 Little Billy Goats

Happy Heartiversary, Aidan!

2012-01-23T12:11:00.000-08:00

Yesterday marked the 5 year anniversary of Aidan's heart surgery. We made a cake together, complete with bandaid:

We sang, "Happy heartiversary," Flintstones style. Then we all helped to blow out the candles. Afterall, we were all in it together.

Aidan clapped...but wouldn't eat any of the cake. Or taste the icing.

We will continue to celebrate as much as possible, because everyone out there who's gone through something like this, knows it is pretty much life changing. Being in the Pediatric ICU for that little amount of time was the most humbling experience of my life.

Liam, the middlest of billy goats, was playing piano on the weekend. He was playing a medley of songs that he knows. During the Buffalo Hunt, he said, "this was how fast my heart was racing waiting until Aidan had his heart fixed." Then he moved into Somewhere over the Rainbow - "and this is how joyful it felt when he was done."

Amen to that middle billy goat. Amen to that.

The Lake Huron Carolers

2011-11-05T17:03:00.000-07:00

Cards are 5 x7, high-quality printing done at Art Ink Print.

Proceeds from the sale of this card go to support the Greater Victoria Down Syndrome Society Music Therapy Program.

If you know of anyone looking for art cards to give this Christmas, please direct them to this site. Many thanks for helping to spread the word!

Together we're better!

Carol N.

How do you do?

2011-09-07T23:29:00.000-07:00

Picture this:

A circle of moms chatting outside the school doors after the classes have filed in. Aidan marches into the circle and proceeds to shake hands with each mom. Insert a cute little chuckle attached to a blond-haired, blue-eyed, sweetie boy. He knew he was being charming.

Aidan's accomplishment? Wrapping my friends around his little finger right along with me.

(BTW - the photo is an old one - but I love it!)

Kinder visit

2011-09-03T07:55:00.000-07:00

Aidan and I are venturing into unknown waters next Friday. He will have his first day of kindergarten at the same school his big brothers attend, and I will be off to teach my first class at the university. It is truly fitting that we are sharing our first big day, as he was born on my birthday - and has truly become my sidekick over the past five years.

On Thursday we went to visit with the kindergarten teacher, and I just wanted to highlight a few of the beautiful things she did to welcome Aidan (and me) into her classroom. Why do I want to do this? Because we (parents) often express what teachers are NOT doing right (me included). . . rarely do we shout their praises - and I think it's important that we have a model of excellence out there in the blog world.

One. Mrs. F. greeted Aidan and got down to his level (which he promptly copied and crouched down too).

Two. Mrs. F. said how excited she was to have Aidan in her class, and how she was busy preparing her classroom with things that would be developmentally appropriate for him. She showed us a few of the items and Aidan had an opportunity to engage with them.

Three. She had a gift for him wrapped in red tissue paper. Not that I believe teachers need to give gifts to their students, but the way she gave it was really nice. It was a gift for him to open and keep at the classroom. Something to share with the other students. BTW - Aidan played with the paper, shredding it and throwing it in the air. He couldn't have been happier.

Four. Mrs. F. asked me how I was feeling about Aidan starting school. She reassured me that he was going to be very loved, and that he already was loved by her. She shared a story of her own attachment to her daughter, now in her twenties, and of her own feelings of separation.

Five. She told me that if I ever saw something that she was missing in her teaching of Aidan to let her know.

Blue ink on a white page

2011-08-07T09:11:00.001-07:00

Today I am a tired mother who wants to be a writer. Is it really a bad thing that I want to go away for a while to find my writing? I dream of a place where nobody claims a piece of me. A place that inspires, but doesn't overwhelm. A nurturing sort of place.

Does such a place exist for a mother of three?

This morning I tried to find a piece I'd written a while ago about my three months in Istanbul. I thought about reworking it for a literary journal, but now I can't remember where I placed it. In the deep dark murky space that is my brain, I picture it written in my lousy handwriting with blue ink on a white page.

Almost all of my scribbles are written with blue ink on a white page.

I just went through an entire journal - and stumbled on pieces of writing I'd completely forgotten about - including the beginning of a YA novel that has promise. Now I will go search through other journals looking for the Istanbul story - though I fear finding other pieces I've forgotten about that will plunge me further into longing for a space to get my act together.

2011-07-24T06:09:00.000-07:00

My heart goes out to the people of Norway.

I am so sorry.

How do you do it?

2011-07-10T06:49:00.000-07:00

When people see my paintings, they ask, "how do you find the time?"

My answer, "I don't do dishes."
Or, "I leave the dusting."
Or, "My respite worker, Elmo, takes over for a bit." (I'm a bad mom, aren't I?).

The truth is, I often have to snatch small moments. Five minutes for a tree trunk here. Three minutes to browse the books there. One minute to add some highlights.

You get the picture.

It's like the time I was trying to write a novel, and I took my notebook everywhere with me and jotted down little bits whenever I could. (Did you see the lady at the gym that day scribbling in her book, but not exercising much? That was me.) There's almost always a sense of "I've got a small window of opportunity and I must make the most of it."

That's how I do it.

Painting the Lemonade Stand for Superheroes

2011-07-06T07:02:00.000-07:00

I recently finished this painting, which I'd been wanting to do for some time:

For me painting becomes an act of meditation - or reflection. It's not like I sit down and think, "today I am going to consider __________ ." It doesn't work like that. I paint, and I let my mind wander off in any direction it chooses. Sometimes I'm surprised by where my mind takes me....but most often it is a memory from my childhood that I ponder while I paint.

When I painted the Lemonade Stand for Superheroes I was remembering something my high school art teacher used to say to me.

"Stop being so cute."
"But drawing cute things makes me happy."
"Yes, but these things are cliches - you could do better."

Huh?

Oh, well. I knew I wasn't going to be Robert Bateman painting each fine hair on a bear, or feather on a blue heron. Fine detail made my head spin. I had a deep respect for my classmates who could concentrate over fine lines, and careful shading - but that wasn't me.

Today I paint what makes me happy. Little characters I think are cute - or seaside views like a rustic lighthouse - or my grandmother's cottage.

I wonder what my art teacher would say?

I Dream of Old Brick Houses

2011-07-02T06:43:00.000-07:00

When I was home this Spring, I took a drive over to Wiarton and knocked at the door of this old brick house. I told the young woman who answered that my Grandparents used to live there, and would she mind very much if I took a picture?

This house has haunted my dreams for over twenty years. My grandmother's house, and the place where much of my childhood roamings took place.

On the side porch were two things that held my young attention. First, the piano: an old upright Gerard Heintzman. I would sit and lose myself in made-up melodies (really bad ones, I should add - I didn't know how to play). I never knew anyone who played it during my time except my sister and me, but I recently learned that before my grandfather passed away, my Aunt Margery would play Christmas songs, and my Grandpa would sing. Apparently he had a great singing voice.

The other thing that captivated me for hours of childhood was a white cupboard that held my Grandpa's medical equipment. Gosh, I just imagined opening the cupboard and the old smell (not an unpleasant one) just came back to me. Memories are incredibly powerful, aren't they?

The cupboard held the most interesting things - glass needles, sutures, cotton swabs, forceps, a glass eye-wash thingy, tongue depressors, and a multitude of other medical stuff. Funny that his stethoscope wasn't in the cupboard - instead it was in the toy box in the big old kitchen. I wish I had a photograph of that cupboard, but I never knew then that it wouldn't be there forever. . . such is the life of a child - we don't understand what old poets already know, that nothing gold can stay.

In this room we spent hours making up dances as we watched The Irish Rovers. Another thing I don't have a photograph of - so this one of Bev (my big sister) and my Dad will have to do.

If Birds Read Poetry 2 - and Someday Dreams

2011-06-28T09:28:00.000-07:00

Collage has opened a whole new world to me with my paintings. I have been dipping into my memory of poems and text I read twenty years ago as an English Literature Major at Trent University.

I have a little someday dream. . . to have The Little Gull Studio in a floating house at Fisherman's Wharf. I would sell paintings, cards, t-shirts, mugs, and host little painting workshops. It would be cozy and lovely and a way of life to make you happy. The best part? Aidan would work with me. And, perhaps if he wanted to, he could live on the Floating House.

Ah, to dream a little dream.

The Owl Swing: Poem for Babies Born with Down Syndrome

2011-06-28T07:29:00.000-07:00

Boat for Hope

2011-06-04T21:30:00.000-07:00

This is what we did today:

We celebrated family, community, and jolly-fun pirating :o)

Such a gorgeous day for this event! The lads had a blast - and will be talking about Boat for Hope all year. How do I know? Because they talked about last year's event up until today :o)

Thank you to Variety, Pharmasave, and all the volunteers who made this day so incredible for our little pirates. We are truly grateful.

And I am grateful because when I see the sailors, I think of my dad. Here he is on the ship giving my sister a bath in the sink in 1964.

Holiday in the Park

2011-06-03T17:39:00.000-07:00

Aidan and I were recently home to Ontario to visit family and friends and old brick houses (I love old brick houses). It was a whirlwind gift of a trip from my husband for completing my Master's Degree in Elementary Education (with a specialty in librarianship).

We visited our favourite people in four different Ontario cities/towns, and even took in a beautiful wedding where my cousin Scott and his bride, Tricia were married.

This was a trip where I got to see and do everything I wanted/needed to do, and then some. At the wedding (which was held in Stratford), I learned that my father was the youngest Captain to sail on the Great Lakes. How did I not know that? My Aunt Elsie's sister, Eleanor, told me this little detail that made my heart swell up with pride. One smart cookie, my dad was.

I also learned that Aidan could dance until 1:00 in the morning Ontario time (10:00 our time). Who knew he was such a rock star?

My three sweet nieces were a delight to visit with. I am so very proud of them - they are amazing. Here are a few photos of our visit with my sister and her three girls. I should mention that my niece, Courtney took several of the Aidan photos. She has a great eye for photography :o)

All the other kids are waiting...

2011-04-06T10:51:00.000-07:00

I saw this on Professor M-R's door, and had to share. She has the best office door ever!

You're allowed. . .

