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is an outdated concept?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
