Well the day came that we made a brave choice to step outside of our safest little bubble (thank you to all of you for being there for us all along) and take steps forward.
Bennett has chosen to walk and fundraise to raise awareness and funds for muscle diseases. We will be walking October 7th in Calgary as a family at the Walk & Roll event. If you want to join us, please feel free, the more the merrier. The walk is organized through the Muscular Dystrophy Canada and all the funds go toward breaking down barriers for the neuromuscular community and also to fund cutting-edge research. We don't know yet at this point in our journey, if or what barriers, medications or supports Bennett will need. This is a really positive thing because it means Bennett, for now, is doing really well and his support needs are low. There are lots and lots of kids just like him that already need a lot of support, we will walk for him, but also we are walking for all of them too.
In order to fundraise, we talked about lots of different options with Bennett so that we allow him agency over telling his own story. To our surprise, Bennett decided to openly share his condition. We made damn sure he understood what all that meant and that people he might not know would know something unique about him. Consent has been and will continue to be so important to me, so this step felt crucial. How far the reach was and how much we raised mattered far less than knowing he was comfortable in sharing his story with others. I shouldn't be surprised by this but once again he very clearly and confidently lead the way, teaching us that being open is the way to go, because it is the only way to have support and after all there is nothing to feel shame about, this isn't a dirty little secret we have to keep.
It has been less than a week since we shared that we are fundraising and he shared his story in his words. I can't even describe what this week has been like. The amount of support, kind messages, and donations that have rolled in for our little boy and our family have been overwhelming. I have been moved to tears several times and we feel so cared for.
Over a year ago, when this all started, I would have never believed you if you had told me we would be open with others about this story. Those closest to me know, I was consumed by needing to maintain his privacy. It felt WAY too personal and raw to share with others. Our parents knew, a few close friends, eventually some extended family and that was it. I thought it might always be that way. Then slowly, through hockey and school, I realized in order to get the best support for him, we needed to be more open and at the very least let a few carefully selected people in. We very cautiously told the guidance counsellor and then the teacher and then made a little cheat sheet to share with hockey coaches. That was a huge step in opening up. It felt really hard. Now I see, it was the step that had to come before this one. Not surprisingly, everyone was really great about it and that settled my nerves that it was okay that we had opened up a bit more. Keep in mind, we now live in a VERY small and VERY tight knit community, so privacy is generally something you have to protect if it is important to you.
The decision to walk and fundraise in the Walk & Roll this fall made us confront and rethink how open we wanted to be with others. I'm not going to lie it has been hard and vulnerable to share this week and I keep looking to him to see if we made the right decision. When I do, I realize he hasn't bat an eye. I have overheard him telling friends his story. He has proudly shared about the fundraising with his teacher and we are in the process of organizing a class fundraiser with her support. This week watching him respond to the support we've been given has taught me that I don't need to hold my breath on this. It is exactly as it should be. No secrets, no hiding, no big deal.
The other day we were talking about research and medicine and I asked, "Bennett, if you could magically make this all go away and not have this disease, would you?" His response hit me right to the core. He looked at Gary and I in the eyes and very matter of fact said, "Nope! I like who I am and I wouldn't want to change it. I am kind and I am sweet, and I wouldn't want to risk being any different than I am. I am unique!". There is was, plain and simple, total acceptance. I am working on getting there too. Sharing more openly this week has been a big step toward owning this part of our family's story. This whole journey has been so hard, but he is showing me that hard and different doesn't mean bad. Thank you for lifting our family up and for accepting us just the way we all are. My heart is filled with gratitude for this little village we are building around us.
If you want to support Bennett's fundraising efforts please feel free to walk with us or make a small donation.
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