2011-04-01T09:40:00.000-07:00

I would like to publicly thank Tim Shriver for putting into words (so eloquently) what I've wanted to say for years (I just didn't quite know how to say it):

Tim Shriver to Stephen Colbert on March 30th 2011:

I didn't say you cannot use the word: I don't want to be a cop, I want to be a teacher. you're allowed to be humiliating, degrading & hurtful. I'm allowed to petition you to at least recognize what you say & be aware of the option you have to stop....I'm asking you for...social awareness for a forgotten population. This is a campaign to save America's kids ~ Tim Shriver

Thanks for being such a powerful role model for the rest of us as we live advocacy daily for our children.

Photo by Nancy Yakimoski of Blue Sky Photography

"Where does INCLUSION work?"

2011-03-26T13:09:00.000-07:00

"In the family."

photo by Nancy Yakimoski at Blue Sky Photography

Inclusion is...

2011-03-26T11:21:00.000-07:00

Inclusion is an approach, not a program.
An attitude, not an activity.
Inclusion is not just a special education or disability issue.
Inclusion is belonging no matter what.

~Donna McGhie-Richmond, Ph.d

This is Aidan with our friend, Michelle.

Michelle loves Aidan, and Aidan loves Michelle.

Inclusion makes loving easier :o)

Including Aidan - and things that keep me up at night

2011-03-24T18:15:00.000-07:00

I recently spoke to an elementary special education class at our local university as a follow-up to the viewing of the documentary: Including Samuel. I was invited as someone at the beginning of the school journey; and, was joined by two other moms whose children had been in the system for a while. The professor had this poster outside of her office door:

I must say, I smiled wide when I saw what (and whom)she'd added to it. Funny, but when I first saw this poster, it was in the hallway at our local elementary school, and I remember thinking, "that's interesting, we should make a similar poster with Aidan on it."

Then, during our discussion, one of the guest speakers spoke about "normalcy" and not separating our children with special needs out. She is an advocate for as complete inclusion as possible. Her daughter is not pulled out of the class for most therapies - those are done at home. She spoke about how important it is to her that we NOT make our children the "poster child" for disabilities.

Hmmm. Suddenly I had to re-think everything I've been doing since Aidan was born. So far his photo has been on the side of a bus, in the paper, and he's been on television three times (twice about Music Therapy, once for the Telus Flight with Santa). I post his photo all over our flickr family page, and have joined three flickr groups about Down syndrome, and started one myself called Down syndrome in the Family. Not to mention blogging about Aidan and Down syndrome in the 31 for 21 challenge, and posting on Facebook about Spread the Word to End the Word campaign. I even went so far as to have my on-line friend Erin make this poster for me:

Why have I done all this?
For advocacy, ironically.
To show the world how much we love Aidan; and to show the world just how amazing and capable he is.

Now, have I been inadvertently achieving the opposite of what I set out to do? Have I been moving Aidan backwards instead of forwards? Have I kept Aidan in the box on the shelf labeled "disabled?" Have I opened the doors for inclusion to happen naturally and effectively, or have I placed hurdles in Aidan's path?

I have to keep thinking about this. It's good to get different perspectives, and it's good to question ourselves sometimes.

At any rate, these are the thoughts that keep me up at night.

3 Little Billy Goats

2011-03-17T22:03:00.000-07:00

Thinking About Inclusion and Paradigm Shifts

2011-03-09T11:47:00.000-08:00

I was honoured to be one of the panelists at the screening of the incredible documentary, Including Samuel at the University. There were four of us sharing our responses to the film and our hopes and fears about inclusion for our children. I was invited because Aidan is just beginning his journey into the system.

Photo courtesy, Dan Habib: http://www.includingsamuel.com/home.aspx

What stood out for me the most was the answer to the question, "Where does inclusion work?"
The answer, drumroll please.....
"In the family."
Whole heartedly.
Proudly.
Rewardingly.
As I watched the film I kept thinking of my father in the 1970's and how he wasn't included. He was sent off to a hospital where he wore his pajamas all day while watching television in the sitting room. Our family watched as the paradigm shifted. As patients began to be dressed for their day. Still watching television, but given some dignity while doing so.

Things changed at the hospital, so my dad's entire ward was re-located to an institution. The Funny Farm - people in our town called it. A different ward than that for the insane or mentally challenged: this ward was a chronic-care ward which housed mostly very old people. Dad was the youngest one there, at first, until a teenager who had been in a car accident and was paralyzed, and speechless was admitted and shared a room with him.

Over time, as the paradigm continued to shift, people in the chronic-care ward were taken out into the community to do "regular" things. Bowl, with a trough-like plank on their knees to push the bowling ball down the alley from their wheelchair. Shop at the mall, and eat in the food court. They were even taken on the Chi-Cheemaun ferry cruise from Owen Sound, up to it's summer spot in Tobermory.

For those outings, I skipped school and went along too. It was fiercely important to me. You see, Dad had been a Captain and Pilot on the grain ships before his illness stopped him in his tracks. So, the trip on the ferry was very important to us.

Photo Courtesy: http://www.flickr.com/photos/bobolink/4764169129/

I would go along as a helper, and during one of the earlier trips I pushed my dad's wheelchair to the bough of the ferry so he could look out the window and enjoy the scenery of Georgian Bay. A group of "typical" people were sitting nearby, and when they saw us coming, they looked disgusted; like we were going to ruin their ferry-cruise experience. They ended up moving seats to be further away from us.

I remember being so hurt by that. I didn't know how to handle it, I just felt it like I'd been kicked in the stomach.

Fast forward fifteen years. The trips continued - but I was living out West at the time; so I didn't go. Mom always told me about it, and sent photos. On one occassion, the Captain of the ferry invited my Dad up to the wheelhouse to visit with him. It took several workers to lift dad up the narrow stairs; but they did it.

That's something else I'm fiercely proud of. That times change. That attitudes change. That individuals like my dad were finally given a fair shake and the respect they deserved.

I've got more to say on the Including Samuel documentary and Aidan, but that will have to wait for another post.

Change

2011-03-02T15:38:00.000-08:00

Your family is perfect.
Take heart that more and more people are becoming aware.
Change is slow, but so worth educating for.

I wrote that on Bethany's blog, and realized it's what I needed to hear too!
I send that message out to everyone who is spreading the word to raise awareness about how much the "R" word hurts us. People are hearing the message; it's making people think - which is always a good thing.

Of Paints and Brushes and Owls and Stuff

2011-02-07T10:22:00.000-08:00

This post was also published on Another Kick at the [Paint] Can. Why? Because I'm a mom, and I like to multitask.... a lot!
When I started painting, it was for myself. I wanted to try to capture the images that floated through my mind; and I wanted to play with acrylics, and learn how to use that medium. When I looked at works of art by illustrators like Rose Cowles, something in my heart would long to do that too.

So, I bought my first paint set with my Christmas money. I've probably already mentioned that in an earlier post, but it really was a pivotal moment for me. I'd been aching to get my hands on the paint, the canvas, the brushes, the ideas, for over a year. When the time came to jump in, I was ready.

Then came another pivotal moment: when I realized that I could make my paintings into cards and sell them to help raise awareness and funds for our local Down syndrome society. I approached the Board, and asked if I could. The Board was on board (awful pun intended), and so The Little Gull Project began.

To say I am very proud of The Little Gull is an understatement.

I'm very proud. But, I'm also quite aware that my paintings are at the experimental stage. There are a lot of wonderful artists out there, like Diane Duda, and I'm happy to learn from their creations. Dianne uses text in many of her paintings, and that inspired me to try it too. Take this little guy, for example:

This painting is an experimental project on paper. What do I like about this painting? I'm pretty happy with the text collaged onto the owl's belly. I think I could have done better with the bleeding hearts. I should have used canvas instead of paper, as the paper buckled from the thickness of the paint. I'm not happy with the background because of that buckling. I'm thinking a different colour for the sky might be a better plan. I'm tempted to cut the owl and tree out, and collage it onto a canvas, or wooden block (something I have yet to try).

If you have any advice on how to make this owl better - please leave a message. I'm happy to learn! I'm in need of a mentor, or two, or ten....

The Little Gull has a lot of room to grow, and I'm okay with that.

Where Poetry and Tae-Kwan-Do Collide

2011-01-12T15:31:00.000-08:00

Aidan gets a lot of air time on the old blog....maybe because he's the smallest, and I spend the most time with him (the big boys are at school). Perhaps it's because he has Down syndrome and it seems right to write/advocate/share/chronicle, etc., about Down syndrome on the blogosphere. I don't think the big billy goats mind that they aren't written about as much.

But, every so often an anecdote comes to mind about the other boys, and I want to put it down so I remember.

So....
This is a story about the middle-est billy goat,
Liam.
Age 9.
And poetry.
Oh, and a little tae-kwan-do too.

Liam is a fidgety boy. He bounces, spins, fidgets, plays drums on his knees, does strange things with his cheeks, and we love him whole heartedly.

We put him in tae-kwan-do to try to learn some self-discipline and self-control. Also for some physical activitiy which he was craving.

He's doing great.

At school, he is fidgety, and not getting down to work. I went in to talk to his teacher. She explained that they were writing two word poems.
She said that he right away wanted to do his poem on tae-kwan-do.
No surprise there.
His poem was as expected, about a dojang, white dobak, high kicks....
and the last line of his poem was difficult to read,
but it looked like: "bar fights."

Bar fights?

Hmmmn. His teacher looked at me.
I looked at her.
We chuckled and shrugged.
I was thinking did he get that from Bugs Bunny?

Later, in the car (on the way to tae-kwan-do), I remembered his poem, and told him I thought it was terrific...but that I couldn't quite read the last line. How did it go, again?

Bare foot.

Oh, right. :o)

Little Operation

2011-01-10T17:34:00.000-08:00

Today we took Aidan to the hospital for minor surgery. He got tubes put in his ears. The hope is that he will hear better and be able to reproduce speech sounds more accurately.

If this doesn't help, then we're pretty sure there's another issue. Perhaps apraxia? Time will tell.

He wasn't very impressed with not eating or drinking this morning. He made his way to the Cheerio cupboard 8 times, only to be turned away empty handed. Poor pumpkin.

He was polite with the nurses, up until a point. The point being when they held onto his arm or foot firmly to put numbing cream on the back of his hand and a monitor on his big toe. He yelled out, "ooooo," and "owie." It would have broken my heart if it wasn't so darn cute.

