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!

Tuesday, September 13, 2011

Helping Hearts

I learned about a wonderful Canadian organization back in June. It's called Helping Hearts and it provides a free photography session to families of children who have had to overcome/or are dealing with life threatening illness or permanent disability.

We already have some SB stars on their website!
Gage
Alejandra
Emmett
Layla (I don't know Layla's family, so I hope it's ok for me to link to her photos - it is public and says she was born with spina bifida)

These pictures are beautiful and amazing and breath-taking. And the stories that go with them melt your heart! I was a little hesitant about applying, Nick's life is not threatened, and sure he has a permanent disability, but...

In the end I decided to apply for a session.
To apply you fill out a form about your family and your child.
They ask questions about your experience with your family. I thought that I would share my answers:

TELL US ABOUT YOUR FAMILY AND THE CHILD WHO ENCOURAGED YOU TO APPLY FOR THIS SESSION:
We have 2 children, Katheryn who is 3 years old and Nickolas who is 19 months.

We found out that Nickolas would be born with spina bifida and hydrocephalus when we were 22 weeks pregnant. When we got the diagnosis we were encouraged by doctors to terminate the pregnancy, we were told he would have poor quality of life and it would have a negative impact on our daughter's life. We investigated what living with spina bifida meant, and found this outlook to be very negative and incorrect. We were lucky to have family and friends who supported our decision. The pregnancy was very hard, not knowing how he would be, having a range of possibilities we might encounter. When Nick was born he had his first surgery at 24 hours old and spent 2 weeks at Sick Kids. He his since had 2 additional surgeries for a shunt insertion and repair.

From the moment we brought Nickolas home, my daughter Katheryn said he was hers. They have been almost inseparable ever since. They want to see each other first thing in the morning and last thing at night. Their relationship and how they relate to each other is amazing.

Nickolas is facing mobility issues, he has his own timeline about when he will do things. But he is moving forward. Alot of the things we were told about when I was pregnant are very manageable. Nickolas is a happy and healthy little boy. He just needs to work harder for some things.

 DOES EVERYONE IN YOUR FAMILY KNOW WHY YOU ARE PARTICIPATING IN THIS PORTRAIT SESSION?
I haven't heard about this program before.

The pictures that you have on this site are beautiful. We have done other portrait sessions, but many photographers do not seem to understand Nick's special needs or to be able to work with what he can do. Or to show off aspects of his life that help him to move, instead of hiding things that make him different. (I'm not sure if this makes sense).
I am very involved in showing Nickolas and sharing that he has spina bifida. That 'this is what spina bifida looks like'. To try to educate others (family, friends, strangers ect) about spina bifida and what it means. That it isn't scary, that it isn't a mistake, that spina bifida is a part of who Nickolas is.

WHAT HAS BEEN THE TOUGHEST PART OF YOUR JOURNEY SO FAR?
The toughest part right now is not to look at Nick and compare him to other kids.

It is sometimes difficult to see how much harder he has to work to do things that come so easy for some kids.

WHAT HAS BEEN THE BEST PART OF YOUR JOURNEY SO FAR?
Nickolas.

Definitely Nickolas. He has opened up a whole new world for me and my family. We can appreciate things we took for granted before. He does not know he has challenges, he does not know anything is different. He is who he is, and he is fine by that.
He is happy and easy going and I wouldn't change him for anything. So the best thing about our journey is that we have him.


IF YOU COULD HAVE ONE WISH, WHAT WOULD IT BE?
I could wish that Nickolas didn't have spina bifida. And that, that would make our lives much different from what they are right now, easier, less worry.

But I actually don't wish that. If Nickolas didn't have spina bifida he wouldn't be my Nickolas, he wouldn't have his amazing strength and determination and make our family the way it is.
So I don't wish that.

I wish that more people know about spina bifida, that it wasn't a bad word. That people (public) were more accepting about disabilities and differences. I wish I could show off my beautiful child and say THIS is what spina bifida is, not diagrams and numbers and statistics and medical jargon.

http://helping-hearts.ca/

About 2 weeks after I sent my application form in. I was contacted by an amazing local photographer, Alana McClure. She called me to talk about what it was that we wanted, and we talked for 20 minutes! We discussed different things that I thought I wanted, and she sent me a questionnaire (that took 20 minutes to fill out). Asking about the kids, what kind of pictures we wanted, what we liked out of her own work, etc. One thing I really wanted is to have our photo shoot outside.

And both of us are incredibly excited to work together!
Our earliest date was September.
Which was good because even though I wanted to do things right away, the waiting meant that we had Rosie with us. (Rosie


September finally came!
We had a meeting last week with Alana to talk about what we wanted and all get on the same page. Also to get the kids more comfortable with her (Katheryn especially, is notoriously difficult to photograph - crying and throwing fits).

Some things I wanted was to have Nick's walker in some pictures, to have family pictures, but also the kids together and alone. I also really liked some shots that she had in her portfolio.


I spent ALL SUMMER trying to figure out what outfits we would wear and how we could all coordinate (Jill you would have been so proud). Notice Nick's plaid shirt, notice how it has 3 different colours...
Both Kyle and I commented to each other today about how different today's experience from other photographer's we have gone to. We worked around what Nick could do, and actually had him working for some of the pictures. No sitting down and looking pretty! Upright and showing off!

What I wanted out of this experience:
Family photographs where the photographer won't want basic sitting, standing etc pictures. Ones that will show off Nick's abilities and how he has achieved these! No hiding equipment, it is not something to shy away from, to hide, to be ashamed of.
Yes Nick has spina bifida, yes that is why we qualify for this. Yes it is a great program, but look at our wonderful family. We haven't suffered, we celebrate ourselves and our own abilities!

3 comments:

  1. OOOOH! When can we see the pics from the session??!!

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  2. I AM so proud!!! LOL! I can't wait to see the pictures. Your application was absolutely beautiful. Such an amazing literal picture of Nick. :)

    ReplyDelete