I believe it was Mr. Rogers who said, “When I was a boy and would see scary things on the news, my mother would say to me ‘Look for the Helpers – you will always find people who are helping’. Well, when our life was a little scary, I could look out and see a sea of fezzes – all volunteering their time to help people like us.

Let me go back a bit and tell you about our ongoing adventure. In 2010 our amazing son Benjamin was born. Both my husband and I were crippled with fear during those first few days after his birth. We knew something was wrong, but we didn’t really know what. Doctors told us to ‘wait and see what happened’. We didn’t want to hear that – we wanted to hear ‘everything is going to be fine’. The omission of those words terrified us.

Our little ball of joy did manage to survive then next few hours…then the next few…and so on and so forth. His first few days of life were inundated with a busyness that no newborn should ever have to endure….xrays, ultrasounds, bloodwork. On our tenth day, after staying in two hospitals, we started sorting out some of what was wrong. Ben was diagnosed with something called Goldenhar Syndrome. It is also called oculoaruiculobertebral syndrome, but I only say this after a few glasses of wine when I’m trying to impress someone. This is just a fancy way of saying he has problems with his eyes, ears, and spine.

Well…his eye hasn’t really been much of a problem. He has a cyst on his right eye, but wearing glasses when he was little and pirate patching his eyes for a few years seems to have worked.

I’m not sure if he will have surgery on his eye one day…we have gone through a host of eye specialists and each has a different opinion. His ears….well they are a bit misshapen, but they are super cute. He really LOVES the small one…any talk of surgery on that ear and he grabs it and says “don’t touch my favourite ear!”.  But along with these misshapen ears, we have significant hearing loss. His hearing is a bit of a problem, but we work with a team of audiologists to make sure he has access to everything he needs to make his life easier at home and school.

Then there’s his spine – the greatest source of my worries to date. It was apparent in our first six months that Ben had a crooked neck. At first I thought it was muscular and oh my….did we stretch that little neck 5 times a day. I believe it was about when he was six months old that we discovered through a CT that it was his bones, not his muscles.

I knew of the Shriners from circuses and parades, but I had no idea what they really did until one of my friends Kim called me one day and told me there was a hospital (or a bunch of hospitals I found out) that dealt with kids with all kinds of spine and bone issues.  I was pretty surprised and I started to do a bit of research. I contacted my local Shriners and within a few short weeks we were flown away to a Shriner’s Hospital with a tonne of local support.

To make a long-story short, we didn’t get immersed into the Shriner’s Hospital until our local team of doctors were planning for Ben’s surgery. We had numerous meetings and conversations about what we would do. Finally, one day Jesse and I were called in and they told us they weren’t sure what to do. They knew Ben needed surgery, but they didn’t want to do it as it would involve his complicated cervical spine. They began looking for specialists across the country, Shriners being one of them.

One of their surgeons came to Edmonton and had a look at Ben’s file and his myriad of x-rays. Within a short amount of time, we were flown out to Shriner’s Hospital in Montreal. The Shriner’s hospital is an industry leader in pediatric orthopedic care. We go to the Montreal Shriners Hospital regularly now and are incredibly grateful for the care we receive. Our Al Shamal Shriners in Edmonton and other Shriners groups across Canada donate significant amounts to keep our hospital going. The Al Shamal Shriners personally help us to make access to across-country medical care simple – they pay for our flights, meals, transportation…you name it. They want us to focus on Ben’s medical care – not worry about expenses.

With Shriners in our lives, we have access to two families….our local Al Shamal Shriners family and our not so local amazing Shriners Hospital family. Through this journey, I have had the opportunity to connect with a tonne of parents who are recipients of the generation donations of their local Shrine as well as the amazing medical care offered by Shriners Hospitals in Canada and the US. Every conversation with parents reflects on the gratitude they feel for having Shriners in our complicated lives. Thank you Shriners for all you do to provide exceptional care for children.