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!

Wednesday, July 25, 2012


Nickolas is being a show-off again!

Nickolas is counting to 15!

Like everything in Nick's life, he kept this little secret to himself, and then blasted his poor mommy out of the water!
We've started to use potty time for some learning, we did colours and then this week I thought we could move onto numbers. The potty is a great time to work, because it is quiet time, usually without big sister who likes to give him the answers.
When we started this week I was so happy that he counted to 3! Or counted 3 things that we had around the tub.

Then yesterday I had 10 toys all lined up for us to count.And he just kept going, all the way up to 15! (or five-teen).
I asked him if I could go and grab my camera, not really 100% sure that he would give a repeat performance for the camera. But off he went! I'm sure in his head he was saying (oh mom!)

There have been a number of things that I have been worried about developmentally with Nickolas. He didn't know his colours - or I should say, he refused to say his colours (saying that everything is blue) for the longest time.
But I was worried about his numbers, he didn't know them (or so I thought).
I guess this means we will tackle the alphabet next!
Sorry kid, no rest!

Sunday, July 22, 2012

Walking, Walking, Walking!

He is really walking!

I decided to give Nickolas a bit of a challenge when we went to a party yesterday.
We brought the walker in with us. AND we made him walk with it.

Made is a bit of a strong word.
Nickolas wants to walk with his walker now.
But usually before it was a hassle to bring the walker in, when we could just carry him to where he wanted to go to play with the other kids.

So I guess I should say that we made ourselves bring the walker.

The challenge - walk, in a crowd of people, people you don't know, in grass, and over bumps.
Challenge accepted!

It was 16 months ago that the idea of a walker was first brought up.
And 1 year ago that we tried out, and then brought home our first walker.
I remember I had dreams of Nickolas walking in the walker for Halloween. But even though things didn't move as fast as I had dreamed Nickolas still moved forward slowly, but surely.
And we worked with what he needed because I had faith that we would find the one.

Just before Nickolas turned 2, he took his first independent steps in the walker!
But the journey was not without hard work and some tears.
And the flexibility to change things up when we hit a plateau, or just wanted to find something that works.

And in April we had our very own walker!
I learned that we had to take some breaks from the walker. And I learned that I couldn't push it on him. But also that I could make my own adjustments - like when I put on the swivel control, so that even though it was harder for him to move, it gave him the ability to control where he was going.
Nickolas finally realized that he could do it!
And that's my recap of Nick's walker journey!

Saturday, July 21, 2012

Jumping for joy!

A mother will do anything for her kids.
Some things are just a little more difficult than others.
Like acting like a kid and playing on a trampoline! That was hard!

Especially with all the laughter!
Just to add a note - I did not at any time land on either kid - when I was looking over the video (even though I was there) some of the jumps looks like I landed right on Nick. So watch the video and enjoy - no one got hurt.

But sometimes we just have to sacrifice our illusion of acting like an adult! (even on the eve of your 34th birthday - maybe especially on the even of your 34th birthday)

I was a little hesitant to let Nickolas go on the trampoline to begin with.
My thought originally was what would he be able to do? He can't jump on it?

But really there was no harm in putting him in and seeing what he could do.
I really should have known better thinking he couldn't  do something!

And even without anyone else jumping on the trampoline, Nickolas still hopped himself all over!

Friday, July 20, 2012

Post-camp Party!

I think we have spoiled kids - as you will see over my next couple of blogging posts, the kids have 3 parties in 3 days.
But the first is a March of Dimes family BBQ.

There was lots of fun things to do.
Spider man was there, and so was Duke the Marlies dog-mascot

When we first met him in the hallway, Nickolas was TERRIFIED!
Shaking, screaming, I-want-up-NOW, terrified!

Nick kept calling him the bear. But he eventually understood that Duke was a dog.
And he would not let him out of his site while we were outside.

Even when we were home, Nick kept saying "the dog scared me".
Sorry Duke!

Nick wasn't really interested in much that they had.
He really wanted a balloon (unfortunately we said no, which was probably really mean of us, because w told Katheryn yes). But we just couldn't deal with 2 screaming kids.

They had a firetruck and firemen, a police horse (complete with police officer), a bunch of different animals, including this little baby kangaroo. Katheryn eventually got brave enough to touch him. But Nick was not interested.

What he really wanted, desperately, was to get his face painted.

So we decided on a blue Spiderman.

Everyone was happy!

Conductive Education Camp - part 2

The second week of conductive education camp went smoothly.
Nick knew he was being dropped off, and was really excited when mommy or daddy picked him up (because I'm back at work full-time I couldn't take the time off like last year - so Kyle and I split up the weeks). It was exhausting for all of us to be out of the house and ready so early in the morning. But definitely worth it.

Every day Nick came home with the fun crafts he had done that day.
(The time-travelled to the 60's)

And Katheryn wanted to do all the same things when she saw what Nick had!

