Friday, November 26, 2010

One more painting

So. I loved the last 2 paintings that Janet (from Painting for Hailey) did for me, that I had her do just one more. This one is for my parents for Christmas. I sent Janet a picture I had taken of the boys playing with my dad at the beach this summer and this is what she turned it into. Isn't it amazing! I think it's my favourite one yet and am dying to give this to my parents...I don't know how I'll wait til December 25th!
And of course, she's placed a CP awareness ribbon on the painting...this time over my dad's heart. Love it.

I just had to do a post so I could show you this picture of Ben and "Sarah"! This is from this morning's Conductive Education session. They are practicing independent standing and ended up holding hands. How cute is that?
We are having just a fantastic week here. Doing Conductive Ed with a classmate is COMPLETELY different than doing it ALONE. Much more fun for Ben...and much easier on me too.
Sarah's mom and I seem very similar and both want our kids to do more Conductive Education with each other whenever possible so we're trying to coordinate schedules for the winter and spring sessions.
So there is definitely some more CE in our future!

Tuesday, November 23, 2010

Progress...and a friend "just like me"

Lately, I've been feeling like Ben's been making ZERO progress....I feel like all we're doing is trying to manage his spasticity for the last 6 months and that he's made absolutely NO GAINS in the gross motor skills area. I have been so discouraged. I thought by now that we'd be seeing progress in independent standing and maybe even and independent step or two. But nope. Nada.

Until today.

Until we went back for another week of Conductive Education in Halifax with the March of Dimes Canada.

Until he went right for the new set of canes they had ready for him and started walking around the gym (with a little bit of help of course).

I couldn't believe it. His core strength has definitely improved since we were here 4 months ago. And he's definitely gotten over the fear of falling.

I was beyond thrilled.

And you know what else? He even has a classmate this time. Let's call her "Sarah". She's 4 and has the exact same diagnosis as Ben...Spastic Diplegia CP.
And she moves and sits and stands...JUST LIKE BEN.
You should have seen Ben's face when she walked into the gym this morning in her walker. He was all grins from ear to ear.
I couldn't stop staring at her. She moves just like Ben. I posted this picture on Facebook tonight and someone commented that she sits just like Ben. It was amazing. Just amazing.
And Ben...well this comment to his Grammie pretty much sums it up "she has a walker JUST LIKE ME Grammie!!".

Tuesday, November 16, 2010

Do they really want to know?

I never know what to say to people when they ask me "how's Ben doing?" They are very pointedly asking me about Ben...because he has CP. But yet, I never know how to answer them.

Are they just asking to be nice? Or do they really want to know? I can never figure that out. I pretty much just say "Oh...he's doing great". And leave it at that. Maybe show off a recent picture or two.

Do they really want to know all the details of having a kid with CP?

I mean I could tell them that he's made virtually no progress in 6 months due to the vicious struggle we're having with his spasticity at the moment. We're in a constant round of botox and casting just to keep up with the status quo. We're supposed to be working on independent standing and maybe even an independent step or 2, but we're just stuck trying to keep him from getting so tight he can't even walk in his walker.

I could tell them that every morning Ben asks me "where are we going today Mommy?" because he knows that we're very likely going off to some appointment with some doctor or PT or OT.

Or do I tell them that I get this feeling that we're about to be referred to an orthopedic surgeon and that surgery scares me to death?

I don't know about you guys, but sometimes I wish there was a "special needs" handbook to help me navigate through this life I've found myself in.

Monday, November 15, 2010


Happy Gotcha Day Ben and Daniel!

Yep, 3 years ago today, we finally got to bring our boys home after 57 very long days in the NICU.

I've been reflecting all weekend about that time. It was a Thursday. And all week we'd been preparing to bring DANIEL home. Just Daniel. And then all of a sudden, Ben was pronounced "ready to go home" and we got to bring them home together.

We had training on how to use their pulse oximeters and oxygen. We filled prescriptions...many prescriptions and were given very explicit instructions on how to administer them. But you know what? We weren't one bit nervous. We'd been caring for these boys for 57 days...8 weeks and 1 day and we were READY. Ready to be a family.

And you know what else I remember? Even though they came home with "equipment", we really thought we were bringing home TWO healthy babies. I really thought we were in the clear. I had no idea that CP was something that couldn't be diagnosed til later. I didn't even know what CP was for that matter. So I thought my boys were going to be totally "normal"...whatever that is.

And you know what else? I'm glad I thought that. It was hard enough with 2 newborns that I thought were going to be fine. What would it have been like if I was worried that Ben might have CP? I can't even imagine how I would have gotten through it.
And when I think back, I realize how naive we were. Not just about the CP stuff. But about what life with 2 newborns was going to be like. And again, I'm glad I was. Because if I had known how hard it was going to be, I'm not sure I would have made it.
So we're celebrating "Gotcha Day" in our house. Not by doing anything big...but by reflecting. Appreciating how far we've come in just 3 years. I look at my two 3-year-olds and wonder how we got here. How is it possible that I now have 2 preschoolers? Who know their alphabet, can count to 10, know the names of at least 5 dinosaurs, and most of the planets? How did this happen?
I don't know how it happened, but I'm so glad it did. I am so grateful to have these 2 little boys.