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!

Wednesday, June 8, 2011

Our community - part 2

I don't know if anyone remembers that I made a post about our community last year some time. It was long and talked about all of the great moms and families out there.

When there is some news that really hits our community it is great to be able to be a part of that. For example when the MOMS study came out, and when the Paul Reiser show started (with an actor with spina bifida), as well as spina bifida in different plot lines on TV. And of course there was Shea, our Shea  - who just met his forever family (yay) and has officially been adopted! Shea Matthew Kulp!!!. A face, a mission and a miracle.

Yes this is a community of people where we share a diagnosis. But it goes beyond that. It goes beyond shared experiences, an understanding of exactly where you are right now. It's more than hopes and dreams and fears and nightmares and days where things go right and days where things are boring and nights are long.

There are many people that I refer to as friends. I have a friend who's child used this, or did that... Most recently it was, I have a friend who's son is going to be born with spina bifida. No, we hadn't met in person. We 'met' on the baby center forum, talked through there. Talked on facebook and BBM. Technology is amazing!

And then I found that I had something that I could offer. I've been in this game for almost 2 years, I may not be an expert, but I am a mother, and that is as close as you get to excellence! I am also a labour and delivery nurse and come from that knowledge background as well.
So I offered myself to this member of our community, who I had never actually met before, but really felt I knew. I offered to be part of her support in labour, to be there for the birth or however I could help.

I was very excited when she said yes. It was almost as if I could give back to everyone who had helped me. Or to Pay it Forward. Alot of time we feel powerless, but this time I was able to have some power, support and knowledge.

I have to say that the waiting room is a horrible place to wait! But it is worth it! I am not going to post any pictures or information - I'll leave it to Shayna to brag about her son (and how great they are all doing). I was able to be there and ask questions and offer support and the knowledge of my own experiences. Almost like a What to Expect, When Expecting a Baby with Spina Bifida.
And I had alot of fun doing it!

With my amazing experience I wanted to just talk about our community again. How much it means to me, and how proud I am to be a part of it.

People in my life have heard me talk about our community. Different moms and who is doing what. Sometimes I wonder about mom's who don't have access or knowledge that there is a community out there. Moms who aren't online. I would love to connect with more and more moms. In person, online - I love it!
I'm trying to get a mom and baby group with some moms that live in my area (we have 3) and I'm always wondering how to let people know that I'm here, I'm waiting to meet you! And I'm not the only one!
Just last month another of my spina bifida mommy's (because I've called rights for all of you!) Jill posted something very similar.

How to connect, how to grow our community?

I don't have an answer. Except to be out there, be visible, be verbal, be brave.
I have a bumper sticker on my car - I love it! It reads Someone with Spina Bifida Makes Me Proud, Everyday.

I've also recently connected with another mom who just got a lipomeningocele diagnosis for her baby girl. She was referred to me by a family member who knows how involved I am in all of this. I was glad I was able to offer some support and some good websites. I remember how dark those days were just after finding out!

Our mom and baby group has wound down for the summertime. Which is really lousy because I look forward to connecting at those monthly meetings! But we've all exchanged infomation, and will hopefully be able to organize some things in the summer.

I have some brainstorming ideas of how to make our Ontario community closer. When I have the time and energy I will hopefully pursue some of these ideas. Meetings? Baby groups? Zoo trips or visits? Connecting with out-of-towners? Local Rehab Center, Local SBHAO chapter? Not sure what my steps should be.

But - exciting for us!! We are going to be able to get together with Jill and her family this weekend. We get to meeting little Kingsley! (Yes you can all be jealous).

It's really nice to sometimes be part of something bigger, and know that you are never alone!

I'm really sorry if this post doesn't flow very well - I actually started it 3 weeks ago, and just hadn't 'polished' it enough. But I still wanted it done and posted. So here you go!


  1. So glad Shea's adoption has been finalised!
    Go you for reaching out and helping others :) I'm so happy to be online, there is so much support here. And yes - I am so jealous you are meeting Jill and Kingsley, I would love to meet all of you! Maybe one day :)

  2. I love hearing how we are all connecting and reaching out - giving and receiving support. :) It's fantastic! I do the same with with "one of my SB mom friends this n' that" all day long -and there are like dozens of you guys so people usually get tired of hearing about it! lol. I wish you Canadians were coming out to Cali in a few weeks - I'd have loved to meet you!!

  3. I am so excited to meet you tomorrow!!!! We need to find a way to make Ontario smaller so more of us can meet. Bring back the old days when local chapters DID more. But in the meantime, I'm so glad we have the Internet. I have to laugh a bit whenever I say "I know this kid with SB, he/she lives in Ireland/Georgia/Texas/Florida, etc. ..." :p Yeah, I'm just that worldly ;)

    See you soon! :)