Wednesday, August 26, 2009

Post Traumatic Stress Disorder in NICU parents

Twinmama over at The Galli-ringo Family posted this article today. It talks about Post Traumatic Stress Disorder in parents of NICU babies.

I can I'm sure many of you can. I thought it made for some interesting reading.

Tuesday, August 25, 2009

The words I hate

I really don't mind talking about Ben and his CP. Most of the time, I actually enjoy it. I like it that people are interested. I enjoy educating them. Mostly, I think I just like to talk about how amazing my Ben is.

But there is one comment that alot of people make that I absolutely hate. It doesn't always sound exactly the same but the meaning is the same. Basically the person thinks that I should be grateful that Ben isn't worse off. Basically,


I get what they are saying. I really do. I AM GRATEFUL. I am filled with gratitude each and every single day. I read ALOT of blogs. Most of these blogs are written by moms with a special needs child (or children). And there are kids out there that are a lot worse off than Ben.

There are kids on feeding tubes and oxygen. There are kids who are blind or deaf or both. There are kids who don't have speech. There are kids with cancer and brain tumours. And there are kids that don't make it.

I GET IT. It really could be worse.

But don't they get it? Don't they understand that it SHOULD be so much better. Don't they see that Ben should be able to walk and run and jump? Don't they understand that Ben shouldn't have to spend hours each week in therapy? Don't they get it that Ben should be able to play tag and hide-n-go-seek and kick-the-can? Don't they know that Ben should be able to dance at his wedding?

I know that they are just trying to make me feel better. But for some reason, it doesn't. For some reason, it makes me feel that they really aren't trying to understand our situation at all. For some reason, it feels more like they are just trying to make themselves feel better. They want to think that we have it good. That things aren't really so bad for us.

When the reality of the situation is...IT SUCKS. But of could suck even worse.

Friday, August 21, 2009

Just around the corner...

Our backyard last Fall

My favourite time of the year is just around the corner. I love Fall. I start thinking about it every year starting sometime in June...probably on the first hot day of the summer. I think it must stem from when I was a kid. I loved "Back to School". I loved getting new clothes and school supplies and heading back to school to see what all my friends had been up to all summer.

Now I love Fall for many reasons. Cool mornings followed by warm afternoons. The colours of the leaves. Halloween. Football Season. Thanksgiving. Apple picking.

I also get to be ME (yes, just plain old me...not wife, not mommy...ME) for most of the month of October. I work in October. It's the only time where I actually work and get paid. And I actually get on a plane and leave my husband and kids. That's hard but it's great to just be me for part of the year.

Oh...and another awesome part of Fall...getting ready for Christmas...and maybe even that first snowfall.

What's your favourite time of year?

Thursday, August 20, 2009

52 Hours

As I've posted before, Ben has been doing very well with Speech. He's been in Speech Therapy for about 4 months now (once per week). When he first started, he had about 5 words...although he had stopped using them. Now, it's a completely different story. I'd guess he has 40 words. Maybe more. He doesn't form any 2-word sentences yet but he's very verbal.

He had Speech Therapy this morning and she's so happy with him, she doesn't want to see him for SIX MONTHS! I was thrilled. I knew she was going to cut back how often she saw him, but I had no idea that we'd get 6 whole months off. Granted, she wants to see him if he's not forming 2-word sentences by November. But I'm sure he will.

So basically, I have 52 hours per year to fill up. I'm not quite sure what to do with it.

Wednesday, August 19, 2009

Wish List Wednesday

For my first instalment of "Wish List Wednesday", I only have one wish. I want a picture like this...only with my kids in it...

Friday, August 7, 2009

Our morning photos

Most days of the week the boys and I head out for our morning walk. I try to get out of the house by 8:15 and we get back around 9am. Somedays I don't say much and use the time to hear myself thing. But other times I use the walk to try and show them new things and teach them new words.

Here they are as we head out. All summer they have loved wearing their "GAP" hats. But they wouldn't wear their sunglasses. Well, on this day, they decided they had to wear their glasses. Aren't they just adorable???

Doesn't Daniel look oh so serious in this pic? He's probably checking all the "cucks" (i.e. trucks) in our neighbourhood. The neighbours are doing renovations so there has been lots of activity on the court these days.

Ben looks almost sad in this photo. I'm not sure why...but he's totally cute though.

(Just a side note...early in the spring he couldn't sit up in the stroller and would just lie back in it. To get him more straight up and able to see the world, we used to put a rolled up towel behind him. But he doesn't need that anymore, he sits up nice and tall and checks out the world. Just another sign of how far he's come.)

I'm not sure what they're "talking" about in this photo but it was just too cute to leave out. Ben is on the right and obviously explaining something to Daniel.

At this point in the walk, they have found something that has piqued their interest. They are freaking out here (although Daniel doesn't look like it here). I decided to take a picture of this thing of interest...

A digger!!! How exciting! They were just thrilled to see this on our walk. But they were confused why it wasn't doing anything. So they then kept saying "stuck". And I agreed. Yes, it must be stuck and that's why it's not doing anything.

On this walk, I taught them what the sky is. I explained that's where the birdies and the airplanes are. A plane actually flew overhead and Daniel is pointing to the sky and saying "sky" in this shot.

I also took the opportunity to teach them what a Stop Sign is. They were quite excited and kept saying "top"... and for the rest of the walk, when we came across one I would do an exagerrated stop at each one. They loved it.

And here they are at the end of our walk. We got home just as our nanny was arriving and as you can see, Ben was very happy to see her.

Wednesday, August 5, 2009

The Girl I Used to Be

I just came across this poem on "Our Life with Multiples" blog. It made me cry so I thought I'd share it with you.

The Girl I Used To Be
Rowena K. Lewis

She came tonight as I sat alone
The girl I used to be....
And she gazed at me with her earnest eye
And questioned reproachfully;

Have you forgotten the many plans
And hopes I had for you?
The great career, the splendid fame,
all the wonderful things to do?

Where is the mansion of stately height
With all its gardens rare?
The silken robes that I dreamed for you
And the jewels in your hair?

And as she spoke, I was very sad
For I wanted her pleased with me...
This slender girl from the shadowy past
The girl that I used to be.

So gently rising I took her hand
And guided her up the stairs
Where peacefully sleeping, my babies lay
Innocent, sweet and fair.

And I told her that these are my only gems,
and precious they are to me;
That the silken robes is my motherhood
Of costly simplicity.

And my mansion of stately height is love,
And the only career I know
Is serving each day in these sheltered walls
For the dear ones who come and go

And as I spoke to my shadowy guest,
She smiled through her tears at me.
And I saw the woman I am now
Pleased the girl I used to be

Lessons from the first year

This week's "Question of the Week" from the Multiples...and More blog is "What is the biggest lesson you have learned in your multiples' first year of life?
I think for me the lesson was to never take anything for granted. Before I had the boys, I really didn't think that my life would be anything less than perfect. I certainly didn't think that I would deliver twin boys at just 30 weeks gestation. I didn't have any idea that they would spend their first 8 weeks of life in a hospital and not at home in their nursery. And I really didn't expect that I would have a child with special needs.
But all of these things happened. And any day now, something else could come along that will make me realize how great my life is NOW. So I try to sit back every once in a while and think about my life. I try to appreciate all the wonderful things in it. And there are so many awesome things in my life. I have a wonderful husband and 2 amazing kids. We all have our health. My kids still have all of their grandparents. We don't have to worry about how we're going to pay the bills. And next week we're all going away on our first family holiday.

And check this out...don't I look like the luckiest girl in the world?