Speaking about Our Life

Growing up I never thought I would enjoy talking to a classroom full of people. I hated public speaking, and in elementary school I would do anything not to have to talk in class. It didn’t really get better in high school or through my various degrees.

But put me in front of a class and let me talk about our life with spina bifida. I don’t even need my notes! Or PowerPoint slide full of informational and very cute pictures.

I’m lucky that I have this opportunity. (I hope everyone knows Milo - my ninja seal)

My mother works for Centennial College in the RPN program (where I have also had a placement – and where I might eventually want to work when I’m sick of hospital life). But through this connection I have been offered various opportunities to talk to classes about spina bifida. I’ve talked to PSW and RPN classes as well as OT/PT assistant classes.

And I love it!

I’d do one (or two) every semester if I could. I’d talk to different schools, different classes. Anyone who is interested.

I also ask if anyone has heard about spina bifida before, or knows someone who has it. I say it is the leading permanent birth defect in North America. I say that it is what folic acid helps to prevent (very quickly followed by not 100%, but it helps to decrease).

I start of talking about our D-day, how we were told the diagnosis. Then Nick’s birth. I talk about what spina bifida is, as well as hydrocephalus, Chiari, all those other pesky diagnoses. I talk about the surgeries (closure and shunt) what the lesion level might mean to walking, our team, our equipment, what walking aids there are and what we are using. I talk about our family and where we are now.

I answer questions. I hope I’m not too medical or scary. That’s why I like pictures so much.

I always have Nick with me; sometimes I have Katheryn with me as well.

I hope the students get something out of it. I hope that if one of them gets a similar D-day (or knows someone) they will think of how great Nick and we are doing and not be afraid.

So even with my busy schedule I always make time for these classes. I have ideas to approach other schools – or maybe even my own hospital/doctors about talking. If anyone is interested – please don’t hesitate to contact me
I wish I had a picture here to put with me and Nick talking in front of a class – maybe next time I’ll get someone to take one.

Mommy the Educator

I find myself in a great position to get some valuable information out about spina bifida.
And I LOVE it!

I just returned to work last week, I work as an obstetrical nurse in a labour and delivery unit. Being back at work I have everyone asking me how Nickolas is doing. I wanted to be able to say more than just "great". Which he is donig. Every milestone is dependant on walking that I wanted to be really sure that I didn't talk about what he wasn't doing. Nickolas was very nice and started to army crawl, so I could talk about what he was doing.
I had a couple of people (who didn't know about the SB) ask if he was walking yet. "No, not yet, it'll still be a while, he was born with spina bifida". Then I get the sad face, and 'I'm sorry', I am much more able to say "Don't be, he is such a happy baby he doesn't care if he has spina bifida." And Nickolas will walk, just not yet.

A couple of times I find myself educating other health professionals. And having them learn something. I only hope that the next time any of the obstetricians I work with have someone who's baby is diagnosed with spina bifida they will think of Nickolas while they give out their predictions about quality of life.

But I've had other opportunities to educate as well.
I got to speak at a college to a group of PSW and RPN's about our life with spina bifida. I explained about spina bifida and all of the stuff that goes with it. Most of the material I got from my other blog http://www.aboutspinabifida.blogspot.com/ and then just talked about it. About our life and how things were, our day to day, the fact that Nickolas has all of these diagnosis' but he is still healthy and our lives have changed but not drastically.
Everyone was very interested (of course - attendance was mandatory) and they asked alot of questions. I was very happy that I had the opportunity. AND we all wore our REDEFINING SPINA BIFIDA shirts.

They also got the see the kids in action. The good thing about being a guest speaker is that certain things are overlooked. Like having a 2 year old running around the classroom, and doing half of the class with a 1 year old in your arms. But this is my life, hectic but enjoying ourselves.