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!

Monday, October 31, 2011

My hero! Happy Halloween

Back in August I was trying to figure out what to do for halloween costumes.

Then it hit me! Nick's knight! What a perfect costume, or a dragon and Katheryn could be the matching princess. So I asked Katheryn (because she cares) what did she want to be for Halloween (and this is back in August - I think she thought I was nuts - I know Kyle did).

I had images of doing a dragon or horse or something with Nick's walker. Yes, I did anticipate him walking with it, back in August. Little did I know how resistant he would be! Or how much he would hate it, and trying to find the right one.

Katheryn decided she wanted to be a princess. Then she saw me looking over all of the dragon costumes online and changed her mind and said she wanted to be a dragon. Luckily I know my little fickle girl. The costumes arrived (online shopping - thanks ebay!) A knight costume, a princess costume and a dragon costume. Also a dragon puppet for a prop.

Katheryn wore the dragon costume a couple of times, was upset that it wasn't green - her newest favorite colour. It was red, but she didn't really agree with mommy that all dragons are green, and red dragons are special.
So she started saying, very sweetly, that she wanted to be a princess. (imagine the head tilt and sugary voice "I want to be a princess for halloween). I did have in my head that we can have the whole family halloween costumes like last year. And have a queen and king, princess and knight. Or maybe a witch thrown in there, or the dragon puppet, or something.

But Katheryn has since said that she wants Daddy to be a wall and Mommy to be a potty. Umm, thanks Katheryn. I'm not sure what is worse (actually I do - who wants to be a potty?!)

So we've tried on our costumes, we know that they are adorable and cute.
We are ready to have our first time of trick or treating. We even have the buckets all ready.

Now all I have to do is convince Katheryn that she doesn't want to be a clown!
Maybe a clown princess?
But now halloween morning, everyone is all ready to get into their costume rules!
Including saving the princess and slaying daddy-dragon!

Sunday, October 30, 2011

Just clowning around!

And no, these are NOT their Halloween costumes.
Their Halloween costumes have been thought about and bought for 2 months! Including the back-up costume.

This morning when I got home from work Katheryn told me that she wanted to be a clown today. I had just bought some face paint crayons, and thought 'why not?'
The kids thought it was great!
They LOVED posing for the camera.

I was saying to them 'say HA HA HA' and then they'd face each other and say 'HA HA HA'. Of course not looking at the camera!

Then Katheryn started to pick her nose. I said 'Katheryn, don't pick your nose.' Nick looks at me - gives me one of those smiles, and then the finger starts moving up...

Well they both thought that this was hilarious! (it probably did not help that I am taking pictures AND telling them not to do what I'm taking pictures of!)

It must be so great to be a kid. Clown faces, nose picking and silly, silly giggles first thing in the morning! (Actually it's not too bad being the parent either)

Saturday, October 29, 2011

Big Boy (tear!)

I know a little boy who is going to be 2 years old soon (2 weeks - eek!)
So Nick wants to show you what he got!

And when I see him on Katheryn's bed and how much he loves it, we knew that it was time.
The time for the Big Boy Bed.

You know, the one where they have a little more freedom. You can't just pull up the side rail and walk away, tell them to sleep but know that he won't climb out of bed. Nope, Kyle and I thought it was time to give Nick a little bit more freedom. To show him that he could climb out of bed if he wants to. A little independence.

Sometimes I feel like I'm the only mom who wants my kid to get into trouble. Yes climb out of bed in the middle of the night, yes grab that toy you want, yes hit your sister back (oops did I just write that).

So the Big Boy Bed is kind of major.
Katheryn thinks the bed is great! She gets to climb into bed with him, she gets to bounce on the bed with him. And he gets to bounce on the bed with her!

We came up with the best idea! How to let Nick enjoy his new bed, but still give him the freedom to get in and out with his limited mobility?
2 levels of bed. The top mattress is a twin/single. Which gives Nick lots of room. Then the foundation or boxspring is a double/full. So Nick's bed has a step! A built in step.

We actually had to order the mattress and boxspring separately so when we had the mattress we just put it right down. But we got the boxspring all set up - it looks great!

We are working on getting him to back down the step (with the plain mattress he was going down face first). And I'm hoping that the conductive education and working with the plinth (the wooden table) he is getting comfortable pushing down like that.

So far, so good. Nick has been sleeping well in it. We even let him sleep in extra the first morning so that he could wake up and get himself out of bed!
He's such a big boy! (tear)

Monday, October 24, 2011

A Face of spina bifida

Guess who was featured on Cassie's blog as a face of spina bifida!


