
Five years ago, I did a post about Halloween costumes for disabled children, and I thought it might be time to do another, but that rabbit hole led me to this remarkable young man and his lovely family. The Halloween-themed stuff will have to wait until tomorrow.
Meet 10- year-old Connecticut resident Sam Buck. Sam is slightly more awesome than other children his age, because he has to be. He suffers from suffers from Vanishing White Matter Disease (VWM), also known as Childhood Ataxia, a very rare brain disease that progressively affects the nervous system and causes the neurological system to deteriorate.
Sam lives with his parents and his sister and brother, and honestly, they’re all pretty amazing. Sam’s mom, Allison, started using social media to spread information about her son’s condition shortly after he was diagnosed 8 years ago, and she’s been hard on it ever since.
“Today’s Sam-ism, “I love being disabled. It’s so fun! Fun, fun, fun!” Said no one ever, except Sam.
– Sam vs VWM Blog
“People wonder how we can cope day after day with a seriously disabled, terminally ill child. This is how. How can we get upset by Sam’s limitations if he doesn’t? His perspective is so unique, it allows us to be grateful for just being, so much more than we could have been without him. We are so fortunate for the daily reminder to enjoy every moment, especially when it feels like the world is falling apart. Only one thing is certain, every day we are all together as a family, every day we get with Sam is “fun, fun, fun!”
There are some deep lessons to be learned here. May they all keep fighting the good fight for many years to come.
You can follow Sam Buck on his blog right here on WordPress and on Instagram and Facebook. You can also read Sam’s whole story, learn more about VWM, and find out about donating on ULF.org.
October 25, 2020 at 6:33 am
Heartbreaking but uplifting too
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October 25, 2020 at 9:17 am
Yes! Exactly. To see a family carry such a heavy load with such grace is a real inspiration.
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October 25, 2020 at 9:24 am
Oh, what a mother’s love can do for a child. Just look at his smile and joy.
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October 25, 2020 at 1:22 pm
I think they do that for each other!
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October 25, 2020 at 10:04 am
Super Mom for sure and very talented too.
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October 25, 2020 at 1:22 pm
Indeed!
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October 25, 2020 at 2:47 pm
I wish the news were full of the Sams of this world. Maybe then we could put our own lives into perspective and learn to live the way Sam and his family do. Thank you for a truly wonderful post.
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October 25, 2020 at 10:57 pm
Thank you! He’s exactly what I needed, too.
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October 26, 2020 at 4:17 pm
I hope that the one lasting change from this pandemic is that we re-evaluate what’s important in our lives, and live /better/ going forward.
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October 27, 2020 at 3:01 pm
That would be a powerful silver lining.
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October 27, 2020 at 8:56 pm
Let’s hope. 🙂
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October 25, 2020 at 2:50 pm
Reblogged this on Meeka's Mind and commented:
Social media seems to be full of people asking why we should all be locked down during this pandemic. The answer is Sam, Sam and his wonderful, inspiring family who demonstrate each day what courage and love truly mean. Meeks
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October 25, 2020 at 3:58 pm
I am a huge supporters of Danny Thomas St. Jude’s children hospital is Memphis. They have heart breaking stories everyday. Also, they have made huge advances in finding cures for some of the children there. I hope they will continue to find cures and maybe some day there will be no Sam’s sad stories. Hal
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October 25, 2020 at 11:00 pm
St. Jude’s was my mother’s favorite charity, and I’ve been donating to them ever since she died. Such a great cause!
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