A week ago, I was given the opportunity to shoot a documentary film on the VACC Camp here in Miami. VACC (Ventilator Assisted Children Center) Camp is a free week-long overnight camp for children needing a tracheotomy, ventilator, C-PAP, BiPAP, or oxygen to support breathing, and their families. The children come from all over Florida and the United States to partake in activities such as swimming, going to the beach, boat rides, field trips, campsite entertainment, and structured games. For many of the children, these are activities they could only experience at the camp.
The camp, which celebrated its 25th year in 2011, was started by Dr. Moises Simpser, Director of the Divisions of Pulmonology and Pulmonary Care at Miami Children’s Hospital. Simpser, who was born and raised in México City, México, became passionate about a camp for ventilator assisted children (several of whom were his own patients) after his own children were old enough to attend summer camp. He believed every child should have the opportunity to enjoy the highest quality of life possible, regardless of their health.
Since 1986, Simpser and his small but dedicated staff, enlist the aid of several dozen volunteers (many of whom are teenagers and medical students) to create a camp where these special needs children get to enjoy activities that are not readily accessible to technology dependent children. Moreover, the camp gives these children (and their parents) the chance to meet other campers who face the same challenges they do. Many of the children are wheelchair bound and have limited, if any, movement from the neck down.
Feeling sorry for them yet? Don’t. Know why? Because as tough as you think these kids have it, they don’t feel sorry for themselves. The truth is, I learned more important life lessons during my week-long shoot at the camp than I could have ever expected…
1) There Are People Out There Who Still Give A Damn
OK, so I kind of knew this already but that’s where it always begins, yes? Someone has to first give a damn about something and then get others to also give a damn before any great thing gets done. Dr. Simpser, who has remarkably very little tolerance for the word “no”, has gotten other people to give a damn about a camp for these children…and it hasn’t come easy.
From securing a location (A.D. Barnes Park in Miami) and eliminating any safety hazards, to arranging transportation for the children (many of whom have oxygen-equipped wheelchairs that can weigh up to 500 pounds), providing daily meals (breakfast, lunch, dinner & snacks), boat rides (courtesy of Shake-A-Leg), overnight medical staff, and about 1001 other things that need to happen for a camp like this one to be successful. Simpser’s dogged determination and that of his staff have kept this camp in motion for 25 years. Funny what you can accomplish just by giving a damn.
2) You’re Only As Normal As You Think You Are
As part of my documentary shoot, I wanted to speak to several of the campers on camera to get their views on the camp as well as their own condition. Annelise, who has attended the camp for 6 years, was one of the children I interviewed. Annelise is confined to a wheelchair and needs to be connected to a ventilator 24 hours a day so that she can breathe.
Betrayed by her muscles, she can muster just enough movement in her arms to get a chop stick in her mouth so that she can reach her blackberry to send text messages and update her facebook page (she puts most “normal” people to shame with the speed of her texting). When I asked her how she deals with her limitations, she replied, rather defiantly, “I don’t know about them (the other campers), but I can do the same stuff that normal people do.”
So many people see themselves as inferior because they feel they’re too fat, too skinny, have too many pimples, have too little hair, have boobs that just aren’t big enough, suck at sports – while a young girl who can’t breathe, walk, or eat on her own sees herself as “normal”. I guess “normal” is just a state of mind, isn’t it?
3) Setting Goals Is Important
Maylan, who lives in Miami and is cared for by her mother, was another camper I had the pleasure of interviewing. Maylan faces the same challenges as Annelise: confined to a wheelchair, needs to be connected to a ventilator 24/7, and has limited movement below her shoulders. When I asked her what she sees herself doing over the next 10 years, I was quite surprised by her answer. She hopes to somehow attend John Hopkins University and go on to become a psychiatrist so that she “can help people with their problems”. After she retires, she plans on returning to school to become a marine biologist and live by the ocean. “I have my whole life planned out”, she said with a grin that would light up a cave.