I was impressed that they let me take him right into the operating room, and wait with him until the anaesthetic knocked him out. I held him and sang "The Owl and the Pussycat" for old-times sake. Just like I did 4 years ago when he went under for heart surgery. Ah, good times.

Aidan plays a Christmas Carol

2011-01-06T13:23:00.001-08:00

Make an on-line slide show at www.OneTrueMedia.com

Holidays are Over, sigh.

2011-01-06T13:01:00.000-08:00

Flight Pass to Fun!

2010-12-15T20:05:00.000-08:00

We got our Flight Pass to Fun!

We waited at the aviation centre for Santa to arrive.

Oh, what a big beard you have, Santa!

"I like these people!"

Phew. I'm tired, are you tired?

A Ride with Santa in his Private Jet....

2010-12-02T20:22:00.000-08:00

Our social worker called today to ask if we would like to go for a ride with Santa in his private jet (Telus corporation's jet). We're very excited about it - and can't wait to see Aidan's face when he meets Santa. The big boys are thrilled too; they can't wait to dress up in their dressy clothes.

I love opportunities like this. A chance to share Aidan with the community. A chance to celebrate together. A chance for the big boys to be so very proud of their little brother.

I love Santa Claus. I always have, and I always will.

The thinking tree

2010-11-29T09:10:00.000-08:00

When I was teaching I had a little guy in my kindergarten class who said his mom was putting up the tree that day, so that when he got home, it would be finished and waiting for him.

Downhearted. That's how I felt, because I knew the mom was wanting everything to be perfect. Just so. But, in her quest for perfection, what message was her little boy getting?

I can't imagine not having my boys in on the fun. It's the process that they'll remember when they're older. Not the final product. They'll take out the ornaments year after year and say, "oh, I remember this one." And yes, an ornament was dropped and broken....but we got out the glue and put it back together. Because that's what we do in our family....we don't throw away what isn't perfect. The imperfect things still matter to us.

Costume-ability

2010-11-01T07:31:00.000-07:00

The boys had a lovely Halloween. We went out and about with a family that moved away this summer....but they came back for the night to let the boys trick-or-treat in their old neighbourhood.

Aidan's first experience with going door-to-door was adorable. The first house we went to, he walked in, took his hat off and sat in their big comfy chair. He didn't quite understand why we left so quickly, but then he got the hang of it (and I did too....I held him back.)

I hope everyone enjoyed their Halloween!

Aidan and the Great Pumpkin Patch

2010-10-26T16:40:00.000-07:00

Aidan's Preschool class went for a trip to a local farm to pick a pumpkin out of the pumpkin patch. He was quite the trooper...a lot of walking, a lot waiting, and a very bumpy hayride. The woman in the third photo is Aidan's integrated service worker. She's amazing, warm and lovely, and all the kids in the preschool love her.

A Whole Whack of Love

2010-10-16T23:56:00.000-07:00

That's my cousin Sharon. I used to be the little kid listening to her tell stories to the adults about teaching on a First Nations Reserve. I probably looked like I wasn't listening, because I was playing with Barbie Dolls, or colouring; but I was. I grew up wanting to be like Sharon.

In '93 I moved out to Saskatchewan and got to know Sharon from an adult's point of view. Nothing really changed, I still looked up to her. I wish I could be a fly on her classroom wall, 'cause I think I could learn a whole whack about teaching from her.

See the guy holding Aidan in the photo below? He was only two when I moved to Saskatchwan. I lived with Sharon for a couple of months helping to look after her kids while the school year ended. They lived in the middle of the woods, and I used to be afraid that a bear would eat him.

I am so proud of Daniel. When he holds Aidan, you can see the kind of person he is. Caring. Kind. Sweet. One of the good ones.

Ring the Bell, Aidan!

2010-10-16T23:40:00.000-07:00

When I go to work at the preschool (it's a co-op), we have to go in extra early to help clean and set up. On those days, Aidan gets to be the special helper. One of the duties that goes along with that is to ring the school bell when it's time for the rest of the children to come in.

I was so proud of him! He is really transitioning well into the program and new routine. I wish I had this on video. I also wish I had him on video as we walked to the preschool. I gave him his little cloth library bag to carry, and he giggled all the way down the sidewalk - swinging his library bag, holding my hand, and incredibly happy.

I love him so much, my heart is bursting with it :o)

Mon petite billy goat

2010-09-28T23:54:00.000-07:00

My goodness...I've been a bad, bad blogger. So much going on, but not writing it down.

Okay, here is a little glimpse at a tiny scene of the day...

Today at preschool Aidan followed the arrival procedure without a fight. We waited outside until the duty kids rang the bells. Then, we entered the little red schoolhouse, hung his bag and coat up. Changed shoes, and washed hands. Then he put his name on the fridge door (without being guided to do so) before proceeding to play

Today was day 5, and during all of our previous visits I have had to hold him back from running in to play so that he could learn the routine. Previously he cried, twisted, turned, and made me feel like an evil, bad, horrible troll that wasn't letting him cross the bridge to get to the other side.

Today things clicked. I was so proud of him.

Today I was a very happy troll.

The Little Gull Project

2010-09-04T10:00:00.000-07:00

This has been my crazy calling over the last few months. Painting, making art cards, approaching business to sell art cards, starting The Little Gull blog, working with an amazing art printer - Scott at Art Ink Print, planning with the local Down Syndrome Society, signing up for an ETSY account, making signage for stores.

I couldn't be happier. Really. The Little Gull feeds my soul and makes me feel I am a part of something bigger than just me. It's a good feeling.

I still get nervous approaching businesses, but so far they have been very kind. One bookstore owner told me she was going out of art cards, that they simply didn't have room for them. But, with regards to The Little Gull Project she said, "But this is different. Let's go for it."

Aidan's Sand Box

2010-08-25T11:25:00.001-07:00

Going on a whale hunt...

2010-08-15T21:17:00.000-07:00

A friend told me there's a grey whale near the marina and that we don't have to pay a gazillion dollars to go on a whale watching tour. I have yet to meet a whale, and I've always wanted to, so tomorrow...

We're going on a whale hunt.
Going on a whale hunt.
But we're not afraid.
No, we're not afraid.

Actually, James and I tried once already to see it. We had a babysitter in, and drove down to the marina, but the fog came in. Couldn't spot a grey whale in the fog. We listened hard for a while, but didn't have patience to wait for long. Plus, it was a little creepy. We couldn't see five feet ahead of us, and the bells were clanging on the boats. AND, there were horror movie scenes playing through my head....so we toddled off to the pub.

But tomorrow, it will be me and the boys, and hopefully a whale. No fog, fingers crossed. We have staying power, don't we boys?

Saskatoon

2010-08-12T14:32:00.000-07:00

Saskatoon, city of bridges. See the grey concrete bridge in the distance? That's the University Bridge. I used to walk it in the early mornings to go to campus. Let me tell you, there were some freezing mornings; and haunting too. The wind would whistle through the open spaces and make you crazy by the time you got to the other side.

View from the potty

2010-08-11T00:43:00.000-07:00

We're trying, really we are. . . to take Aidan to the potty more regularly. We've had a few successful moments, like two days ago when he pooped and clapped and cheered for himself. Then yesterday he sat on the potty with his diaper still on and pooped. Clapped and cheered still. I guess you couldn't say he was wrong, but...not as I expected.

Today I watched as he sat on the potty, then picked up his pants and put them on. Then he stopped. Looked down at the floor and saw his diaper. Took his pants back off, and tried to put his diaper on.

Things are clicking, I went out and bought pullups tonight.

3 Billy Goats

2010-08-05T23:25:00.000-07:00

We are enjoying the summer, thoroughly and without hesitation. Our motto is, "see a park, stop and play." So, after Aidan's physio yesterday we hung out at a very cool park down by the ocean. The boys had such fun running, climbing and zipping.... Luckily I got them to slow down enough to take a couple of photos of them together. I can't believe how big they are getting! Aidan looks so grown up with his big brothers. Especially now that he's wearing his glasses.

And...things seem to be clicking for him. While grocery shopping he signed talk, talk, talk, talk, until I realized he was trying to tell me something. Then, he signed cookie. I was so happy I squealed and jumped up and down. This is the first time he's done that to get my attention...it's usually the other way around. I sign "talk to me" to prompt him, then he copies/answers my query.

Today, he put one of his socks on BY HIMSELF! He worked at it for such a long time, but he didn't get frustrated - and he looked so very proud of himself. Another big hip-hip hooray (from me) that shook the house and most likely woke the neighbourhood.

It's all good.

Glasses for a Day

2010-08-03T07:58:00.000-07:00

Finally, finally, finally. Aidan wore his glasses while watching Elmo. Aidan wore his glasses while eating. Aidan wore his glasses while sitting on the deck enjoying the flowers. Aidan wore his glasses.

Then. Mommy. Stepped. On. Them.

Oh the shame.

Going to make a visit with the optical dispensary to see if they can be fixed...and will order a second pair. Maybe in neon yellow so they don't blend in with the hardwood. Good idea, no?

Fortunate

2010-07-16T14:44:00.000-07:00

We're fortunate. I know that. I'm grateful. Family is the most important thing.

Under a Prairie Sky

2010-07-12T14:30:00.000-07:00

We're in Saskatchewan enjoying the big sky and bright sun. Aidan is thrilled to be in the large house with the lovely back yard. The big boys spent a couple of hours this morning pretending they were Sherlock Holmes and Doctor Watson. They looked for clues, interviewed people, and solved crimes. It was nice to see them getting along and using their imaginations.

I brought my paints with me and have been setting up at the kitchen table after the boys go to bed. It's nice to have Baba's critical eye helping me make the big decisions. One painting has been painted over so many times the paint is thicker than the canvas.

I'll try to post some photos soon.

A few paintings

2010-07-01T19:25:00.000-07:00

Boat for Hope

2010-06-07T09:29:00.000-07:00

This weekend we transformed ourselves into pirates for the annual Variety charity called Boat for Hope.

