A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, February 21, 2012

Coming to terms

Terminology is a weird thing.

Just a couple of words can change the picture that you have in your head about what is going on.

Spina Bifida Child

I'm sure there are a ton of terms I can add to this list. But I thought I'd keep it short.
What do these terms all have in common?
What picture does it produce in your head?

What about the more PC terms. The ones we are supposed to be using. The ones everyone is supposed to be using, but sometimes old terminology slips in - because what is the difference?
Let me tell you, there is a big difference.

Physically Challenged
Child (born) with spina bifida

What picture do these words produce?

Are these better? Worse?
Words won't change what is happening in our lives, but they can just produce that different picture. That different way of thinking.

That last one is a pet peeve of mine. Spina bifida Child - I don't think so. It does not define my child, it does not rule our life. But yes, my child was born with spina bifida. I know alot of people who still say spina bifida child (and I'm sure I was one of them in the beginning), and I know it is used in articles and online resources all the time.

I probably wouldn't have even noticed until I was the mother saying my child was born with spina bifida.

That being said I do say that I am a spina bifida mommy. Probably because saying that I am a mother who has a child who was born with spina bifida is just so much longer than saying SB Mom.

I recently read a blog with a guest writer who discussed the term physically challenged. I wasn't quite sure how I liked that term. Then I started thinking more about it.
Challenged means there is, well, a challenge. To work for, to overcome, but not be defined by. Challenges are to be faced head-on. I challenge you! I started liking this term so much better.
Alot better than dis-ability, like Nickolas does not have the ability to do whatever. End of story.

Special needs is another term that I'm a little wishy-washy about. It's pretty vague and brings to mind images that aren't necessarily true.
And handicapped just brings to mind old people and metal bracing and sick people. Again, that word capped, as in you have reached your limit. Do not pass go.

Handi-caple just rubs me the wrong way. It just reminds me of handicapped with a politically correct twist.

So that is my two-cents about me coming to terms.

Monday, February 20, 2012

What's new?

Last family day we had some big accomplishments - STANDING!

I will always, always have a special place in my heart for this holiday!

This family day we are a little lower-keyed. Just so much has happened in the past year! We were just beginning to stand then, now we are walking with the walker (or holding hands), wheeling with a chair (calmly), climbing up stairs..

... and our newest accomplishment (and something I had as a goal for physio) climbing down stairs!

I'm not too sure if this is a good thing or not.
Yes it is. I know it is.
Nick can climb up those stairs like it's nothing. I turn around and he's upstairs getting into trouble with his sister. Then she comes downstairs for something, and there he is at the top of the stairs crying for help.
So we've worked on giving him the knowledge and ability to get down the stairs himself.
The slow way.

He's already learned the fast way - and got a black eye and some scared parents in the process.
He'll still start to go down head first, and then we have to remind him to turn around and go down bum first. I imagine it is difficult for him. He can't see, can't feel when his foot is on the step and yet he still does it.

His language is also our greatest challenge.
Sometimes I think Nick is joking and other times I wonder.
Does he know his colours? Is he screwing with me?
He still calls everything blue. Does he thinking everything is the colour blue?
No means yes. What about counting?
We've been working on counting 1-10, sometimes I think he gets it. Other times I'm not sure. Again, he gets stuck on some numbers. Calls everything four, six. And smiles that little smile of his!

But like looking back at last family day. And look at us now, I need to look back at 6 months ago, even 3 months ago! Nick wasn't saying anything last summer. He was making the motions with the supportive walker. Not even close to taking independent steps!
And no words. No mommy, (Or ma, as he's saying now).

So this family day I want to sit back and watch my family be together. And be amazed at just where we are now.
Tomorrow I can worry about something else!

Sunday, February 12, 2012

More Zoo!

The Toronto zoo is one of my favorite places to take the kids.
We have a season pass, and I could fill my blog with all the trips to the zoo!
I always think that I won't take very many pictures this time around. And then I end up just click, click, clicking, and  somehow I took 140 pictures!

I like taking pictures of the animals
I love taking pictures of the kids
And I really love taking pictures of the awe of the kids looking at the animals.

This time around we went for something special.

The new baby polar bear

It was pretty cute, but Nick had a hard time getting close to it in his wheelchair. And people crowded around the area to get close. Katheryn was more interested in the movie about the polar bear that was playing in the tv nearby anways. But the bear was pretty cute!

The animals were pretty active. The polar bears and wolves were actually running around.
So we got to see alot of action when we were going through our polar bear route.

We always start with the polar bears, and then go through our regular routine: Polar bear, pizza, penguins.