You think goals are just something you write out on a piece of paper because that’s what your Tony Robbins audio book said you should do? For some people, goals are what keeps them going; gives them a reason to get through another day; gives them the strength to look life in the face and say, “You’ll never get the best of me until I’m done with these things.” I took a fresh look at my own goals and realized that, compared to Maylan’s, they were pretty weak – I’m gonna change that.
4) You Only Have One Life
Chris was another camper I was able to interview for my film project. Chris is perhaps one of the most popular kids in the camp. He can talk “smack” with the best of them, is a die-hard Lakers fan, and can often be seen zipping along on his motorized wheelchair at its top speed (which is pretty darn fast!). Chris, who made the journey with his mother all the way from New York City, suffers from an unusually rare disease known as Thanatophoric dysplasia – a severe skeletal disorder characterized by extremely short limbs and folds of extra skin on the arms and legs.
Infants born with this affliction are usually stillborn or die shortly after birth from respiratory failure. Chris has managed to make it to 13 years old and it’s his mother’s steadfast belief that the main reason for that is because he looks forward to VACC camp every year. I asked him how he manages to keep such a positive outlook on his situation and he replied, “You only have one life so enjoy it as much as you can. When the time comes, that’s the time – that’s it.” One life. We all know that…right? We’d never let fear, envy, anger, or resentment keep us from making that one life a purposeful one, right? A remarkable one, perhaps? Of course not.
5) Helping Other People Can Change Your Life
VACC Camp is made up solely of volunteers. Dr. Simpser is a firm believer that you get way more from people when they volunteer for service than when you pay them (don’t get him started on that). Many of the volunteers are teenagers who give up their Spring Break to assist the campers for the week. VACC Camp staff go to the local High Schools to recruit new volunteers every year. Once enlisted, volunteers must complete several basic medical training sessions (these are mandatory). At first, students sign up just to get the community service hours (and the fact that three free meals are also provided daily). But as volunteer after volunteer confessed to me, the camp ultimately becomes a life-changing experience.
Several of the volunteers I spoke with were on their second, third and fourth tours of duty with the camp. Many of them stated that they look forward to the camp every year and couldn’t think of spending their Spring Break doing anything else (did I mention these were mostly teenagers?). Volunteers are assigned specific campers and they become their “Buddies” – they help feed, clothe, and bathe the campers as needed. As the week goes by, there’s a bond that develops between the volunteers and the campers.
To the young volunteers, there’s the good feeling that comes from “mattering” to someone else but during that same week, they also begin to understand that the campers matter to them as well. One of the volunteers put it this way: “These kids have a really hard life but at the same time, these are probably the happiest people you get to meet…ever. You can’t help but change and become a better person for it.”
When we stop to help others, we help ourselves, too.
Reflection
During my week at VACC Camp (and a few days with my wife and daughter), I realized that making a difference in another human being’s life sometimes takes a lot of careful planning and hard work. And we’re already oh so busy with our own lives, yes? Much easier to simply text a $10 donation and get on with life. But like the young volunteers who make up the majority of VACC Camp learned, as you give value to another human being’s life, you get value in return; sometimes even greater than what you gave.
It propels you back into your own world fresher, stronger, and more resilient than you were before. Think you can’t find that type of value in time spent with someone who can’t breathe on their own? Who can’t walk? Who’s been abused? Who’s battling cancer? Who’s blind? Who’s been in Foster Care all their life? Who’s in need? Think again.
When “Do no Evil” has been understood, Then learn the harder, braver rule, “Do Good.” ~Arthur Guiterman
What are you doing to add value to your life?
24 comments
Perspective. Something that I honestly need right now. These are some inspiring kids.
What an inspiring story mate. And isn’t it always the way that the folks that feel sorry for themselves are never those that (arguably) have the most reason to?
Thanks for this, mate, loved it.
Danny,
Thanks for stopping by and leaving a comment. The more I get to know you, the more I (frighteningly) believe we are not that different at all in our core beliefs/values. You just hide the fact that you’re a “miserable sod” a heck of a lot better than I do 🙂
Glad you enjoyed it & thanks for sharing. Cheers.
