Thursday, May 27, 2010

Family Photo Shoot

When we were in Florida, we had a professional photographer do a family photo session for us. I'm not sure how I originally thought of it, but it turned out to be a great idea to have our family photos done while on holiday. Plus...what a great way to capture the memories of that great time we had on our very first family holiday together.

Here's the link to the slideshow of our photo shoot. The password is cb050710 if you are interested in taking a look. The photos ended up being absolutely amazing...even though I thought the boys were a bit difficult and was actually a bit worried that we didn't get much of use.

The slideshow will only work for the next 7 days.

P.S. The other woman in the shots with the boys is our nanny. We like to include her when we get professional photos done since we consider her to be part of the family.

Monday, May 24, 2010

My coping mechanism

So. We're away again with the boys. We're in Halifax, Nova Scotia (just a few hours away from home). We arrived yesterday afternoon and will head back home tomorrow after lunch. Ben has his Conductive Education assessment appointment tomorrow morning. So we decided to make a little trip out of it.

We've been having a (mostly) wonderful time. We went on the Harbour Hopper tour (it's a tour of the city - 1/2 on land and 1/2 in the water) this morning. And then we spent the afternoon at Point Pleasant Park where the boys enjoyed throwing rocks in the ocean. One of their favourite pastimes lately.

I say MOSTLY wonderful because the crappy feelings keep sneaking up on me...just like in Florida. The reality of Ben's disability is so much more in my face when we're away from home. And this reality hits me when I'm not really expecting it. We're just going along and then I see Ben in his stroller while Daniel hops and jumps around and it breaks my heart.

But the point of my post is to admit something that I hate about myself. When I have these thoughts about Ben. These "poor Ben" or "poor me" thoughts, I have this awful way to make myself feel better. I think of children that I know (or know of) that are more disabled than Ben and think something along the lines of "well, at least he's not THAT disabled". I'm looking at that last sentence and I just hate to read it. I feel horrible. Is this a good way to deal with these thoughts? I have no idea. I really don't.
But it's how I deal. It's how I pick myself up and move on with the day. It's how I avoid dissolving into tears right there on the spot.

I don't even know if I should publish this post. I'm scared of what you all will think. I'm scared of your comments. Or that you may not come back here. Or that you might think that I'm referring to YOUR child. I will say that it's not usually any ONE child in's more like an odd mixture of a whole bunch of different children.
(P.S. I wrote this post about 3 days ago. I have read it every day since then trying to decide whether I should hit the "publish post" button. I'm still not sure if I should hit it, but I'm going to anyway. This blog has a few different purposes, but one of the main ones is to act as a diary for me as I deal with having a child with CP. And if this was a diary that no one read, I would publish this post. So that's what I'm doing.)

Wednesday, May 19, 2010

Hippotherapy Session I

Ben had his first hippotherapy session tonight. I was so proud of him. He did absolutely awesome. Even though he was a bit scared, he was happy to pet Cowboy and RIDE him! The session only lasted for about 20 minutes but that was enough for him. I could tell he was tiring. And I could tell why this is going to be so great for him....especially for his core strength.

Everyone involved was just terrific. There were at least 10 people there making sure that all went well for each rider.

After his session, he just wanted to keep looking at Cowboy (the pony he rode) and then wanted to pet him. Check out this adorable photo of Ben and Cowboy:

Here's Ben on Cowboy with Daddy helping out:

And here's a quick video of Ben riding. He doesn't really smile but he LOVED it!

He really didn't want to leave. He just wanted to keep petting Cowboy. It was great. And we can't wait for next week.

Friday, May 14, 2010

Videos from Florida

Hi all. We're back safe and sound from our big Florida vacation. It was actually WAY better than I even imagined. I managed to get over the negative feelings from early on and we all had a fantastic time. I want to write a complete post about our Holiday, but for now I thought I'd upload a couple of videos of the boys jumping into the pool...their new favourite thing to do! As you can see, Ben preferred to keep his mouth WIDE open when jumping in. No matter how many times we told him to close his mouth, he'd just open it up even wider!

And here's a video of Ben at the Fort Myers airport as we waited for our flight (2-hour delay). I couldn't believe what he could do! To me, this video just shows how motivating Daniel is for Ben.

Friday, May 7, 2010

A fellow CP mom posted this link on her Facebook page today. It rang such a bell with me especially since I basically just did a whole post on this idea. But this is WAY better than what I said.

