‘I’ve received comments that I shouldn’t share Christopher’s life online because he can’t give consent.’: Special needs mom urges ‘his life is worth living’

“I’ve received comments that I shouldn’t share Christopher’s life because he can’t give consent. Now, these comments usually come from someone who isn’t a follower, because if you’ve seen any of my content, you’re well aware I do my best to share in a genuine and respectful way. And always from my heart.

I want to acknowledge I understand this thought, but at the same time, I’m not going to stop.

Here’s my two cents. If I hide him away, and if every other parent of a disabled child hides their child away, when is there going to be an opportunity to educate? Where is the inclusion? Where is the awareness and the representation of children like mine?

Mom smiles down at her son born with a rare disease while she holds him in her lap — Courtesy of Melissa Schlemmer

Think about it. The ADA was passed in 1990, so for a little over 30 years individuals with disabilities have actually been recognized as PEOPLE with the same rights as someone without disabilities. Only 30 years…and there’s still a long way to go.

My mom’s little brother was disabled, he had a diagnosis of hydrocephalus and passed away in his 9th brain surgery. But before this, the county was showing my grandmother homes to place him in.

At the age of 5, this was what was expected: You sent your child away and hid them in a home. They weren’t part of society, schools, and the community.

Not a chance. Not on my life would that ever happen.

I will continue to share Christopher’s amazing story. I will continue to educate and help people understand his life is worth living, and yes, he’s deserving of the same access, inclusion, and rights as me.

As I’ve said before, I’m extremely cognizant of how and what I share about our lives. I share with the thought someday he would read every single word I’ve ever written and I only hope to make him proud.

He’s worthy. He’s worth knowing. And his life is worth a peek, even if it’s through these tiny squares.”

Little boy with rare disease smiles big for a photo while laying on the floor in a green t-shirt — Courtesy of Melissa Schlemmer

This story was submitted to Love What Matters by Melissa Schlemmer of Forest Lake, Minnesota. You can follow their journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube  for our best videos.

Read more from Melissa:

‘There’s a fine line between pushing him to be someone he’ll never be, and supporting him in the person he’s meant to become.’: Special needs mom says ‘we can’t do it all’

‘The very best thing we could have ever done.’: Special needs mom raises feeding tube awareness

‘She said, ‘I know I shouldn’t complain, because as you know…it could always be worse.’ Wait a second. What?’: Special needs mom says ‘my son is not your worst-case scenario’

‘Shhhh, just keep walking.’ You taught her NOT to see my son.’: Special needs mom urges ‘ask the questions’

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