Cassie asked us to write about what we wished we knew when we got the diagnosis.

I wrote about Happiness!
Something I've learned alot about!

Please take a moment to read about the other faces of spina bifida!

Falling Together

On a nice fall day, sometimes it's nice to just have a swing by the lake.

And some days there isn't anything better than having a good swing.

Maybe finding some treasure.

And learning something new.

 Going for a walk on the beach

 And having time to take it all in.

Some family time - even if none of the kids want to smile for the picture!

A great meal
(even if mom and dad forgot to bring the hi-chair!)

And a quick jump in the pile of leave is a definite must!

And ending the night with some moon watching.

And we'll miss the cottage until next year!
And be thankful to a great dinner with family.

Sunday, October 23, 2011

Sweet Music

Making their own music.
Playing together.

A soft touch, and some sweet music.

Saturday, October 15, 2011

Picture Perfect

In the middle of this past week of sadness, there was some bright spots, and (if I do say so myself) some beauty.

We got our pictures from Alana this week, in the middle of the madness. (check out Alana's blog to read what she thought too).

It was so hard to pick out some favorites. They are ALL favorites. I can't even say a first, second or third favorite!!!

So I'm loaded them all up on an album. (But I guess I am posting some favorites if you don't want to go through all 40 pictures)

It's hard to put to words how much these photos mean to us.
They are beautiful, but more than that! They are us!

It is forever, it is happiness and laughter all bottled up in print (or pixels)

I couldn't wait to put them around my blog, and now I'm just thinking of where to put them all around the house.
I just wish there were more of Katheryn. But I completely know that what Katheryn doesn't want to do, she doesn't do. So when she's 16 years old and asking why we have all these pictures with Nick and not with her - well, she liked to be with Alana, where the action was.
And she flat out refused to come and join us in the pictures. (hmmm, I wonder if I can photoshop her in this one?)

And when we did coax her out, she had on her 'I'm not happy' face!

The kids LOVED the chair! It was such a good prop!

Maybe too good of a prop!

And of course we got him in the walker! Alana was able to colour Rosie to more of a red-rose. Perfect!

AND, my most favorite picture (yes I do have a first). I couldn't wait to see how this turned out. I wanted it for my header for my blog. I kept my summer pictures up until we got this one! And then it wouldn't let me change the picture all week (I had to upgrade to add more photos).

(And I do want full credit for our coordinating outfits). You know how much time and effort I had to put into these outfits! I thought about it all summer, and we even  had alternate outfits depending on the weather.

So THANK YOU Alana, THANK YOU Helping Hearts!!!!! We had a fantastic experience and will have these pictures in our lives for a long, long time.

Friday, October 14, 2011

A Lost Grandfather

Grief, acceptance, remembrance, anger and love.

This post is not about spina bifida at all. It is about something that touches every life, and it has touched ours before, but this past week it did more than touch. This week cancer decided to knock us down and kick us in the face. And even if you know it is coming, even if you have been informed that medically there is nothing more to do, it just means that you`ve been squinting and ready for that kick, that hurt, that pain.
This past thanksgiving has been very unthankful. My father-in-law passed away after a lengthy battle with cancer.

You know, you hear that a lot; battle with cancer. But you don`t really realize from those simple words how much of a battle it is. And it`s not a battle, simple and over quickly. A clear winner and loser at the end. It is a war.
It is a horrible, ghastly war where you will use everything at your disposal to win. You will pour poisons into your body. You will need to prepare for the next battle. And it takes courage to fight. To walk into that hospital knowing you will feel worse before feeling better. And hoping that you will feel better.

Marty was diagnosed just after Nickolas was born. For the last 2 years we have seen him go through chemotherapy, surgery, radiation, we have seen PICC lines and hospital stays, ICU and ventilators and being told he probably won`t live through the night. Then miracles and wheelchairs, walkers,  therapists and a new normalcy. Before getting well enough to enter the battlefield again.
And it makes me angry! It makes me so angry that my kids will be missing their grandfather, that Kyle is missing his father, Marie is missing her partner, and we are all missing someone. I am angry that all of the plans he had to enjoy his grandchildren. Now he won`t have. It makes me angry, it makes me furious. And it makes me incredibly sad. It makes so sad to see how our lives have been changed, and everything that we will miss.
I`m not really sure where I`m going with this. Not all blog posts have to have a point. And I do write about the Ridding family, and we are missing an important part of our lives now.