Danny,
Thanks for stopping by and leaving a comment. The more I get to know you, the more I (frighteningly) believe we are not that different at all in our core beliefs/values. You just hide the fact that you’re a “miserable sod” a heck of a lot better than I do 🙂
Glad you enjoyed it & thanks for sharing. Cheers.
I’m a Scot – misery is in our blood, mate. 😉
You have provided such a great information. Thanks for the post.
Awesome Dan!! Wonderful what a GIFT a glimpse into someone else’s world is, eh? Puts all your own crap waaaay into perspective. Thanks for this. :o) Hugs to you.
Monica,
Heck, we can all use a little perspective every now & then, yes? When we meet kids who can’t breathe on their own, it makes you look at things a bit differently.
Always good to see you here – hugs back 🙂
Terrific article. I have shared it with several colleagues. This is a great example of what we can do when treated with dignity and respect. All people have value.
This is so awesome and so powerful. I think I was meant to read this today.
Sumner,
Sorry for the late reply. I think a camp such as this one for the many young volunteers is really a blessing. Most of us start appreciating the little things in life AFTER we get married, have our kids, buy our 1st house, etc.
The volunteers really get quite a dose of reality at a young age and I believe (after talking to several of them) that it gives them a whole new perspective on life. And in this “me first” society, I think that’s a good thing.
Thanks for stopping by 🙂
Great article! I have a granddaughter named Krystal, who had her first stroke when she was 12 hours old. That was 14 heart surgeries and 3 strokes ago. Doctors said she’d never walk or talk or feed herself. But as she said, “They told my family all that stuff. Nobody told me I couldn’t do anything, so I did.” She’s now in college, when she’s not summering in Majorca (working in a castle, no less), skiing in New Zealand (working at a coffee shop), or being an extra in a movie (her dad is a stunt man). Through her, I started raising money and volunteering with the local children’s hospital — and you are absolutely right. Kids with chronic medical conditions are seldom unhappy, seldom spoiled, and almost unfailingly optimistic. It’s a privilege to spend time with them. Thanks for sharing your inspiring film and the lessons you learned!
Deb,
Wow! 14 heart surgeries?!!! And now in college and traveling the world? Remarkable what one can overcome when you don’t feel sorry for yourself, yes? Great story – thanks for sharing.
And sorry for the late reply to your comment 🙂
Loved this article, thanks!
Great post, amazing message. Thank you
so much to be thankful for
so much to be thankful for
This article touched my heart. It brought back memories of a job I had when my two daughters were in preschool and grade school. Because of their schedules and my husband’s job schedule I had to have an overnight job. So I worked for United Cerebal Palsy in one of their CLAs. CLAs are apartments where disabled adults live with staff, some are more disabled than others. I had three clients, 2 men, 1 young woman. Two of my clients were non-verbal, one could talk, but it took a long time to learn to understand her. My job was to clean their apartment, check them every fifteen minutes or so in case they needed assistance, get them up in the morning, bathed, dressed and fed and ready for their day program or school.I took the job because I could walk there and the hours fit my needs. After the first month when my muscles screamed from all the lifting everyday I got into a routine and could stop and enjoy my clients. I adjusted to massaging cramped muscles common in patients with cerebal palsy and learned to feed them and help them drink without them wearing the contents of the cup. And then, I fell in love. I fell in love with the smile and joy of one of them. The acceptance of being deserted by a mother of another. The day to day life lessons of acceptance of a third who was the most disabled. I KNOW why those teens go back year after year. The rush you get from helping someone be the best that they can be and the most able they can be is incredible. And the other thing it taught me? It taught me that my children who had mental and physical disabilities were very lucky girls to have the abilities they have. I never fell back into saying ‘poor me’ or ‘why me’ again. And I learned the importance of allowing them to become independent adults despite their disabilities if only I’d just get out of their way and let them GO!
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