Feelin' it

So. We're on our first big family holiday together in Florida. And mostly having a wonderful time. The resort is perfect for us. The pools and beach are really nice and the boys are having a blast. They really are.

But I'm struggling just a wee bit. In our normal life, I have to say that I don't really SEE Ben's disability that much. Yes, we have twice-weekly PT sessions. Yes, we lug his walker everywhere. Yes, I have to be very particular about what shoes I buy him. But his disability just isn't that big of a deal in our regular life.

Our home is very accessible for him. And we only go places that we KNOW will work for him...meaning he can use his walker or we're comfortable with him crawling. We really don't go ANYWHERE where he can't be somewhat independent. It's just no fun. The odd time that we have to go somewhere that doesn't allow him some independence just results in frustration and tears from him...and pretty much the same for us. So we basically avoid places like that.
His disability has been a bit more evident here. It's pretty great at the beach. He's happy to just w-sit in the sand and play with his buckets and shovels. He will do this for hours on end. Yes, I wish he could run in and out of the water like Daniel does, but he's having such a great time, that I don't really think about it much.
The pools though are a different story. At first I thought they were going to be great for him. The main pool has a side where you can walk in. And there is also a kiddie pool that is walk-in and has lots of sprinkler-type stuff. BUT. Yes, but. The bottom of these pools is very rough. You wouldn't really notice it but it is. It's perfect for making the pool non-slip...but far from perfect for a little boy who needs to crawl around on his hands and knees. He played in those pools the first day for a couple of hours. And ended up with very skinned knees and feet. It's 3 days later and they are still looking pretty rough. So that kinda sucks.

Plus, there's this really cute family here that we keep running into. They have 4-year-old boy-girl twins. Boy are they cute. But for some reason they are just serving as a reminder of all that we (and Ben) don't have and can't do. They are so cute running around and playing together.
So yeah. I've been feelin' the CP thing this week. And that sucks. I don't like feelin' it. I like it when all I see is what Ben CAN do, instead of what he CAN'T.

We are having a good time though. That's for sure. It's just that I've been feelin' it.

Saturday, May 1, 2010

As long as it's healthy...

I went to my cousin's baby shower this afternoon. It was a very nice shower and she got some really great gifts...many of which were gender-neutral since she and her husband have decided not to find out the sex until delivery.

This of course provided the opportunity for lots of discussion about what everyone "thinks" the baby is. Which I find hilarious. I really do think it's crazy that people really think they "know" the sex of the baby. Twelve years ago, my mother was so convinced that my brother's wife was having a girl that she had a closet full of girl clothes when my NEPHEW was born. She had to return everything!

This conversation ALWAYS leads to this comment "it doesn't matter what it is, as long as it's healthy". It's just thrown out flippantly...without any real thought behind what that means. And for some reason, it really bugs me. It's not the comment, it's the lack of thought behind it that irks me so much.

Today I wondered if the speaker (or anyone in the room) even thought about the fact that my boys "weren't healthy" when they were born. I concluded that maybe about 2 people in that room probably thought about that (even though almost all of them know about the boys' premature birth and Ben's CP). And it bugged me. I know I need to get over this, but for some reason, it really bugged me.

And I'm not even sure why. I almost feel silly posting this. I mean why on earth should someone's common-every-day-comment bug me so much?

I think it's because it shows me that they (as in the general public) don't have a freakin' clue how lucky they are to have a "regular" birth with the resultant "normal" child.

Another cousin of mine had a baby last week. The baby and mother stayed in the hospital ONE night and then went home. ONE NIGHT! And the baby went home...without medications...without oxygen or monitors...without numerous appointments already set up with neurologists / cardiologists / opthamoligists. I bet my cousin and her partner have not spent one minute thinking about how fortunate they are to have a "healthy baby".

And for some reason this lack of appreciation gets to me. I guess I just want them to really know how freakin' fortunate they are. And appreciate the perfect little bundle that they get to take home. And not just EXPECT to get a healthy baby...because many of us don't.

P.S. I hope that this post doesn't rub anyone the wrong way. After re-reading it, I realized that it may sound like I do not consider myself FORTUNATE to have Ben. And that is ABSOLUTELY NOT the case. I feel blessed every single day that I get to be Ben's mom. I really do.