This week we came together as a family. Nick had his private moments that made me realize that he has been touched by his grandfather. We were at the house, just the kids and me. Nickolas wanted me to go into the bedroom. So we went. We stood in the empty room, looked at the empty bed. Nick looked around and waited. He just wanted some moments.
Katheryn also knows that Papa Ridding is gone. I had to be careful with my words, I tried not to use `sick` - because what about when anyone gets sick. We talked about that he had to go away, and we are sad. But we can look at him in pictures.

At the visitation, we sat and looked at the photos. Nick perks up and says `Papa!` and points at the pictures. That makes me sad, but also happy that he has that memory, that both the kids had the opportunity to have memory of their grandfather.
I lost my grandfather when I was 4 years old. I have memory of him. In fact, one of my favourite pictures (which is also in our bedroom) is taken when I was a baby and it was Christmas (or Thanksgiving) and he`s holding me and I`m chewing on a turkey bone. I remember that I was not able to go to his funeral.

So yesterday our kids were at that funeral, and the funeral was full of sadness as well as the joyful sounds of children. Seems like a touching tribute for a proud grandfather.

Sunday, October 9, 2011

That word

They have used that word with my child. They are starting to think that it is time. It caught me completely off guard.

A wheelchair.
For my child.

My child in a wheelchair.

Yes I know why, I do. Independence.
But it’s still a shot in the gut, a slap in the face, a slewfoot. Can we give penalties and take 2 minutes? (Yes hockey season has officially started again – and my Maple Leafs are 2 – 0).

I see other kids in wheelchairs and the independence they gain. They don’t have to be with mommy all the time, they want something over there? They can go and get it. I know he will love it. I know it will be great for him.
I know all of these things, but for me, today, right now. It’s a wheelchair. For my child.

So let’s step back a sec.
Where did all of this come from?

On Thursday, we had our mom and baby sb group. We came home with a  castor cart (sorry, his jaguar). But before that Nick had been fussing, he is cranky and not feeling well. So I put him in his stroller hoping he’d fall asleep.

Now, Nick is a big boy. He is tall, he is big for his stroller.  He is also almost 2 years old. Do 2 year olds want to go wherever their parents want them to go? No way! They want to do things their own way, make their own mistakes and figure things out, on their own.
So put this all together, and the OT and PT at the baby group felt that it was time.
I am so lucky that I was a little pre-warned. Another mom heard what they were saying and warned me. Our group is 1 hour of parents, kids and therapists, then 1 hour of the parents leaving to talk about a specific topic. So at the end of the group when we discussed that when we meet next month we’ll look at getting him a wheelchair (it just makes me cringe writing that) I was a little bit more prepared. No tears, no sad face, I could put on my analytical, I understand and agree, face and not my emotional, mommy screaming not yet, face.

It was one day at group this year (When Nick was 18 months old) that it even occurred to me that he would need a wheelchair as a child. In my mind I was thinking 3 years old. That was my plan in my mind. That was my timeline.

I spent the entire drive home going over and over with myself why this is a good thing. Why this is actually a blessing. So I was prepared when I brought the topic up with Kyle. I was prepared when he asked the question that has been haunting me.
“Doesn’t it feel like we are giving up on his walking?”
No. Never.

I will Never give up on his walking. This is not about walking. We will still work just as hard on his walking, his walker, his mobility. We will concentrate on physiotherapy and conductive education and anything else we can get our hands on just as hard.
But, this is about his independence. Those times when he is in a stroller, just sitting there, being pushed around by mom or dad. When if he had his own wheelchair (smaller cringe) he didn’t have to rely on us. It would only be in replace of the stroller. It would not be in the house.

When we go to the mall, when we go to the park, when we go to the zoo. Can you just imagine how much fun he will have at the zoo?! Going where he wants to go, instead of being pushed around all day in a stroller or a wagon. I can’t wait!
Wait a second, did I just say that? I can’t wait to get him a wheelchair. I can’t wait for a wheelchair to give him independence. Did I just type/say wheelchair without the cringe? I want what is best for my child, and even if I have some hold-ups about a wheel chair – he won’t. He won’t see it as something negative (unless I tell him it is). He will see it for what it is – freedom.

Here are some kids that have really inspired me. And I don’t think I would be so calm about the wheelchair if they hadn’t gone first.
Carson (he is just a day or 2 old than Nick)
And I can look at some of the older kids
Like Caleb
And Madi

I am missing so many more. But for family and friends who want to see what a child in a wheelchair looks like, can look back. Because it is not sad faces and sickness. It is smiles and freedom all around!