People donate time, energy and their boats to take people with disabilities (and their families) for a boating adventure. This year we got to ride in a Whale Watching Boat. Our captain gave up a day of work to volunteer his time for this amazing charity. There were whales out...and he was missing it...but he didn't care. He took his two children along, and together they experienced the joy of coming together as a community for a great cause.

I told them how very important the charity was to our family. How Variety Heart in Winnipeg helped us to get to Edmonton to get Aidan's heart fixed when he was only five months old. How we'll always be grateful.

When we docked and were leaving. Our Captain (wish I knew his name) gave Aidan a little pat on the shoulder and said, "take care of your mom, big guy."

I wanted to cry. I guess I have a soft spot for pirates.

Hot off the Easel - The Knight's Gift

2010-06-03T09:11:00.000-07:00

I think this little painting is finished, but after I live with it for a few days I might add/change some things.

For now, I'm quite proud of it! I was inspired by a little clearing near where I live. I stopped the vehicle on the roadside and took photos. My lads thought I'd flipped my lid, but that seems to be my new normal.

For some reason, I thought of a knight, a horse, and an apple.

Once I got going, I realized the big tree in the middle of the clearing would take away from the characters, so I'm saving that for another painting.

Sneaky plans and clever tricks...

2010-05-30T20:07:00.000-07:00

I've been painting with acrylics since Christmas. Have gifted six paintings to friends, and friends of friends. I wandered into the local children's bookstore with Aidan one day....just so happened to have the Owl and Pussycat with me, and asked if they would be interested in selling them.

The first thing the owner asked was if I had a card.

Added that to the to-do list.

I took his card and gave him my e-mail address. Thanked him. Left. Didn't really think I'd hear back.

One week later owner of said store e-mailed to say they would love to sell them. The nursery-rhyme-inspired ones.

Not a rejection.

Yay!

To-do list just got bigger.

Lovin' that music

2010-05-09T20:54:00.000-07:00

Last month we worked at a booth at the mall to raise awareness about our local Down syndrome society. There was live music, and Aidan grooved out:

Make an on-line slideshow at www.OneTrueMedia.com

My only regret is that I talked during it...oh well.

Off the easel and pass the baby

2010-05-02T13:57:00.000-07:00

I've been working on a painting for my friend's baby....see the cutie I got to cuddle?

That's Reese. The family in the yellow submarine is Reese's family:

Reese is one lucky baby to have such wonderful big sisters and amazing parents to boot. It was a thoroughly enjoyable project...but now my easel is empty...

Life is good...except when it's not

2010-04-23T22:56:00.000-07:00

Very emotional tonight thinking of a little girl I've never met. Carly, age 8 passed away unexpectedly today. Many of us in the Down syndrome community are heavy hearted tonight as we think about Carly's family.

It doesn't seem right,
it doesn't seem fair,
and it doesn't make sense.

This heaviness of grief,
should make time stop.
Should make the world hush...

but it never does,
and it never will,
life keeps moving all around us.

c.

Playdate...best part of our week

2010-04-17T08:02:00.000-07:00

Good fortune to have a playdate yesterday at an acreage near the school. It was a beautiful day, the kids all got along, we held three-day-old chicks, fed an old miniature horse, caught frogs by the pond, jumped on the trampoline, hit homeruns, and spun around in the fresh air. Truly blessed to have met such nice families here.... and for Aidan, even the lane was exciting!

Little Celebrity

2010-04-13T09:52:00.000-07:00

So, Aidan was on the TV not once, but twice this week. Both times for the Music Therapy program. The Ronald McDonald House Charity just donated $30000 to build a multi-sensory room for children with critical illnesses to have a studio to relax in.

While Aidan and his friend Sarah are not critically ill (thank goodness, touch wood...), Johanne asked that they be at the media event to help accept the cheque. Aidan and Sarah will be able to use the room if they are having a bad day or simply needing a calming space (the therapy room is quite stimulating with all of the instruments). I think she chose our kids as opposed to someone who is terminally ill to go on camera as it would be less stressful for them. Everybody is different, but I know that when we were in that horrible time of waiting for heart surgery, I would have found the act of speaking to the media too emotionally charged to handle. My nerves were raw...

Thankfully, thankfully, we've come through the other side of that stress and now can experience the joy of putting it all behind us.

Aidan is a Star! Indeed it's true - I just watched him on TV!

2010-04-08T23:00:00.000-07:00

Last week Johanne (Aidan's music therapist) phoned to ask if he could be filmed for a news report the next day. Short notice because it was being done in response to proposed funding cutbacks of the Success by 6 program in our province. Of course, I said yes - with one regret that I didn't have time to get my hair cut (vanity, thy name is Carol) .

Anyhow, just before filming, the station discovered that the funding would not be cut after all. Great news, but now they needed to change "the story." It became a general piece about the benefits of music therapy.

Aidan was a star, indeed he was. He was not shy in front of the camera, he played the instruments with gusto, he cheered, giggled, clapped, and had fun. I was so proud of him.

Johanne said something beautiful in the interview (I'll try to paraphrase): "we are trying to get the gap between the typical child and the child with challenges as small as possible to make it easier when they start kindergarten." I love Johanne - I have never met such a genuinely positive person in my life. Is it selfish of me to think of Aidan's music therapy as "OUR" music therapy? I hope not because I think I get as much out of it as he does.

Another Obsession, Another Blog

2010-04-03T11:40:00.000-07:00

Something in me doesn't like to mix my eclectic interests in this blog; 3 Little Billy Goats is my blog about life with my three boys, with a great sprinkling about my youngest billy goat and Down syndrome.

I like my boys, so I like to write about them. I was inspired to start a family blog after reading Becca`s about her life with Sammi, and Michelle`s about her life with Kayla. Then my blog reading snowballed and I started to follow Amber`s, Bethany`s, and Sarah`s. My blog list grew from there. Anyway, what was I starting to talk about....oh yes, my tendency to NOT want to write about myself in their space as much. Hence, the numerous blogs I've started.

The "writing" blog: Writes 4 Cookies
The "technology in education" blog: Tea for Web 2.0
Dewey the Dog Blog about a puppet`s travels from Manitoba to British Columbia.
And, (phew), Baby Board Books, which was the first blog I created. It was for my Library School assignment.

My latest interest has been in painting...so I started Another Kick at the [Paint] Can. While my lads definitely come into the painting picture:

I still feel a need to have a dedicated blog to record my journey with paint brush. Sort of like Virginia Woolf`s A Room of One`s Own, except that my room is a virtual one. I'm not sure what that says about me, but there it is. The truth about my blogging compulsion.

And yes, I understand that this post has not been ``all about the lads.`` I embrace irony.

My Favourite Day!

2010-03-17T10:40:00.000-07:00

Happy St. Patrick's Day everyone!

As usual, the lads were very excited about St. Patrick's Day...you may remember last year the leprechaun paid us a visit and MADE us make his favourite Irish Stew and Soda Bread for lunch before he would disclose the clues to find the treasure (naughty leprechaun, mom was very tired!).

This year we were undecided about how to prepare for the leprechaun. Should I have stewing beef on hand? Flour in the pantry? Should we make leprechaun traps, or a leprechaun house?

In the end, we decided that we wanted to be friendly, so no traps were set. Instead, we made a little sailboat (for West Coast leprechauns) and put a white flag on it to show we meant no harm. We left it outside next to the little yew tree.

You won't believe it, but he came in the middle of the night - took the boat for a little sail, used our coats, had a bath in our tub to warm up after the chilly evening adventure, then left us a treasure of thanks beside the cheddar in the fridge. He was indeed a friendly West Coast leprechaun.

Enjoy the photos :O)

Anecdotes

2010-03-15T00:23:00.000-07:00

Just wanted to share these anecdotes that made me giggle:

Liam had the toy stethescope, and was listening for Kieran's heartbeat. His eyes got big and he shouted, "I can't hear your heart, Kieran, I think that means you must be dead!" All I could think of was, 'work on your bedside manner, kiddo!'

I took the boys to see Alvin and the Chipmunks today - it was Aidan's first movie - he was so excited he clapped (with GREAT FORCE) through most of it!

Yesterday I took them to the ocean for our 14 Days of Drawing Challenge. The scenery was exquisite - there were 12 sailboats in the bay, driftwood logs piled into a tipi shape, great cloud formations, flowering trees....and what did Liam draw? McDonalds. Mind you, it did have a fire escape... Kieran gave him high praise. When I looked to see what Kieran had drawn....it was an opera singer. Go figure.

I made the pledge, did you?

2010-03-03T12:00:00.001-08:00

Putting the Child First

2010-03-01T01:00:00.000-08:00

I'm wondering if anyone has seen a poster about inclusive language with regards to putting the child first (before a disability). I want to post one in the staffroom at the school Aidan will attend in a year and a half. The kindergarten teacher recently said to me, "I had a Down's student once, he was very stubborn." My spidey senses went all haywire, and I want to let the staff know that language is important... :o)

Also, last night I attended my first ever Down Syndrome Society AGM and joined the Board. I want to help in areas of education and advocacy, and the child-first inclusive-language angle was the first thing I thought of.

Another Kick at the [Paint] Can

2010-02-17T11:17:00.000-08:00

When I was little I used to dream of having an art studio in my house. One similar to the sunroom at my Grandmother's where the piano sat, and Grandpa's medical supplies rested in a white cupboard long after he passed away. A quiet space filled with light that inspired the imagination. That dream morphed over the years into a desire for a writing space in a small cottage, a boathouse, or even just a boat. The bottom line of that dream was to have a space of my own to create in. Last year I enjoyed a spurt of creativity where I started writing a novel that I felt was truly going places. I wrote about 14 chapters in various locations - the kitchen table, the bed, the car when Aidan was sleeping in the back, once even at the gym. It felt amazing - like I was becoming a real writer. Then summer holidays came, and the big boys were home 24/7, and I lost momentum and stopped writing. Now my creative energy has turned back to the canvas and I'm taking another kick at the paint can.

In high school I took all the art classes offered. I really wasn't as good as the others in my class, but I kept with it because it felt good, meditative almost, to go into the art room and create stuff. I watched as my friend Hethr (yes, she spells her name that way) did beautifully detailed work that I didn't have the patience for. Or Andy who did the most amazing shading, making his sketches jumped off the page. Andy's talents were so far above me that I went out and bought him a set of good pencils and left them in his locker as a gift from an anonymous donor (he was putting a portfolio together at the time to get into an art program in college). My art teacher said my work was too cutesy, and that I needed to expand into more realistic stuff. Still, she gave me an award at my Grade 13 graduation for creative arts. I didn't think I deserved it for my talent, but definitely for my appreciation of it!