The pizza and penguins are at the top of a hill.
So we even get our exercise!

The pizza revives everyone enough to be silly!
(I LOVE this picture)

And Katheryn gets a chance to climb on some rocks. Climbing is her favorite!

Photo op time!

It was too cold outside for the penguins so they were inside. But Katheryn and Nick didn't really care.
They pressed themselves up right against the glass to get as close as they could.

See those 2 penuins looking at the wall.
When I wasn't taking pictures the light was flashing off the lens and projecting against the wall. And like cats with a lazer pointer...
The penguins kept watching the wall and chasing the light (I didn't realize I was doing it). I couldn't figure out why the 2 penguins were looking at the wall like that.
Kyle told me what they were doing.
But we did more than just look at the animals.

Katheryn loves racing.
Everywhere it is race, race, race, race, race.
She used to be a bad sport. If she won it was 'go me, go me' (complete with dancing).
We tried to teach her that she doesn't win every time. She used to get really upset if she lost.
Now she says 'we both won'.
Nice open paths, not that many people. Perfect place for races!

We went to an exhibit we usually miss. I haven't actually been in the Rainforest exhibit in years (I acutally forgot it was there, we usually do a loop that just misses it). It had animals that the kids haven't seen before!
With Gorilla's!!

And turtles that you can press your nose right up against!

The fish were a favorite. And of course an oppurtunity to practice standing.

How can you not love that look of awe in those eyes.
Watching all of those fish swim around, so close you can almost touch them!

I remember when we first got the spina bifida diagnosis. I remember all of the thoughts and worries that went through my head. That are so silly now, but were real at the time.
Like will Nick be able to swim in the lake? Will he be able to play with Katheryn? Will they have fun together?
Spina bifida is always close to the surface - but sometimes it is thoughts like this. The joy I see when I look at my kids. The love, the laughter, the jouney together.

OK enough of that kind of talk, back to the zoo.
I think we get a couple of looks becasue Nick is in a wheelchair. And I used to think that I would care. But I'm too busy watching Nick explore like he was never able to in a stroller. To push and move himself right where he wants to go!

These little guys (lemurs) come so close!
They scared Nick at first, becasue he didn't realize that there was glass there.

On the way out we stopped for a quick photo!
(Katheryn just wanted to get home.)

And Nick had  alot of fun rolling super fast (with daddy) down the hill!

At the end of the day we had an adventure girl who had alot of fun! and was really good at letting mommy snap alot of pictures.

And one very sleepy little boy!

That was one fun, family adventure!

Friday, February 10, 2012

Can I have a word? Or 3 or 4?

Who needs speech therapy?!
We're doing all the work at home!
It's only been 10 days since I took the last video and already I can notice the difference between how Nick talks then and now!

And in case you don't get what he's saying...
He has started to play a game, he hides his hand and says "where is it?" then when it uncovers "there it is".
Nick is also using 3+ words in a sentence!
And he really loves talking. I could take videos all day, every day!

It just gives Nick an opportunity to clown around some more!

Wednesday, February 8, 2012

Thanks Bernard!

Happy 13 month anniversary Bernard!

If you have no idea who I’m talking about, you /can read here where I was trying to decide on an appropriate name for Nick’s second shunt.
I thought about celebrating the 1 year anniversary of the shunt, but that didn’t work out so well last time. When Nick had to have a revision at 13 months.

So 13 is the new 12! Seems fitting for a Friday the 13th baby!

After reading the post from 13 months ago, I am more calm with the shunt right now. It`s never far from my mind, but it hasn`t been on the radar lately (and I`m really hoping I am not jinxing myself). I haven`t measured his head in a while, we are cleared by neurosurgery for 1 year and Nick is behaving like himself.
But at the same time, when Nick wakes up in the middle of the night uncontrollably crying and upset, I mentally pack my bags for the hospital. But when a dose of tylenol and the morning comes and everyone is fine again I feel much better. That being said, I have emailed Nick`s neurosurgeon 2 or 3 times this past year.
I know the day will probably come, but I`m hoping that it`s in the far distant future.
So Bernard is welcome to stay off the radar for a very long time.

I saw (adapted) something today that is very appropriate:

You can`t scare me,
My child has had brain surgery.

Tuesday, February 7, 2012

A Day in our life!

It might seem that we are always out having fun, trips to the zoo, Build a Bear, Ottawa or going to the doctor/clinic or physio.
Believe me, sometimes it feels like that.
But the rest of the time we are just doing boring stuff.

