Saturday, 30 April 2016

A Wish Fulfilled

It was the most perfect of days - sunny, a light ocean breeze and smooth sailing ahead. A lot had to come together to make the day happen, and it was perfect that the weather cooperated to put the finishing touches on the day.

Making Zach's Wish come true wasn't a sure thing. We didn't know until a relatively short while ago that as kid with no diagnosis, he was even eligible for such a thing. We were so used to falling between the cracks in the system that it would never had occurred to us that Zach could have a Wish granted. However, not too long ago, The Children's Wish Foundation contacted the Rare Disease Foundation to let us know that they had changed their eligibility requirements. More children in our rare disease community were now eligible to be nominated for wishes. This news was greeted with great excitement by my friends and we cheered when one, and then more of our kids were approved for wishes.

We were honoured, but tried not to get too excited when a dear friend in our community nominated our 14 year old for a wish. Having no diagnosis and no clear prognosis meant that getting approved wasn't certain, and we didn't want to make any assumptions. We were beyond thrilled when Zach was approved to get his Wish fulfilled. It has been a really tough year and thinking of what to wish for was exactly what he needed.

The rest of the family tried not to lobby him too hard for what we wanted. And even if we did, have you ever tried telling a 14 year old what to do? In the end, Zach's Wish wasn't surprising. He's wanted to be a marine biologist since he was about eight or nine years old (before that, he wanted to be a 'scientist of everything').  Zach decided he'd like to go on a marine biology adventure. And not just any old marine biology adventure. I had been following a marine biologist on Twitter, David Shiffman (@WhySharksMatter), for over a year and sharing what I read with Zach and his 11 year old sister, Evie. The kids were hooked - stories of working towards conserving endangered sharks by catching, tagging and doing the coolest of science? What's not to love? Zach wanted to go tag sharks with David. I'll say this for Zach - he doesn't think small. Would Children's Wish Foundation be able to set that up? Would David Shiffman be available? Twitter had informed me that he was finishing up his PhD - he had to be a pretty busy guy.

Unbelievably, it all came together. Children's Wish Foundation is a spectacular organization that took care of us so well. They arranged everything to make our trip go smoothly and make sure Zach's physical needs were taken care of so that he could really enjoy his Wish. Amazingly, some of our family that lives in Florida and Alabama were able to meet us there for a little family reunion. David generously gave of his time and met with us for dinner before our official Wish adventure. Honestly, the kids were star struck. And to put the icing on the cake, there was room on the boat to invite our family along to do some shark science with us on Wish day. The only thing better than getting a Wish fulfilled, is getting a Wish fulfilled with family.

And that brings us to our perfect day.

We were team 1: My family (myself, my husband Tyler, our daughter Evie, and the man of the hour, Zach), my mom (Meema), my brother, José and his daughter Katelyn.

Pics by Jeff Palumbo -

We were told what our jobs were, how to be safe and what rules to follow. We needed to figure out which job each of us would do. I know I was feeling excited and nervous and happy. Would we catch any sharks? Would we be helpful? Would I screw up? Would I ruin the Science? We divided ourselves up into the jobs that we were allotted and waited for our chance to jump into the well oiled machine we intended to be. And hoped not to Keystone Cop our way through it!

We waited, hoping that at least one shark would be caught... because, you never know, you can't control nature.

When the first shark was caught, we sprang into action. It was a nurse shark! She was beautiful! We all did our jobs and I don't think we messed anything up. They coached us all through what we needed to do and this beautiful animal was released back into the ocean with minimal fuss. As she swam away, Zach threw his arms in the air and shouted "Wish Fulfilled!"

Pics by Jeff Palumbo -
A note from Zach: It meant a lot to me that Children's Wish & the SRC were able to do this for me.

Unbelievably, through the course of the day 5 different species of sharks were caught, 9 sharks in total. We knew something special was going on when the biologists on board were excited!

Pics by Jeff Palumbo -
A note from Evie: When I saw the first shark, it was like it was the day was done, I was so happy.
And then we saw so many more! 😃

Our family was thrilled to be part of the action and to be allowed to actually participate in the data collection activities. The best part was the intellectual and social generosity of the graduate and undergraduate students there, as well as the crew on the boat. No question was ignored and no inquiry was regarded as a waste of time. My young scientists' curiosity was rewarded with respect and enthusiasm. I can't say enough about what amazing role models the SRC team were to our kids. Their enthusiasm for their work and respect for each other and what I hope my kids have, whatever they choose to do in their lives. I'm grateful that Zach chose a Wish that had such an impact, not only on him, but on his sister and his cousin as well.

We don't know what the future will hold. Honestly, who really does? But this trip let our family do what we enjoy most together and what has become increasingly difficult lately. We had an adventure. We were outside together, experiencing something that was totally new to all of us and learning together. We had the joy of discovery and had it as a family. Zach's Wish to take part in shark science research was a welcome break from a daily focus on healthcare management. It was an injection of fun and curiosity and excitement that I think my kids deserved.

We are incredibly grateful to the Children's Wish Foundation, and especially to our Wish Coordinators, Lindsay and Karin. We are grateful to our Rare Disease Foundation family for thinking of us and nominating us. We are also so grateful to David Shiffman for being available for questions and interaction, especially at such a busy time in his life. We were so lucky to meet the amazing scientists from the SRC lab on our boat trip; Leila, Julia (go Canada!), Natasha (viva Brasil!), Emily, Jake, Tim, Kevin and Jeff. And of course, the amazing Captain Eric and first mate Nick who took care of us on the water.

We were told from the beginning, that there was a chance they might not catch any sharks. It doesn't happen often, but it can happen - people can't control nature. We were unbelievably lucky on our Wish day with the number and variety of sharks caught. But what really made the day were the people, all the people, that came together to see Zach's "Wish Fulfilled", thank you all.

Pics by Jeff Palumbo -

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