During my first year at Trent University I painted t-shirts for my friends. Little cartoon-like paintings of them with speech bubbles containing their catch phrase of the month. I made cards too, and gave them away. But I never thought of doing it as a career.

At the end of that university year I sat in my friend's living room and we talked about what the heck we were going to do for summer jobs. That's when Glenn piped up and said, "you and Ally should paint t-shirts and sell them." Then Johnny (whose real name was Steve) said, "set up shop at the Peterborough Marina because there's a lot of foot traffic and your work will get noticed." Ally and I couldn't think of anything better to do with our summer, so we started planning. We applied for a Young Entrepreneur's loan through the royal bank. Found a paint supplier (Marylou, my Mom's kind and generous boss at the wool shop) who let us buy fabric paint at cost. We sketched, doodled, and dreamed, then we approached the new managers at the marina about setting up shop there. Rick and Mary were very supportive of our ideas. We pulled a picnic table to the edge of the walkway, and got to work. Rick and Mary even gave us other jobs to help supplement our income (we were slow painters). I cleaned houseboats, public washrooms and showers, rented paddleboats, and worked a hotdog and balloon stand on Festival of Lights nights. It was a good summer in many ways. I got a great tan (I usually burn) and lost weight (from biking to and from work with Ally riding double on the back carrying a tackle box full of paints). I talked to a lot of interesting people, both locals and tourists who were enjoying the area (and appreciating the clean showers). And, I almost quit school to become a crew member on a boat called The Ivanhoe (this was unknown to the handsome owner of the boat, but was a delicious little side-dream alternative to finishing my English degree).

That summer at the marina ended over twenty years ago. I went on to work at an insurance office uploading automobile policies and browsing the shelves at the local library on my lunch hours for books of poetry to engage my creative brain. Ally graduated the next year, and we never kept in touch. I believe she moved back to Toronto, but I have no idea if she continued on with her artistic streak. I like to think that she did. I also hope she looks back on that summer with a little fondness for the adventure we took on.

For the past year I have been longing to experiment with Acrylics. My mother gave me $50 for Christmas, and I knew exactly what I wanted. A paint set. James, the boys and I took a trip to the art supply store that I liked, and I found a basic kit that came in a plain black box. The first thing I did was paint a little self-portrait (cartoon style), on the front:

The first picture I painted was of my Grandmother's cottage on Lake Huron. I've tried drawing it repeatedly over the years, but can never quite capture it right. This was my first attempt:

I realized that drawing the perspective on the cottage is very difficult...how to create depth in the center showing that there was a flagstone patio? And trees - good God, how does one paint trees so they don't look like big green triangles?

Second attempt:

I liked the trees, but not the cottage as much. The rock garden was still horrible, I needed to work on that.

Third attempt:

I used more black to give definition, and I liked the effect, but not on the tire tracks on the grass. That just didn't turn out at all. The garden itself was much better.

I've put the cottage aside now - I like different bits from each piece, and maybe one day I'll get all of those pieces to fit together.

My next project was a painting of my favourite poem, The Owl and the Pussycat:

There are many things I like about this painting - the bold colours, the outlining, the subject, the pea-green boat, the tree and the daisies. What I don't like, and need to rework when I get the time is the fan that the cat is holding. James says it looks like an oversized paw, and I have to agree. I think I'll repaint it yellow to match her hat.

Then I made an attempt at a miniature....the lighthouse is one of my favourite images, so it seemed right to attempt it here:

My current project is an attempt to learn from Tom Thomson, who just so happens to be from my hometown area in Ontario. This is how the painting is at the beginning of the process:

I'm happy with the trees along the far bank, but I'm really not happy with the sky or the canoe. Thomson's colours are so interesting, I have a difficult time trusting myself to do what he did. In the end, I think this painting will need to be a marriage of his style and mine. I might even make the canoe red, as homage to my husband's old Clipper Canoe that brought us together in the first place (but that's a whole other story for another time).

Now, I"ve tweaked my dream of being an artist or a writer. Life shouldn't be about either/or. I'm more than a black and white caricature, I realize that now. I've finally decided on a dream that makes me happy. My dream is this: to live an interesting life. That is a big umbrella to fit under, and it pretty much covers any whim I follow. I'm hopeful that it will continue to lead me and my family towards a happy life.

Olympic Grey Areas

2010-02-16T14:40:00.000-08:00

I've been thinking a lot about the Olympics and how I feel about them. If you read Olympics for Poets, you will remember that I was contemplating why we privilege sports over other activities - I wondered if we ever put that kind of effort into celebrating our poets, surgeons, or teachers.

It's not that I'm against the Olympics - it's just that my mind looks at grey areas of life - not the black and white. So, while I can say, "yes the Olympics seem to be about more than sports - it's an opportunity to put our best foot forward. To celebrate our national identity, while at the same time honouring all of the other nations involved. The Olympics are a wonderful event that bring together our musicians, poets, fashion designers, artists, reporters and photo journalists, etc. and blah, blah, blah..."I still wonder at how the Province of British Columbia can bounce back from such enormous output of cash. Will we be feeling the economic repercussions for years to come? Our schools and classrooms are pretty much stripped down to the bare bones (music programs, teacher-librarian's, reading specialists....gone. I notice this lack of richness when I compare the schools in Manitoba to those in BC.)

Only time will tell what the outcome will be. For now, I'll try to enjoy the Olympics for what they are, and push these questions to the back of my mind. I'll try to feel the joy through the eyes of my boys, and the kids at their school.

Happy Valentine's 2010 to the Blogosphere!

2010-02-14T21:14:00.001-08:00

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The Owl and the Pussycat

2010-02-11T10:05:00.000-08:00

Have I ever told you how much the poem, "The Owl and the Pussycat" means to me?

No? Really? Okay then, here goes...

I memorized this poem when the big boys were babies, and I'd rock them and I'd whisper it to them as they fell asleep. I love the pea-green boat (did I mention my father was a sailor?). I love the owl looking at the stars, playing a small guitar and singing about his love for the pussycat (I taught myself how to play guitar very badly, but it still was fun). I love the idea of the owl and the pussycat sailing away for a year and a day to the land where the bong tree grows (some days I wish I could do that too). And I love that at the end of the poem, the unlikely couple danced by the light of the moon (I have yet to do that).

Then Aidan came along, and the poem helped me cope through the first five terrifying months of his life. The times when the doctors had us thinking he had liver failure - and they put us on a transplant ward overlooking the crematoriam. Or when they said he probably had necrotizing entero colitis, and he was put in the NICU ward where we had to watch families grieving when their tiny babies did not make it. And then there was the news that he had three holes in his heart, and that we would have to watch him slowly go into heart failure before his surgery could be done.

I started whispering or singing the poem softly to him during our hospital stays, heart clinic visits, and while he was recovering from his surgery. When they poked him repeatedly (and on several occasions) trying to find a vein, I pulled the poem out from deep inside me and it gave me strength to hold him.

The other thing that helped me tremendously had nothing to do with the poem exactly. Or maybe it does. Anyhow, I was sitting in the emergency room, completely stressed out. Aidan in my arms while doctors came and went and scratched out one anothers orders and I couldn't think straight, and I couldn't breath deep enough ...so I finally closed my eyes and imagined my deceased family members standing behind me with their hands on my shoulders. My two grandmothers, my grandfathers, my father, one by one putting their hands on my shoulder. Each one giving me strength.

And I felt immediately calm again.

Olympics for poets?

2010-02-01T10:16:00.000-08:00

The Olympics are coming, and all the expense and effort that goes into it made me wonder why we privilege sports over everything else (including education funding, it seems! Aarghh, I'd better not get started.)

Still though, when was the last time that sort of effort was made to show off our nation's poets?
Our top surgeons?
Our greatest Kindergarten teachers?
Our Scrabble champions?

Is there much of a difference between Scrabble and Bob Sledding? Do they not both require specialized skills? (please note, this is meant to be a ligth-heart questioning, nothing more.)

A while ago I saw a battered truck in the library parking lot with a sign on it that read: "2010 Olympics, a disgraceful waste of your tax dollars." Someone I know and respect very well said that people like that would complain about anything. She also remarked that the money that is spent on the Olympics would not be used for other causes anyway. But, I'm not so sure. I don't know how these things work, and life is too busy to go there right now anyway.

So, the Olympics are coming. I think I'll go write a poem about it. :o)

How did I get so lucky?

2010-01-22T08:06:00.000-08:00

That's what I want to know. I mean look at my three lads - they're adorable if I do say so myself (and I say so . . . perhaps because they slept in this morning and gave me an extra few moments to think).

Back in my mid twenties I lived with my cousin in the woods in Northern Saskatchewan. She's a teacher, and her husband was a Band Counsellor at the time - helping to build a health center at the Reserve. They needed a nanny to look after their two little ones until the summer holidays. I remember Sharon looking at Bethany and Daniel and a look of pure love and wonder would be on her face. I knew I loved her kids, Bethany and Daniel were amazing little people, who have grown to be amazing young adults, but I didn't feel the depth of wonder that Sharon felt.

I feel it now. I look at the faces of my boys in this picture: I glimpse a bit of the teenager that Liam will grow into. I glimpse Aidan in his school years, with lots of love and support from his peers. I see that Kieran is finding his way, and will continue to grow and become an exceptional young man - who might look back at this picture and wonder why he gave a goofy grin. And I'll tell him that it was a stage he was going through.

And finally, I see James and me behind them every step of the way.

Thanks to my friend Nancy who gifted us with the amazing family portrait at our local Down syndrome society Christmas party.

I can't stop thinking...

2010-01-18T07:29:00.000-08:00

I can't stop thinking about Haiti. My mind goes there as I'm making supper and I think, man, we're lucky to have food right now. I'm washing the dishes, and I wonder if Haiti has clean drinking water. I spill coffee down the front of my shirt in the cafe and I tell myself I've got nothing to complain about. I think of Haiti. Of the devastation, and all the people trying to make sense of their lives and their new situations - all the while in varying states of shock and grief.

