Tag Archives: Camp

Cheer!!

Being at The Center for Courageous Kids is a life changing experience. Going to a camp designed for kids with medical issues is freeing.
There is so much to write – too much actually. But when the little girl paralyzed from the shoulders down was put on a horse and got to ride, we all cheered for her!
Trained walkers held her back, head and trunk in place as they walked beside her on her horse.
So glad someone had the vision to create a camp for children with special needs!!

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Filed under ADEM

The Drag Test

When I worked at summer camp, not revealing how many years ago, we had a swimming pool. Lifeguards did the work they needed to do. Camp Yorktown Bay, where Michael worked this summer, has a nice lake and therefore they had to practice and perfect the Drag Test.

During training week, the staff were required to find the “dummy” drowning camper nicknamed Luke Skywalker within a certain length of time. As with all drownings, every second counts. Assuming the camper was underwater for two minutes prior to the alert being sounded that a child was missing in the lake, the staff now have only 2 minutes left to find the child before permanent brain damage and so forth takes over.

Michael described in detail the work of the staff divided into three groups: divers, swimmers and walkers. Staff were assigned to their appropriate group based on their skill level in the water. Michael, of course, ended up as a walker. His description of the walkers linking arms and going through the shallow part of the lake step by step searching for Luke Skywalker definitely made me feel like I was there experiencing it for myself.

The precision and efficiency the staff is required to achieve before campers actually arrive is impressive. What if we put such practices into our parenting? When was the last time your family did a fire drill – and took it seriously? If you live in Tornado alley, or even if you don’t, do you know what to do? We expect summer camps to protect our children and to hire competent staff before we entrust our precious offspring to their care. Is there a need for a “drag test” in your home?

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Filed under Community, Family, Parenting

Even Keel

I’m running out of options and the few remaining aren’t that promising. My primary care physician and I agree on that. He’s great about realizing I’m not your average patient that you can just pump with drugs and so he searches for more natural remedies for me. I’m a bit of a medical freak and I know it.

Today he asked me how my stress levels were. Ha! Yes, it is true that reducing stress in a patient with Crohn’s Disease can be very beneficial to their guts. I’ll admit it – stress goes straight to my gut and I can literally feel it. My husband keeps an eye out for me and has even called me on some stressful situations and said it would be better for me to back out or avoid those situations. I’m so grateful for his support, but sometimes, stress just happens.

I’m a pastor’s wife with three kids, one of which has an autoimmune disease that keeps us going back to specialists every 6 months for MRI’s and other testing. Nope, no stress here. Did I mention that my husband actually pastors two sister churches and that they are each doing a Vacation Bible School this year – different programs of course – and I’m learning parts for both of them? My oldest is working at camp for the summer and I miss him very much, but I hey he is a senior now and it’s time for this mom to get in on all of the senior class fundraising things – don’t wait for school to start. Time is money!!

I suppose that for me, some of those stresses are worth it. I’d be a fool to think I could truly remove all stressors out of my life and remain forever on an even keel. By removing stressors, I’d also be removing amazing parts of my life. This disease has already taken enough from me. I won’t let it take my life.

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Filed under Crohn's Disease, Health & Wellness

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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Filed under ADEM, Community