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!

Friday, March 3, 2017

It’s not you, it’s me…

Read this first. My Association wants to Change... about how the Spina Bifida and Hydrocephalus Association wanted to change to Hydrocephalus Canada...

It's not you, it's me...
That is how it feels. Like I have been dumped. Actually worse, like my son, my family has been dumped. Because of spina bifida.
Because it is not a ‘hot’ disability anymore?

Because there are people more important?
Because supporting him is too costly, or doesn't make enough money?

Because, because, because!
I am so upset. And angry.

The motion that I wrote about last month was passed. So my organization, the Spina Bifida and Hydrocephalus Association of Ontario, will transition into Hydrocephalus Canada. With a national, hydrocephalus focus.
And that is it then.

This is an organization I stood with for the last 8 years. A relationship I cared for. Either as I received their Current Magazine, sold their calendars, fundraised for them, utilized their resources and connected with individuals, but also as Nick was on their website multiple times, in their resources, Current Magazine and invited to speak. It was a relationship that I cared about, and I felt that it was a relationship that cared about our family.
  • It was also a relationship in the form of a representative who is at almost every single spina bifida clinic, meeting new families being there for a chat and really is the person I picture representing the association. Shauna, as the face of spina bifida, for us and so many families in Toronto, will continue to be a permanent part of my spina bifida community, separate from the direction of the organization she has represented for us.

As the Spina Bifida and Hydrocephalus Association of Ontario converts into the Hydrocephalus Canada there is a gaping hole regarding spina bifida families in Ontario. This is an organization that has existed to help families with spina bifida and hydrocephalus for 40 years.
I’m having difficulty getting over the break up. I had thought more provisions would have been made regarding those left behind. The spina bifida community. A plan for them, for us. A new connection with the Canadian Spina Bifida and Hydrocephalus Association (Hydrocephalus again… at a national level… ). Or even a discussion regarding support for the spina bifida community. I just have a promise that they will continue to support who they are supporting now.
But I am just a member, with just 1 vote.

The Spina Bifida Association of Canada is an umbrella group (with a really horrible website… half of the links don’t work). Even after I contacted them for more information about support in Ontario, I was told to call someone else and given their phone number. So there isn’t any big support waiting there.

I’ve attended yearly general meetings, supported their initiatives, participated in their fundraising. I have been recognized by the organization for the support, and have talked at their golf tournament even about the organization. I have been able to connect with individuals with spina bifida and show Nick he isn’t alone.

We had our 7th annual SWWR last year, and had just set a date for our 8th fundraising event. All to support SB&H.

Looking through my blog for the things I have done is just making me angry.
No, I didn’t do any of those things just for them. I did it for Nick. To show what spina bifida looks like, to raise awareness and to fundraise last. And yes I can continue to do that. But it will be different. I liked doing the walks, and last year we didn’t walk, because Nick had just had surgery.

The walk was an event I organized for a reason, and we fundraised for a reason. Otherwise why do we even bother. Why take a day out to walk, who cares, it is just me wanting to drum up support. Well, there are lots of things to support and without the organization we won’t do it. And fundraising. There are many, organizations to fundraise for, organizations that have helped us.

Sick Kids, Grandview, Easter Seals, March of Dimes, Holland Bloorview. All of these organizations have made changes in Nickolas’ life. But I don’t fundraise for them. Or do I stop fundraising for them and fundraise for us. For a door into the house, for specialized camps, specialized lessons, hippotherapy, different toys and aids to help move around.
But no, I have stood by the Spina Bifida and Hydrocephalus Association of Ontario because they represented us. Spina Bifida and the unique challenges and questions and life experiences that come with this complex condition.

Through this we were able to connect with other families, and had the backing of an organization as we showed what spina bifida looks like.
Now, it just feels like we weren’t good enough, strong enough, worthy enough to continue to support. As the organization now focuses only on Hydrocephalus.

I don’t care about hydrocephalus.
I know that is anger talking. But seriously, I don’t care about it. It doesn’t impact day to day.

The hydrocephalus was caused by spina bifida, so while I care very deeply about Nick’s shunt and the impact the shunt and hydrocephalus has on his brain and education, I don’t see it as hydrocephalus, I see it as spina bifida. Just another spina bifida thing. Like the bladder, bowel, chiari, braces, surgeries. All part of the spina bifida.
So hydrocephalus is important, but I have no interest right now with a purely Hydrocephalus Association.

So that is where I am, with Hydrocephalus Canada.

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