I also think of one person in Haiti right now: Jesse. Our cousin. He works there for the UN - and thankfully was not in the headquarters when the earthquake happened. He knew something was seriously wrong when he was driving home from work and the road collapsed in front of him.

We heard from his parents that he was okay. A few days later we got an e-mail from him. He spent over 40 hours awake in the beginning - 31 of them helping in a triage unit. Now he's helping with the bodies.

I e-mailed him: "you're doing heroes work.... Stay well, it can't be easy".

But I don't know. I can't imagine the trauma. I can't imagine how life will ever be the same after living through something like this. I just pray that he'll be okay. And I pray that somewhere in this awful horribleness of destruction, that all of the survivors will be okay. That they'll have strength and support to rebuild and keep living.

(Jesse kindly gave me permission to post about his experience. He also set me straight about my facts...amazing how the facts get skewed as the story moves from one person to the next.)

Glasses Day

2010-01-09T21:10:00.001-08:00

Well, Kieran got his new glasses today, and he's so proud. They look a little big in this photo - but in real life they look better.

He showed us how he cleans them (which he did about 20 times already), and how neatly they fit into his flip-top glasses case. James and I were quite surprised at how strong the prescription is. Poor kid, we had no idea.

We took Aidan with us as we wanted him to get interested in putting glasses on his face. I have been carrying an order for his glasses around in my purse for over a month. Every time we are near a glasses dispensery we go in and I encourage Aidan to try them on. Today was the furthest we got with him. The young woman working with us was so good with him:

Aidan just loved her. So much in fact that he actually put them on his chin, which is a big improvement from throwing them over his shoulder.

I'm so grateful to this young woman for her help. We didn't order the glasses yet - she invited us to keep coming in until we find the right pair for him, and to help get him comfortable putting them on.

Maybe between Kieran (being so happy and proud with his pair) and this very helpful and friendly professional we'll get him wearing glasses before long.

A mom can hope.

Merry Christmas to all our friends on the Blogosphere!

2009-12-25T10:54:00.000-08:00

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Wordless on Wednesday

2009-12-16T11:16:00.000-08:00

Music Therapy

2009-12-09T14:58:00.000-08:00

Aidan is in music therapy - and loves every minute of it (as do I). It truly is the best part of our week. Our therapist, Johanne, is beyond amazing. She delights in the kids - and you can see by the joy on her face and in her music, that she loves her job. (I haven't put a picture of her here because I haven't asked for permission yet).

The photo below shows Aidan waiting for his session to begin. Usually there is another little boy eating his lunch after his session, and the two of them hug one another, and smile at each other. We get there early and wait, because I think the before and after can be just as important as the middle. I love how Aidan's face is lit up in this picture:

A typical session begins and ends with a hello/goodbye song. Then Aidan and another participant take turns making choices using photographs of the different instruments and activities.

Here's Aidan, choosing an instrument:

Johanne usually plays a song on the piano while he accompanies her on various instruments. Here he is playing the chimes:

and the drum:

and the keyboard:

Thank goodness for music therapy. Also thanks to our local Down Syndrome Society for assisting with the cost of this wonderful program!

What to say...

2009-12-07T19:28:00.000-08:00

In an earlier post I pondered what to tell young children about Down syndrome; as a four-year old was wondering why Aidan cried like a baby when he was three. His mom asked me what I would prefer and I told her I really didn't know what the right thing to say was. I indicated to be straight forward and honest - not making a huge deal. That if she accepts Aidan the way he is, then her son likely will too.

I had Aidan at the pediatrician's last week, and found out our regular doctor is on a mat leave, so we had a Locum (?) from Calgary. After visiting with us for a bit Doctor C told me that her younger sister also has Down syndrome. Can you believe it? I took the opportunity to ask her what she would say to the mom who wondered about how to explain Down syndrome, and her answer was very wise:

"Keep it simple. When a child asks how a car works - all they usually need/want to hear is that the motor makes it go. You don't have to go into pistons and fuel and all the nitty gritty. Usually they're happy with a simple answer. So, Aidan acts younger because he has Down syndrome. He's learning things on his own time."

Thanks Doctor C for the helpful advice - I'll use that next time the question comes up.

BTW - Aidan picked that hat himself. :o)

Busy day...

2009-12-03T21:04:00.000-08:00

Aidan and I have had a lot of appointments this week. He was to a pediatric opthamologist and now has a new prescription for glasses. He was great at the appointment, and so cute. After the drops were put in his eyes (which he did not like at all, and screamed and yelled and twisted and turned), he sat up and signed "all done!" The doctor chuckled. We went back to the waiting room while his eyes dilated enough.

We met a grandmother there who was waiting for her daughter and her granddaughter to finish. Aidan went and sat beside her and they read a book together. She was quite taken with Aidan, and he really liked her too. When we had to leave, he blew her a kiss. The rest of the appointment went fine. Dr. P. said he was a model patient!

Today he had a needle at our pediatrician's. Another lady in the waiting room fell in love with him. She said she had a friend who had Down syndrome when she was a kid, and that she found him to be so "pure."

I'm not sure if pure is the right word, but the fact that people are connecting with my little guy does my heart good.

How do I love Aidan, let me count the ways!

2009-11-28T21:50:00.000-08:00

I love that Aidan has a belly laugh that I wish I could bottle up and save for a rainy day.

I love that Aidan is signing and trying to talk. He is making many more speech sounds, and trying really hard to copy what we are saying.

I love that Aidan will sit and look at a book with great concentration.

I love that Aidan and Charlie are pals.

I love that Aidan brings out the best in his big brothers.

I love that Aidan likes to hold part of the leash when we walk Charlie.

I love that he is walking more, and holding my hand.

I love when he hugs me back.

I love when he talks into his hand phone.

I love when he talks to himself in his crib when he wakes up.

I love Aidan and I am thankful that he's in our lives.

Take that, you bad, bad boogie!

2009-11-24T09:28:00.000-08:00

We've all been sick - and while it was horrible, and we were tired, cranky, and sore from coughing so hard - there were a couple of good things to hold onto.

First, is James' lovely aunt who brought us soup, muffins, and Popsicles. She is so kind - and lives an hour up island from us. Her warm gesture means so much! Thanks Aunty!

Second is my friend Kathryn bringing us matzah ball soup, a baguette and a bottled smoothie. She's the nicest person on the planet, I swear. She also has three young children, works, runs her kids to after-school events, is in the middle of moving, and volunteers at the school - and makes soup for us. Wow.

Last is watching Aidan stomp over to the Kleenex box with wild determination, yank out a tissue, blow his nose and throw the used tissue on the floor with disgust, "take that you bad, bad boogie!"

Now I'm just very, very grateful that we're near the end of it...

Aidan's speaking in other languages again

2009-11-18T12:10:00.000-08:00

I wish I could unlock what Aidan is saying. Clearly it's in a language I haven't mastered yet - because he understands himself perfectly! I can tell by the way he intersperses his chat with the heartiest of chuckles.

His talk today went something like this:

Kung Pao Poutine Blah Blah Chuckle Chuckle Yep Oi Guy Ding Chuckle Yep.

Perhaps he's listening to James while he orders out?

Oh well, someday it will all be crystal clear.

Two sickies, no make that three sickies...

2009-11-16T23:11:00.000-08:00

Two boys and a dad are down in our house. Fevers, coughs, plugged noses. So far Aidan and I are okay (touch wood). Considering it was a sick day around her (for the boys...dad worked) we had not such a bad day. We did watch a lot of television though. Sesame Street for Aidan and then a couple of Christmas shows for the heck of it. The boys played a duet on the piano (Jolly old St Nicholas and Good King W)which is sounding better every day.

So, even when their down, their adorable. I love my boys, I really do.

Now, if it would just stop raining....

31 for 21: Still thinking...

2009-11-05T11:35:00.000-08:00

Well, 31 for 21 is over - and I did not too badly, but definitely didn't post daily like I was supposed to. The process of advocating for/about Down syndrome was an interesting one. But I hardly skimmed the surface! On Halloween night we attended a party given by one of Liam's classmate's family. It was amazing. We took Aidan (as a little fireman) for a little while, then he went home to bed with Dad.

After he left I was chatting with another mom and she said that her son (4) was asking why Aidan was crying. Why he seemed more like a baby than a three-year-old. She wondered how she should talk about Aidan and Down syndrome with her son....my response was, "I really don't know." I honestly don't know.

And I don't think I'm alone. This seems to be a struggle for parents of children with Trisomy 21. How do we describe Down syndrome:

1. without being overly technical?
2. with respect to our child?
3. with honesty (yes he's different - difference isn't a bad thing though, right?)?
4. without making a big deal out of it?
5. to our own child once they're old enough to understand?

I'm on a bit of a mission to find answers to these questions. My inquiring mind wants to know: what are your thoughts on the best way to describe Down syndrome?

Incidentally, one mom in our local Down syndrome group said she talks to her son's class every year about Down syndrome, but now her son is adamant that he does not have Down syndrome. She's wondering what to do now.

Also, I asked Kieran how he would describe Down syndrome to a four-year old, and he didn't know either.

31 for 21 -Last Day: Aidan's Halloween Rhymes

2009-10-31T21:50:00.001-07:00

This little video of Aidan doing a couple of Halloween rhymes was done with my webcam. So, the quality isn't great - but I still wanted to share it. The funny thing is that he loves to watch these little videos and participates way more...so, I will have to videotape him watching himself on video to get an even more animated Aidan.

Make photo slide shows at www.OneTrueMedia.com

31 for 21 - Day 29: Happy Post....

2009-10-29T08:34:00.000-07:00

The boys are looking forward to Halloween with great excitement. We had fun picking out pumpkins, scraping out pumpkins and carving pumpkins. We love Halloween, and I feel a little sad that the schools here can't/don't celebrate. They had a wear orange and black day, but it just doesn't seem the same. I know that it's important to be respectful of other cultures in our public schools, but at the same time, I miss the way we used to go all out when we were kids.

Charlie is a great, patient dog with Aidan, and I'm so glad. Now, I wish I could socialize Charlie with other dogs. That part of adopting an older dog is a little frustrating as we don't think he was socialized with other dogs at all.

