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!

Saturday, September 28, 2013

Wedding Time

Today my sister got married
It was a beautiful day for an outdoor wedding. I have never seen her so happy!
And she was beautiful!
 The kids got to participate as well.
We had the ring bearer and the flower girl.
We attached the ring to Nick's walker, and Katheryn had bubbles to blow.

There wasn't enough room for both kids to go, so Nick went first and Katheryn went behind him.
As you see in the background, the flagstones were a bit uneven, but Nick did fantastic and Katheryn didn't have to help at all.
(Much better than at the rehearsal, when he tipped over and hit his head on the stones)

My sister got them the purple accessories so we all matched!
(I couldn't get Kyle to try the purple)

After the ceremony the kids loves playing in the fountain

Or just watching

Katheryn wasn't very happy with posing for pictures, but we did get  some out of them with kind of a smile

And of course some with the bride.

As the maid of honor I followed them when they went for photos, and tried to catch off-moment ones that were different from their professional photographer (and not getting in her way)

And of course I had to be in some pictures too

Afterwards we went to the reception dinner.
It was nice and intimate. The wedding only had about 25 close family and friends invited.
Laura had only decided they were going to get married 6 weeks ago.

The kids had fun playing with my best friend, Lisa's kids, as well as her I-phone.

And Kyle felt that 9pm was an appropriate time for Nick to try coffee for the first time.

He made this face every time, but had about 3 sips before saying no more.

 Congratulations to Jamie and Laura Mack!
Welcome to the craziness that is our family!

Thursday, September 26, 2013

Six Questions

Jill tagged me to do these questions last month.
I thought it was a cute idea, cut and pasted the questions here.... and left them for a month.
So better late than never! Here we are!

1. Is this how you imagined your life would be?
No, it is so much better.
I didn't really imagine what my life would be like growing up (beyond children), but I know that I am exactly where I am supposed to be. No doubt.

2. What's your drink of choice when out with girlfriends?
Tea. Definitely tea. I have a whole cupboard full of team.
Oh, do you mean out with the girls at a bar? Hmm I can't really remember that far back

3. What hobbies do you have that you don't mention in your blog?
I don't have very many hobbies right now, I try to write in my journal a little different from my blog, but that has fallen away in the last couple of months (I started when I got pregnant with Katheryn).
I love history and geneology.
I have all kinds of files and census's and certificates and can go back to about 1839 for some of my family, longer for Kyle's. There is a whole gedcom file online somewhere with my thousands of geneology connections (the farthest relative I could find was a 10th cousin)
I used to have maps and charts all over my bedroom walls.

4. Name one thing about yourself that has surprised you.
I like to speak in public.
I look for opportunities to do public speaking.

5. How did your blog come about?
When we got the diagnosis that Nickolas was going to be born with spina bifida, the medical professionals were so very negative, but the actual spina bifida community was very positive.
Actually seeing what spina bifida looks like... what our life could look like... had a great impact on how we felt about the diagnosis.
I wanted to share our story to help families like us, but also to connect with the whole spina bifida blogging community - and keep family updated in the meantime!

6. If money were no issue, I'd purchase...
A housekeeper.
A dirty house drives me C-R-A-Z-Y! And every time I turn around there is more in my house that is dirty. Someone to clean my house would be wonderful. (And we'll work to make the money for our fun vacations in the meantime)

I would be very interested to see how 2 of my blogging cousins would answer...
So Jim... Rob....
And Amberly because she is newer to the blogging world and it's fun.

Monday, September 23, 2013

The short bus

This is one of the things that I found challenging last year. Any time I thought about school, there is was... front and centre.
My son will be riding the 'short bus'.
He will be identified before he even gets off the bus.
As he rides through the neighborhood.

Just this weekend I was watching a movie that brought it all up again.
One of the "funny" insulting lines that one character called another. "Hey short-bus"
Because, you know, it is really witty to make fun of children who are different.

And then almost the very next day one of the my co-workers brought up 'the short bus'.
Her daughter had asked why she had to ride a big bus with only 5 or 6 other kids, why couldn't she ride in the small buses? Wouldn't it be more energy efficient?
And my co-worker realized that she didn't know what the 'short bus' was.