And asking after Katheryn. As soon as he say me (or Kyle) the second words after "Mommy" was "where is Katheryn, where is Daddy?"
But I think the separation was really good for him.

Standing and do things, always adding some kind of challenge to what he was doing well at continued.
And Nick finally participated in the floor program (without crying) by the end of the second week!

 How did Nick become such a big boy!

Monday, July 16, 2012

Conductive Education Camp - part 1

Nickolas started his first child-only camp!
Nick was able to 'upgrade' even though he isn't 3 years old yet. They thought that he was ready to be more independent and with older kids.

So we had Conductive Education camp through March of Dimes for 3 hours a day, for 2 weeks.

It had only been a month or so since we had our final spring session with Abigail, so Nickolas knew exactly where we were when we pulled into the driveway.

But we did not talk ahead of time that he wasn't going to have mommy there. I didn't want to get him worried, and over the spring I started doing less and less so he could get used to doing things without me coaching him.

We walked in together. But when it was time for me to go...
And I left.

I had no idea what I was going to hear when I picked him up 3 hours later.
But Nickolas was fine.
They said he was upset and crying for about 30 minutes. And didn't participate in any of the floor part (which he hates anyways). But that this is normal.
And it will get better.

Nickolas got to walk through the doors - all by himself!

And I already showed the video of his experience with the ramp

Over the 2 weeks Nick got more and more comfortable and transitioned better every day.

Until finally the last couple of days we had absolutely no tears at the drop off!

And Nickolas made all kinds of new friends as he 'travelled back in time' in a time machine

We got a book at the end of camp with all of the pictures and what Nickolas was doing good every day - as well as talking with the conductors when we picked him up.

Things that we worked on was walking over a floor ladder or between parallel bars and stepping over things - going control over where his feet were going, instead of anywhere. Walking in parallel bars and between ropes - all with a fun activity (building castles, finding dragon food).
He also worked on picking things up with his toes (dragon food) and passing things to his friends.

Some of the things that Nickolas did well was sitting on the peanut ball, pinching things with his toes and stepping over a floor ladder

By the end of the week Nick was having fun with his new friends!
The ever-typical boy. Always wanting to be in the drivers seat!

Friday, July 13, 2012

3 years

It's been 3 years.
3 years since d-day (diagnosis day). Actually 3 years isn't for a couple of days - July 16th I think - but this is Friday the 13th and I thought it was appropriate.

I don't know how to mark the worst day of my entire life.
Except maybe to show other parents that the worst day of their life can't turn into the greatest joy they can know. And review a bunch of past pictures...

A couple of words in a doctors office doesn't describe what life having a child with spina bifida will be like.

The waiting, and wondering and worrying before the big day!

The introduction and realization that he is actually here! In your arms!

The unbelievable, I-didn't-know-my-heart-was-this-big, kind of love

On d-day you can't imagine the joy you hear in the first sound of laughter

The words 'spina bifida' do not describe my little heart breaker

It does not define the things that he can do, or when he will do them.

A diagnosis doesn't tell you the incredible bond he will have with his sister

Or how beautiful your child will be.

Thinking about d-day gives me an opportunity to go through all of the wonderful things I didn't think I would have 3 years ago.

An all-around fun kid!

Who sometimes needs some encouragement, but really just redefines spina bifida every day.

Who is just a little nervous about trying out new things (like the first time he was upright by himself - December 2010)

How a mothers touch can make all the difference, even when you feel you are powerless

They don't tell you on d-day how much your child will love the bath tub and bath time

And waits until everyone is watching before showing off (standing for the first time unassisted - Feb 2011)

And is so proud of himself!

The diagnosis of 'spina bifida' doesn't mean that you won't have a trouble maker on your hands!

Or a silly monkey - with a quirky sense of humor!

A little boy who loves animals and learning about new things

And LOVES, LOVES, LOVES chocolate!

On d-day all you can think about is how your child will be different from everyone else. But that's not true, he will fit right in with your family.

Until he wants to stand out and show he is his own little boy!

And that he really, truly is the coolest boy in town!
(Even with geeky parents)

With a family who only wants to see him smile, even when he is sad

And will light the way on whatever path he wants to take

Spina bifida (and d-day) will show you that you are stronger than you think you are (October 2011 - outgrowing his stroller)

and will help you have an open mind about things that you were always worried about

On d-day you realize that you life has changed forever. But as long as you keep moving forward with a smile on your face you will get to where you were meant to be.

And there will be love

And there will be laughter

And the rest just slides into place

3 years after d-day I only wish that there had been more awareness of what spina bifida truly looks like when we got our news

And somehow in 3 years (OK almost 3 years for this picture) we went from this...

To this...

And I wouldn't trade this craziness for anything!

Anyone wondering about how life will be after d-day should check out this borrowed post Sometimes the Doctors are Wrong Thanks to Jamie for collecting all of these stories in her blog!