Though Aidan finds it all very humorous.

On a different note, we are having a group of preschoolers/toddlers over to the house tomorrow for a Halloween storytime. I made haunted houses with a scroll of Halloween creatures that move through the door while we do a poem. I"m happy with how they turned out.

The poem, which Aidan LOVES goes like this:

Tip toe, tip toe, tip toe, tip toe.
Who's that knocking at my door.
Could it be a __________ (ghost, mummy, witch, monster, black cat, etc.)?
AHHHHH!
Run, run, run. Run, run, run.

I don't know the author of this little poem to give them credit. I heard it at Liam's old preschool. Ihave to catch Aidan doing this on video - his little scream is hilarious.

Take care everyone, and happy Halloween when the time comes!

31 for 21 - Skipped more - Day 25: The sadder side

2009-10-25T22:53:00.000-07:00

I don't know, I've been trying to think up something positive to write about - but I keep thinking of a few of our sad realities. So, if you don't feel like a bit of a depressing read: Stop. Reading. Now.

Before I had Aidan, I had no idea about all of the health concerns that go along with having an extra little chromosome. I didn't know that roughly half of the babies with Down syndrome have a heart problem. I didn't know they were more susceptible to leukemia, thyroid problems, digestive problems, respiratory problems and vision and hearing issues. I wasn't in the loop. On the day he was born I was handed the book: Babies with Down syndrome: A New Parent's Guide, and read the checklist that scared the crap out of me.

Now I'm in the loop, and we have regular doctor's visits and many, many blood tests. Aidan's already been diagnosed with an underactive thyroid and takes medication to help with that. He has food sensitivity issues (milk and soy), glasses that he refuses to wear, and I've already mentioned the three holes in his heart that are now fixed (thank God for that).

What I just learned, from James last night, is that Aidan's life expectancy is currently at about 55 years. My heart sank. How can this be? James said, "but that's better than just 10 years ago, so we've got that to be thankful about."

Still, it felt like I was kicked in the stomach. I had pictured Aidan becoming a sweet old man.

Re: Happy Halloween!

2009-10-24T10:12:00.001-07:00

Make a Smilebox greeting

31 for 21 - Skipped a few - Day 23: Aidan Antics

2009-10-23T10:12:00.001-07:00

Don't let this peaceful photo of a sleeping Aidan fool you, the times are getting busy with the littlest billy goat.

Two days ago, he was watching Elmo, so I was in the next room getting his lunch ready. I could hear him laughing, so I assumed he was enjoying the show. Unfortunately when I peaked around the corner it was to see that he'd discovered the fun in his diaper and had been doing his equivalent of body painting. "Straight into the bath with you little boy." My fault, totally my fault.

Yesterday we were expecting company for supper. Aidan was on the potty and I ran down to open the door, then said, "Aidan's on his own I have to get up there." When I got back to him, he was one very happy little boy, sitting on the bathroom floor surrounded by a whole roll of unrolled toilet paper. Shredding it and throwing it into the air like pieces of confetti. "Hooray!"

Alas, these are two of our anecdotes about Aidan's antics. Alliteration always awesome.

31 for 21 - Day 17: When Aidan's happy, he's really really happy

2009-10-17T22:37:00.000-07:00

Aidan isn't always a happy little camper. He has his moments of terrible threeness just like the big boys did. For instance, he doesn't like to go back in his stroller once he's out. He fights, does backward bends, goes limp and boneless, and pushes off against my neck like he's about to embark in a swan dive. These moments are physically tough. My shoulder hasn't stopped hurting in months.

But thankfully, these tough moments are interspersed with moments of great joy. When Aidan's happy - he lights up a room. His giggle is infectious, and can make even a tough guy smile.

My favourite moment today was during Aidan's bath. He was so happy. We were singing, and I was pretending I was a snappy (and snazzy) crocodile. He couldn't stop giggling....I wanted to bottle up that gorgeous sound and save it for a rainy day.

31 for 21 - Day 15 3/4: Down syndrome NOT a punishment, not at all!

2009-10-16T08:42:00.000-07:00

I just stopped by one of my favourite blogs - Big Blueberry Eyes. I'm sure you've heard of it if you're in the Down syndrome community. Michelle's is one of the very first blogs about having a child with Down syndrome that I came across three years ago. Her beautiful presentation of Kayla and her family made me certain that Aidan is going to have a good life. And that we are going to have a great life right alongside him.

Today Michelle wrote about someone's comments that are out there haunting the blogosphere. I've copied a portion of Michelle's post so you can get some of the context of my frame of mind this morning:

You'd think after 6 years I'd learn to grow some thick skin and not let things like what was said bother me, but this one just cut me to the core.

I've heard "suffers from Down syndrome" enough to become mostly immune to that ... although it does still irk me because Kayla is not 'suffering.'

But this one was something else, the commenter said: "...my belief that Down's is a cruel and unusual sentence to visit on a child."

Whoa!

Did I really just read that? Cruel and unusual?

Then there was this: "Far more Down's children live miserable, suffering lives than these individuals want you to believe. Viewing the lives of affected children, and simple education tells me that I could never force a child to endure what they would should they be born with Down's."http://mdbeau.blogspot.com/2009/10/cruel-and-unusual.html

After reading this, I have a very heavy heart. I know that it is just one voice in the conversation about Down syndrome...but I worry about who that voice belongs to. How much influence does that one voice have? What if a pregnant woman has been presented with a diagnosis that her unborn child will have Down syndrome? What if that pregnant woman does a little on-line research to learn more about having a child with Down syndrome? What if that opinion is the only one she reads before making a decision about her unborn child?

I'd like to end this post with a comment left by a former colleague of mine on a post I made a little while back. I worked mornings at a K-9 school with "Fergie," and I often took Aidan in for visits with the children and spoke openly about Down syndrome with them. This is the second year I've been away from that school (and that Province), but I'm glad to say the students have not forgotten Aidan. Here's Fergie's comment:

Hey Carol, this post struck a chord with me. I read The Memory Keeper's
Daughter this summer (on your recommendation) and then the other day in science class my kids and I were talking about genes and from there we started talking about different genetic disorders, down syndrome, you and your family and how people used to put people with down syndrome into homes. My kids were quite horrified with that idea. They all remembered Aidan and couldn't believe that
anyone would have ever done that. Hope your Thanksgiving is going well!
Okay, now my heart isn't quite that heavy. There's a whole classroom of middle school kids who are a little wiser for having met Aidan. Thank God for that.

31 for 21 - Day 14: Aidan is...paraphrasing what others have said

2009-10-15T11:58:00.000-07:00

Aidan is light. There's a brightness around him - we're all drawn to him. (our family friend).

He's so cute, I just want to hug him up. (stranger in the grocery store)

Aidan is a chick magnet. A ladies man. (our family friend)

He's the best little brother in the whole universe. (his brothers)

Aidan brings the best out in people. (me)

31 for 21 - Day 13: Aidan Retro

2009-10-14T09:41:00.000-07:00

They ought not to put a post-partumly depressed mother and her sick infant in a hospital room that overlooks the crematorium.

Those were dark days. The first month of Aidan's life we thought he was dying twice. In part because the doctors lead us to believe in the horrible possibility of his death. Over and above the three holes in Aidan's heart, we were told that he had possible liver failure (he had jaundice). Another time he had blood in his stool and they felt it must be necrotizing entero colitis (sp?) (he had a dairy sensitivity).

We didn't know that our doctors were thinking worst-case scenario and working backwards from there. James and I were frightened, felt helpless, defeated, and walked a fine line of mourning. It was hell. I've never felt more vulnerable.

The crematorium really was there below our hospital room window. And at night hookers and homeless people would walk by slowly. I had to think what I would do if Aidan died. How I would tell Kieran and Liam. How we would live afterwards. It was an incredibly sad time, and it took me months to recover.

There was one thing that helped me: after being in the emergency room for 5 hours, and realizing that they were waiting for a room for us, I closed my eyes and imagined my grandmothers and my dad standing behind me. Placing their hands on my shoulders. I should mention, that at this point in time my grandmothers and dad had passed on, and so it was quite a ghostly feeling, but warm too. It gave me the strength I needed to keep going.

How selfish of me. Here I am talking all about how I felt, when it was Aidan on the front line. He did very well considering how many blood tests he had and Intravenous pokes and x-rays. He was a trooper and came through everything with a determination that astounded all of us. Thank God for that.

31 for 21 - Day 12: The Aidanator

2009-10-12T10:12:00.000-07:00

For some time now, I've called Aidan, "the Aidanator" - or at least I've done so in my head. He barges into life with confidence and steadfast optimism....sometimes I wish I had some of his determination. Here he is balancing on washed-up logs at the beach:
If he wasn't doing this, he was trying to dive into the frigid water. He keeps us on our toes.

I threw this photo in because I thought he looked heroic...I just wish Charlie wasn't licking his own nose:

31 for 21 - Day 11: Yay, he did it again...

2009-10-11T23:54:00.000-07:00

Yes, another potty post. Sorry (well, not really - I am so proud).

Today Aidan sat on the potty and pooped. He seems to quite like the potty. We put a sticker on last time which was a Bob the Builder dump truck (no pun intended :o)
Today, when I took the stickers out, he knew what to do, and helped to put the cement mixer on. Aidan clapped wildly for himself - and was fascinated as we flushed it all away.

I hope I can keep up with the routine of taking him...I really feel pressure now (for myself, not him) to keep things as positive as possible with the potty.

31 for 21- Day 10: Walking around the lake

2009-10-10T22:34:00.000-07:00

We went for a walk in the woods today. Around a lake and back again. Happy to spend Thanksgiving in the crisp Fall air. Life is good.

If only we got our middlest billy goat to come with us - but he wanted to stay home close to the turkey. My oldest billy goat did a great job of keeping up with us, and seemed to really enjoy being out with us without having to compete with Liam for attention. It's at moments like this that I realize how important one-on-one time is for our kids.

This was Aidan at the half-way point. So peaceful. I'm not sure if you can see in this picture, but he sleeps with his eyes open a little bit.