And I have noticed a number of buses through the neighborhood.
It is nice to know that there are kids who are growing up not knowing this derogatory term.

So the anger I felt at hearing the term on a movie, made me feel better that it might hopefully be only my own generation who see this as negative.
And kids these day may just see it as environmentally friendly.

My own feelings about the 'short bus' I continue to work with.
It is here, it is needed, Nickolas loves riding the bus, the bus driver is fantastic. So I pretty  much just need to get over it.
And if people want to make judgements based on what kind of vehicle Nick arrives in, then I probably don't want to know them anyways.
Nick loves his 'short bus' and it meets all of our needs.

I will have to deal with my concern with busing next year when he is with Katheryn. But that is a whole year from now!

Saturday, September 14, 2013

That's my boo boo?

We were going around the house and looking at pictures today and Nick stopped at this one

He said, that's Katheryn, and that's me. Is that the boo boo on my back?
And it was like he just realized. Because of course he can't see his back so he has no idea what it looks like. Other than this abstract idea that there was a boo boo there.

Why is it there mommy?

We've talked about it before, and I'm sure we will talk about it again.

Me: Nick, when you were born you had a hole on your back. And that doctors fixed it and left this scar
Nick: Yes and that's my boo boo
Me: That is the scar from your boo boo. It is all fixed now.
Nick: And that is my scar. When will it go away?
Me: Well, it won't go away. It will always be there.
Nick: OK. When I was in the hospital you are Katheryn were there?

Why was I in the hospital?
Was I a baby?
Was Katheryn there?

When he was asking questions, Katheryn piped in.
Because you had a hole in your back when you were born.

I'm glad he's asking questions.
Just hope I'm answering them right!

Monday, September 9, 2013

First Day of School... For real

We had some big first day of school this year!
Katheryn started SK last Tuesday, and she was nervous at first, we only found out who her teacher was and who were in her class the Friday before.
And Nick started JK today.
Oh my! They look so big!
And for being so good and posing for first day of school pictures.
I get to take some funny face ones too!
We've done lots of talking with Nick about school, and how he was going to have his teacher, and other students. And it would be fun.
So he has started to get excited about going.
(After the initial pictures I let Nick put his sweater on, it was kinda cool out)
Then it was time to wait for the school bus!
When we did our tour of the school in June we got to go on the bus, but Nick had been in his walker, so he didn't get to go on the ramp. But Nick will be taking his wheelchair on the bus (and leaving his walker at school for now).
So we got him all buckled on and ready.
He got a little jumpy when it first started moving, just it goes super slow and I even got a wave! 
We got him into his seat and then all of the tying up and seat belts and everything came in.
(notice the canes on the back - yeah I got in trouble for that, apparently it isn't safe to have canes on the back of the wheelchair)
More straps, nice and secure, and closer to leaving...
And then Jennifer (his daycare) and I were going to be going, and he was going to be on his way to his first full day of school!
And Nick started to get nervous, I could still get a smile out of him.
But this is definitely his nervous face...
We talked about his teacher, and the classroom and that he got to ride a bus. So he knew he was going to be having fun, but he was still nervous about the change.

No tears (Nick or mommy). And then he was ready to go

Got another wave through the window.
And my little boy was off to his first full day of school.

I have a year to prepare for this day, and I did my research and know how important this is for him (besides which I have no desire to homeschool).
But it's that milestone.
Now he is going to school, all day, every day.
This is it!
It seems like we have worked hard to get this place, but also that it wasn't that long ago that we were here

Wednesday, September 4, 2013

First Day of school... kind of

Nick's first day of school was  today.
For an hour.
We got to go for a parent-teacher interview, and Nick got the chance to explore a bit on his own time
 Yes Nick I'm still coming.

They had a time for us, and we were all welcomed!
Nick got to go and explore and I got to have the interview.
I sat with his teacher, 2 EAs, and then also the PT, OT, and S/L. And we talked for an hour.
We went over where we are, what goals we have, what to expect. Communication plan and also talk about therapy plans and parental involvement.
We covered bathroom and equipment and orthodics.

Nickolas in the meantime had disappeared and was off exploring.
When I tracked him down and asked him if he was excited to start school next week

 He said yes