Moving on

So now that the decision has been made, and the process is starting for Hydrocephalus Canada, I have to look at what I am able to do.

Because when it is something I feel passionately about, I don't like standing in the sidelines. I want to do something.

That is how my facebook group started, when our parent group was cancelled. To try to keep the support network we developed with other families. And actually get to know people and families. Not just facebook friends who live in a different country. But actual support from actual people, who you might not meet... but you could. And Ontario problems and solutions and resources, which are different from what is the in the US.

We slowly started with about 5 people in that group. Now called Our Lives, with spina bifida - Ontario and has 64 people in the group. It's not the most active group, but people do post and comment and ask questions, and get help. I've actually met up with some people through the group at various appointments.

So now with another change, another break up, I have to look to see what I can do.

What can one person do? But what if it wasn’t just one person? I have talked with other moms who feel the same way I do. Maybe in the digital age of facebook and websites an actual organization is an outdated concept?

The original organization started 40 years ago as an idea, a need in the community, and probably started with a number of parents (or adults) who came together to form what was the SB&H. But I don’t actually know.

So if I am now looking at an idea, a need in the community. What do I want to see? What do I want to do to try to fill this need?

So what is my wish list? What do I want out of an Ontario Spina Bifida Organization?

1.      Networking is number one. Networking with other parents, with adults, with parents and with health professionals.

2.      Children’s books and resources. I love finding books that are appropriate to Nickolas (and Katheryn) and buy and collect anything I can find. I love(d) that the SB&H would send us new books and materials.

3.      Current research. What is out there, what is new. Is there anything that is interesting to us, impacts us, or can help to educate us?

4.      Research opportunities. Because that is just me, and I love participating in research

5.      Education.  Education opportunities, presentations, current research, healthcare professional experiences, sporting experiences or just anything that is educational. An opportunity to go to conferences would be wonderful.

6.      Community voice and presence. This would also go with fundraising, (which is not actually on my wish list, because this is just a wish and wishes don't need money) but it is more than that. It is the opportunity to show this is what spina bifida looks like, and show the community until it is just known.

7.      New parent support. I remember getting a care package when Nickolas was born, it was so helpful to have the resources (and knit hat and sweater) and know there was a community out there that cared about us.

8.      Ongoing support. More than just networking, but actual information and support. There is online material that I can find, if I know where to look. But age appropriate, what to look for, how to help. Something that complements what we learn every year

I have tried different ways to connect people in a community. To help people, but also myself, to feel connected and not alone. To know there are others who have done something similar, or be the person to help someone who is lost and not know where to start.

I have my person blog, my I want to learn about Spina Bifida blog, presentations to the college, facebook page, activity in other facebook pages, I have been with another mom when she had her baby (and I loved doing that, I wish I could do that for every new mom!), I’ve tried writing my own book (and I have a draft I’m working on). All of this to connect with a community, to see if something can get help by why I have experienced.

Maybe it is the nurse in me. Wanting to help. But I want to do something! I am just not sure what it is yet.

I have the facebook group, which gained 2 new members this month. I am always excited to get more people connected! I know there are more out there, but I don’t know how to reach them yet.

I have lots of ideas about how to move forward.

Do we start an organization connected with the Canadian Spina Bifida and Hydrocephalus Association, we are not anywhere near that right now. But as Hydrocephalus Canada moves away and creates a void, something needs to move in. Could I be involved in that?

Can we meet! Can we organize some type of event for as many spina bifida families in Ontario to actually get together and meet face to face? I have thought about this idea many, many times. At my annual SWWR I tried to connect with different families, but the most I had was I think 4 families at one event. Every time I think about it, the time slips away from me and then it is too late.

I’m wondering if I can beef up Our Lives, with spina bifida group. Add some documents (books, current research, research opportunities, links to presentations), a poll about what people would like to see in the group, dates and events.

• And I so want to do a video like the Shake it Off. But with Nick’s favorite song Anything, by Hedley … the clean version (which Jill had first suggested). I love listening to Nick sing “I can, I can, I can do anything”

I think now I have a couple of projects to work on, to try to direct my angry energy into a project

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 7^th annual SWWR last year, and had just set a date for our 8^th 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.
Dumped.