This was one of those days when I didn't really think about Down syndrome. It wasn't an issue. All the family that came for supper know Aidan. And love Aidan. We've had conversations about Down syndrome, but I think we've moved past a need to talk about it. Everybody notices how he's developing, but there's no pressure. Aidan is developing at his own pace, we're here to help him develop in the best way possible. So, today wasn't about Down syndroem, (though you might argue that I'm talking about it now), it was about being together as a family and being grateful.

Some days are like that.

31 for 21 - Day 9: Other way around

2009-10-09T22:37:00.000-07:00

When Aidan first came into our lives, a few people said, "God gives these kids to special families." I didn't contradict them, but I think they had it backwards - and I know I've said it before: we're the lucky ones. We benefit every day from having Aidan in our family. I would not give him up. Ever. Thankfully we live in an era where keeping our child seems to be the norm.

Aidan after his heart was fixed.

But norms change. And I really fear that mothers are persuaded a little too much to have testing done, and are encouraged a little too often to think that there is something wrong with their child...before they're even born. Sometimes they're persuaded to terminate the pregnancy in the early stages - and I feel so sad for the doctors who think this is best. They obviously don't know anyone with Down syndrome. They haven't had that bond...yet.

31 for 21- Day 8: potty

2009-10-08T18:06:00.000-07:00

Today Aidan went on the potty - 2 pees and 1 poo. Isn't that extraordinary? He was so proud - he laughed himself silly!

31 for 21 - Day 7:

2009-10-08T18:00:00.000-07:00

Aidan has not been feeling well for two weeks now - he's dripping from the nose, he's coughing a bad-sounding cough, and he's chewing on his sleeves.

When he gets a cold I worry. We've been to emergency a few too many times with croup, and something inside of me tightens whenever his cough worsens. His passageways are smaller since he has Down syndrome, and croup just seems to love him.

So far we've stayed out of emergency. Today he was a little happier, so I'm hopeful that he's on the mend.

31 for 21 - Day 6: Company

2009-10-07T00:26:00.000-07:00

Today my in-laws arrived. Aidan was so thrilled to have his Dido back, he pushed me away when I tried to take him upstairs for a nap...but, he let Dido take him. Stinker.

31 for 21 - Day 5: kindness of others

2009-10-05T12:42:00.000-07:00

When Aidan was born, we lived in Winnipeg with no family close by. Our neighbours were great and automatically stepped up with offers to help.

One neighbour in particular holds a special place in all of our hearts. Her name is Sandra, and she was beyond amazing and wonderful to Aidan. When Sandra heard of Aidan's heart condition she offered to come and sit with him while I walked the boys to and from school. Kieran was in morning kindergarten, and Liam was in afternoon nursery school. In the dead of winter, Sandra would bundle up and come over so that I wouldn't have to take Aidan out in the cold. She always smiled. She would call out, "where's my little boyfriend?" She delighted in holding him in the rocking chair. She did this four times a day whenever she could. When Sandra would have to be away for work, she always gave me advance notice. On those days, Aidan would be under my jacket in a snuggly. He was so tiny!

My favourite memory was when Liam showed up with just a Darth Vader mask on, and nothing else. He stood there starkers and she just laughed.

Sandra was magnificent to us - a truly good and genuine person with a great passion for life.

While we have awesome neighbours in our new Province, we dearly miss Sandra and her wonderful laugh. Everyone should experience a neighbour like Sandra - at least once in a lifetime!

31 for 21 - Day 4: Blue pajamas

2009-10-04T07:29:00.000-07:00

This morning Aidan is wearing his fuzzy blue pajamas.
My heart melts.
Love spills into the room all around me.

31 for 21 - Day 3: Advocate This...

2009-10-03T13:59:00.000-07:00

In my humble opinion the best advocacy I can do for my son and people with Down syndrome is take Aidan out in the community with me. Little old ladies stop to chat with us in the grocery store. We meet other families who have children with Down syndrome in parking lots and we exchange quick nuggets of information. We play with other children at the playground. We volunteer in the school so that the teachers, students and support staff, parents all get to know Aidan.

He's a magnet. Other people, young and old seem to be drawn to him. I have never experienced a negative moment when we're out and about.

Aidan waves to people. Laughs. High fives. Claps. Talks on his hand phone. Plays ring-around-the-rosie. And basically charms everyone he meets.

I don't have to stand behind a podium to advocate for Aidan, though the day may come when I'll want to. For now, the best thing we can do is be out there for the simple joy of it.

31 for 21 - day 2: Life is full

2009-10-02T12:37:00.000-07:00

Life with Aidan is full. Full of joy, full of appointments, full of explanations, full of love, full of chromosomes (well, just one extra one really).

Today we took him to the walk-in clinic to have his chest listened to. When he gets a cold, it goes straight to his chest, and he barks. He's been to emergency on a number of occasions for croup and x-rays - though it's never developed into pneumonia (thank goodness).

The good news is, Aidan has a virus - his ears are good, throat's good, chest sounds okay. We have to be on the watch of course in case it develops into something worse - but for the time being we just have to give him a little extra TLC.

Still, his cough sounds horrendous. Wish him luck for a speedy recovery!

I'm doing the 31 for 21 Challenge!

2009-10-01T21:21:00.000-07:00

I've just learned about this 31 for 21 challenge to write daily for the month of October to raise awareness about Down syndrome. Why this month? Why now? Because, this is Down syndrome Awareness Month - so why not? I think it's a sign that I've actually come across this blogging event today on the first day - so I'm jumping in and rising to the challenge.

Now about our littlest billy goat. Aidan was born three years ago, and the fact that he has Down syndrome came as a complete surprise to us. Well, we were surprised, but we weren't. It's very hard to explain. James and I were aware that there was a higher chance of having a child with Down syndrome because of my age, so I think we both mentally prepared for it. Also, we chose not to have any testing done while I was pregnant other than the ultrasound. At that point we had a rather "whatever will be will be" outlook.

I have no regrets. None at all. I had a very good pregnancy. We all anticipated his arrival with great joy. We actually knew he was a boy from the ultrasound, and were calling him Aidan long before he joined us out of belly.

What I wasn't prepared for was his heart condition. I was not aware that there are so many other health complications, and I was quite floored by the news that he would need heart surgery. I cried my eyes out in the bathroom next to the Variety Heart Centre. I sat in the waiting room like a zombie. I felt like I was repeatedly kicked in the stomach. It was very, very hard.

This photo was taken when Aidan was almost a year old.

What helped? My big boys. They didn't see all of the complications when they saw Aidan. They saw their baby brother. They loved him up right from the beginning and it did my heart good.

What else helped? I went on-line. I searched for images of children with Down syndrome and came across a few group sites on Flickr. Going through images of children and their families made me have hope. Gradually I made connections and saw that other kids made it through with flying colours. Families survived the stress involved in watching their babies go into heart failure, and come out of the hospital pink and all fixed up.

What else helped? My family and friends. They were so amazing. They loved me even when I was strung out with anxiety.

What else helped? Respite services. I remember walking around the mall near our house...I was completely in my own head, but I needed that escape (even though I felt guilty at first). It was healthy to get away and come back happy to see my little guys.

This has been a rather long post - I'm excited about the 31 for 21 Challenge - but expect some brief entries to come.

Canadian Thanksgiving Coming soon!

2009-10-01T09:03:00.000-07:00

Life is good . . .

2009-09-25T12:57:00.000-07:00

except when it's not. But right now, it's good. No complaints - even when I wake up tired in the morning and need bunches of coffee to make me function.

The boys are soaring. Aidan is loving music therapy. I'm happy that we are meeting some other families who have children with Down syndrome. Kieran and Liam are adapting to their new classes splendidly. Piano lessons for the big boys seem to be going well, and Family Swim Lessons are a hoot. I got my assignment finished for this morning's 8:00 AM deadline, and James is wrapping things up on his Dissertation.

Life's good. :o) :0) :o)

3 Little Billy Goats

Happy Heartiversary, Aidan!

The Lake Huron Carolers

How do you do?

Kinder visit

Blue ink on a white page

How do you do it?

Painting the Lemonade Stand for Superheroes

I Dream of Old Brick Houses

If Birds Read Poetry 2 - and Someday Dreams

The Owl Swing: Poem for Babies Born with Down Syndrome

Boat for Hope

Holiday in the Park

All the other kids are waiting...

You're allowed. . .

"Where does INCLUSION work?"

Inclusion is...

Including Aidan - and things that keep me up at night

3 Little Billy Goats

Thinking About Inclusion and Paradigm Shifts

Change

Of Paints and Brushes and Owls and Stuff

Where Poetry and Tae-Kwan-Do Collide

Little Operation

Aidan plays a Christmas Carol

Holidays are Over, sigh.

Flight Pass to Fun!

A Ride with Santa in his Private Jet....

The thinking tree

Costume-ability

Aidan and the Great Pumpkin Patch

A Whole Whack of Love

Ring the Bell, Aidan!

Mon petite billy goat

The Little Gull Project

Aidan's Sand Box

Going on a whale hunt...

Saskatoon

View from the potty

3 Billy Goats

Glasses for a Day

Fortunate

Under a Prairie Sky

A few paintings

Boat for Hope

Hot off the Easel - The Knight's Gift

Sneaky plans and clever tricks...

Lovin' that music

Off the easel and pass the baby

Life is good...except when it's not

Playdate...best part of our week

Little Celebrity

Aidan is a Star! Indeed it's true - I just watched him on TV!

Another Obsession, Another Blog

My Favourite Day!

Anecdotes

More on painting

I made the pledge, did you?

Putting the Child First

Another Kick at the [Paint] Can

Olympic Grey Areas

Happy Valentine's 2010 to the Blogosphere!

The Owl and the Pussycat

Olympics for poets?

How did I get so lucky?

I can't stop thinking...

Glasses Day

Merry Christmas to all our friends on the Blogosphere!

Wordless on Wednesday

Music Therapy

What to say...

Busy day...

How do I love Aidan, let me count the ways!

Take that, you bad, bad boogie!

Aidan's speaking in other languages again

Two sickies, no make that three sickies...

31 for 21: Still thinking...

31 for 21 -Last Day: Aidan's Halloween Rhymes

31 for 21 - Day 29: Happy Post....

31 for 21 - Skipped more - Day 25: The sadder side