Friday, June 5, 2015

The Inspirational Background to #JacobsHealingRooms

We didn't ask for this. No one does. When I learned I was going to finally be a mom, this wasn't anywhere close to the picture I had in my mind. To say that Jacob has been through a lot would be like saying "The Grand Canyon is big"; it just doesn't quite cover it. Anyone who hears his story, often asks me how I cope with all of this as a parent. There really is no answer to that, when you are not given a choice you just paste the smile to your face and keep going. Day by day you learn to adjust to the "new normal".

Jacob inspires me at every turn to be a better person and parent. Jacob has been so sick over the past 3 years, and yet rarely does he stop to think of himself. When he first got sick, June of 2012, he started to grow his hair to make a wig for kids with hair loss as a tribute to his grandfather who was diagnosed with cancer. Even when he tripled his weight on steroids and was bullied by others calling him a "fat lady", Jacob committed to making the lives of those around him better. He was able to donate a full 12inch ponytail at the Terry Fox Run in 2013. To be able to stand up for what you believe in, despite other people's negativity, is something not a lot of kids at 9years old can/will do.

When Jacob learned he needed surgery to remove his colon and would need to wear an ostomy bag potentially for the rest of his life, his thoughts weren't focused on himself. He turned and informed the surgeon that if they were removing his colon that he wanted to make sure that some good came of it. He made sure it was donated to research so that other kids would may one day not have to go through this experience. Needless to say, the story sends chills for a lot of people and brings me tears of proudness upon sharing what he's done.

Even when Jacob learned that he had officially exhausted all of the typical Crohn's treatment medications, he said that we still have hope because there is research being done, there are people out there who just as desperately want a cure for this disease. When we started on the Stelara injections, he even said "Why not let it be me who tries this out? If I have success maybe it will open the door to let others like me try it out and it might help them". He was right on one part; it might help them.

But no Jacob, there is no one quite like you.

When Jacob approached me with his #JacobsHealingRooms plan, I'm sure that everyone in the pharmacy line was staring at me as I had silent tears streaming down my cheeks. Jacob had asked for his Christmas present to be the ability to raise funds for Sick Kids Hospital to update the Outpatient Treatment Rooms and make them child-friendly. Jacob talks at length about how important the patient's environment is to healing and I would have to agree. There have been many hours spent at Sick Kids in the treatment rooms, staring at the blank walls. The rooms just feel so "heavy" when we go in. Jacob wants to change that. Jacob wants to make these rooms to be a place where even though you're getting an IV treatment and might not feel well, you still have plenty to do to distract you from all that.

Jacob wants this to be how he is remembered. He says "I only have one life and I might as well do something with it to make this world a better place". Yes Jacob, you have already made this world a better place. I couldn't be more honored to call you my son.

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