Video Tears & Community

I got an email today asking me to review my application process for the special summer camp we have applied for – regarding Greta’s ADEM. It seems 40 families (it is a family camp) have signed up and they only have room for 30 families – unless some smaller families double in up in the units. In the email, they included a video of introduction to the facility – the Center for Courageous Kids.

Maybe it’s just because I’m a mom. Maybe it is just because Greta is still so young and we are still discovering what all lifelong issues ADEM will leave her to deal with. Whatever the reason, I couldn’t keep my eyes dry while watching that video.

There is a saying that unless you’ve been there, you just can’t understand. That’s what is so great about community. When we get together – we are stronger. When we get together – we find understanding and share ways to cope. I’m looking forward to attending this camp and meeting other ADEM families and sharing stories and practical day to day tips. Each child experiences ADEM differently, depending on where the lesions were located, how large they were and how many there were, as well as how long it took to get properly diagnosed and treated. So many variables, yet at the same time there are still classic ADEM leftovers that almost every patient, especially the children have to deal with.

What would we do without community? What would we do if we always thought we were the only one in the entire world that suffered the way we suffer? Take the time to be open about yourself and what you are going through – whatever it is. Look for support groups or fundraisers that help create awareness or contribute to vital research. You may have a handle on your situation yourself and think you don’t need community. I’m not going to congratulate you. I’m going to tell you that out there is someone who doesn’t have it figured out and they would be thrilled to talk to someone who has been through it and knows some of the ropes.

We need each other. We need community. Just google center for courageous kids and watch their introduction video. It just might change how you feel about community.

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2 Comments

Filed under ADEM, Community

2 responses to “Video Tears & Community

  1. Ken

    While searching for more info about ADEM I came across this post and I could not agree more, what would we do without community. I looked at the CCK website and viewed the video and it’s very moving. If you’re looking for another ADEM community you can checkout the website http://acutedisseminatedencephalomyelitis.org/. It has over 100 members who have been effected by ADEM in one way or another – as a patient a parent, a relative, a caregiver. If you have more information on ADEM camps or charities it would be great if you could share that with our ADEM community as I know many people would benefit from the information.