Watching TV
Doing laundry
Sweeping the floor (this is as clean as my house will get some days)
Playing inside, playing outside
Fun trips to the grocery store
Or just doing nothing

I also work outside of the house. Sometimes alot (too much) and sometimes I have a break of a week or so between shifts (the joy of job-sharing).
I'm a nurse and sometimes that job comes home with me. No, not any nasty bugs (I try really hard to prevent that). But just the emotional toll of a bad day.

Some of home comes to work with me as well.
I think after having kids, but especially Nickolas I am stronger at work.
I had one situation where a doctor (we didn't usually work with) was nasty and talking down to me. I had a number of other people (nurses and doctors) say how calm I was and how I didn't let it bother me.
In my  head I was thinking that doctor is an ass, but he can't scare me. My son has had brain surgery . And sometimes that puts it all in perspective.

How many things can you really put in a day?
we try to fit some working, some learning (we are working on colours for Nick and certain sounds for Katheryn), some fun. And some mommy free time.
Balanced between the 2 kids.

Our current battle is to try to get a few healthy meals into the kids that they will eat.
Ha ha!
My kids refuse to eat anything particularly healthy.
We have just started to feel them what we are eating, no exceptions.
I know it's easier to just give in and give that hot dog, pizza or PB&J. (And I wonder when we have constipation issues?)

So what do we have covered?
Playtime, eating, cleaning..

My kids gave up their naps a couple of months ago. Oh how I miss that nap!
They wake up late.
I generally won't let them sleep past 9am.
No nap, unless we are in the car and then sometimes
We go up for bedtime between 8 and 9pm.
Bath, cath, pjs, stories and snuggles until either mommy or kids fall asleep - usually somewhere north of 10pm!

So that's our day!
Oh yeah, and Kyle is in there with me (I use the royal we)

Monday, February 6, 2012

A little winter would be nice!

I never thought I'd be wondering where winter was in February!
Or still thinking how beautiful the snow is while I'm driving to appointments in the morning  -before the snow melts on all the trees.

But every day we have snow seems to be a time to pull out the camera and take some pictures as the kids take in how wonderful it is to have everything covered in the white stuff!.

I LOVE this picutre!
Not only are the two of them standing up against the window together. But Katheryn is holding Nicks hand! I think that makes up for the kids scuffing the newly painted window ledge!

Friday, February 3, 2012


The kids got a Build-A-Bear gift certificate for Christmas, and after a couple of calender dates were aligned we finally had our date!
It was a whole family affair  - Kyle had Katheryn and I had Nick. Also my brother-in-law, sister-in-law came with my niece and nephew, and my mother in law.

I've seen the store before and thought it looked interesting, but never really went in to see what it was.
You get to personalize everything.
You get to pick the type of bear, add some sounds, add stuffing and then pick out all of the clothes and accessories.
Sounds fun right?

First there is a whole row of empty bears. And you get to pick one.
Ideally the one your kid wants.
Nick liked all of them. Every one he was in front of he wanted.
Katheryn on the other hand knew exactly what she wanted.
The polar bear. Because "polar bears are my favorite"

After picking the bear you want then you stuff it.
They have a whole machine filled with stuffing!

The kids get to stuff their own bears by stepping on a lever and fill it as full as they want.
Nick kept crying when we gave him the bear. He still wasn't too sure about what we were doing.

Nick and I got to tag-team the lever. He was a little unsure at first, but once he figured out that what I wanted him to step on actually did something. Then he got into it.

We got some sounds in it as well. For Nick's I chose giggling and a multi-sound from Happy Feet 2. So when you press the hand/foot it makes a sound.

After the bear is stuffed like you want it, you get to choose a heart to put inside of it.

Katheryn had to rub the heart against her heart, against her hand, tell it a secret (Katheryn looked at the lady completely confused with that one), give it a kiss and then put it inside.

Then it's time to get dressed!
There are a TON of clothes to pick from (alot more girl clothes than boy clothes).
But everything from holiday clothes, pajamas, costumes, work or just every day clothing. They even had underwear!

Nick didn`t really care about the clothes. But the sun glasses were a definite hit!
And those cool shoes!

Nick just really wanted those sunglasses!

And yes I know it looks like he`s strangling his bear.

But we finally got Nick`s bear all cooled up!

All of the kids got some accessories.
Accessorizing at the toy store!

Katheryn`s polar bear not only came with a red dress, shoes, hair ribbon and red purse - `red is my favorite colour`. But also the stroller and a cell phone!
Katheryn was happy with what she got!

Nick`s bear came with the sunglasses, and his very own wheelchair. Including a rocking shirt - that plays the guitar!

And his very own guitar! (which doesn`t actually make any noise)

Definitely a super-fun adventure for the kids!