‘I’m in a different boat. We’re terrified of losing our children. I’d never wish for any parent to be where I’ve been.’: Special needs mom begs ‘do your part, stay safe for us’

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“I want to tell you what it feels like being in the ‘only the vulnerable’ category. You know, the category for whom everyone says COVID-19 is most dangerous. The ‘it only affects those who are vulnerable, those with pre-existing conditions’ category.

Here’s the thing. Ever since our son Christopher came along, our family has been in a different boat than most. As the parent of a child with a life-threatening condition, we have learned to navigate very rough seas. We have learned to adapt in almost any situation. Self-isolation is nothing new. For years, we’ve been sanitizing, wearing masks, missing birthday parties because of germs, and canceling plans because of an illness or hospitalization.

Courtesy of Melissa Schlemmer

Our boat has always been different. Our body of water isn’t even the same.

Especially during cold and flu season, the waters we encounter are unforgiving. They’re unrelenting, tossing us around, and just when we think our heads are above water — we get hit again with a rogue wave. The seas we navigate can be cruel, even deadly. And that’s nothing new.

Courtesy of Melissa Schlemmer

Now you throw in COVID-19 and ladies and gentlemen, we’ve encountered the Bermuda Triangle. This is nothing we’ve ever seen before, and this… this is where we absolutely know, without a doubt, many who are chartering boats in our waters won’t make it out alive. Our community, our friends – we’re worried about them, too.

So, yes, we are afraid. We are terrified of losing our children. And to be honest, we’re always scared. Navigating the seas of parenting a child with Christopher’s condition will always come with fear and worry.

Courtesy of Melissa Schlemmer

Now I know everyone has their own views about COVID-19. Some are worried. Some are not. Some just want life to get back to ‘normal.’ And believe me, I do too.

But when I see others not following guidelines set in place for our communities, set in place for families like mine, do you want to know what it feels like?

It feels like you are sailing on by, while you are watching us sink. Watching him sink.

It feels like I’m frantically bailing out water, bucket by bucket, and you’re offering zero help.

Because I’m in a different boat, an entirely different body of water, and it doesn’t affect you.

Courtesy of Melissa Schlemmer

Honestly, I would never wish for any parent to be in places where I’ve been. Sitting on hospital bathroom floors, begging for your child to live. Seeing your child intubated while you whisper to them they need to be okay. Calling 911 because your child is seizing and his face is turning blue from lack of oxygen.

But now is the time. Please. Throw us a life preserver and do your part.

Be cautious. Be conscious of others. Stay safe for Christopher and kids like him. Stay safe for us.”

Courtesy of Melissa Schlemmer

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

Read more from Melissa here:

‘The neurologist called. ‘I’m 90% sure your son has Congenital Disorder of Glycosylation. Do not google it.’: Special needs mom urges, ‘Life can be beautiful, even when it doesn’t go as planned’

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