by Lauren Coon
Below is a rare family photo. It is on our last day at the Center for Courageous Kids. To most people our family looks like any other. People do notice my daughter’s cute little backpack and many times ask me where I got it, not even noticing the tube coming out of it connected to her. Most would be shocked knowing the majority of my days revolve around doctor appointments, therapy, school, feeding and a variety of other medical related activities. Not to mention the unexpected days when the kids’ GI issues are acting up and then all bets are off.
We entered the world of children who are medically complex almost four years ago. Both children have multiple health issues. One of our biggest issues is GI dysmotility. Our daughter’s whole gut is affected, but our son just has delayed emptying of his stomach. My daughter spent almost a year and a half on TPN (IV nutrition) due to dysmotility. She also spent more of her first year inpatient than at home.
For most families who have a child or multiple children with medical issues, I think it is easy to get stuck in the everyday routine of things. Just the thought of going away for the weekend can be an overwhelming thing for some. Between rigid schedules, temperamental medical issues, and the everyday never-ending exhaustion, it can feel impossible.
I think getting away is something very important for all families, and even more important for families of kids who are complex. As a parent, I want my children to live as normal a life as possible despite their medical issues. As nice as it would be at times, we can’t just leave the medical issues behind and go on vacation. That just isn’t our reality, as much as we might sometimes wish it was, or are annoyed by others who don’t realize how easy they have it. Making an effort to focus on the family and putting the everyday life of appointments, therapy, school, and work on the back burner (even if only for a weekend) is so important. It is also crucial in creating that normalcy I want my children to have, and in giving a much-needed break to what really can make for a lot of added stress on a family.
The Center for Courageous Kids
Thanks to a good friend, we were lucky enough to learn about the Center for Courageous Kids (CCK). They provide children with chronic medical issues and their families an escape from the everyday things that having a chronic illness can bring. CCK gives families that much needed break that many really need, but for one reason or other wouldn’t otherwise get.
I wanted to share the amazing experience we had and urge others not to be scared to try it. For some families, the experiences they can have at CCK would not otherwise be possible due to their child’s medical and physical limitations. If CCK is just too far for your family to travel, look closer to home. Although not the same, there are other programs like this throughout the country.
We went to CCK in Kentucky right after Thanksgiving. It was a six-hour drive from where we live, but still very worth it. We attended the family weekend retreat for kids with GI Disorders or who are currently on TPN or feeding tube dependent.
CCK was truly amazing, and the attention to detail making sure every single thing is taken care of is unlike any other I have seen. They are equipped to handle kids with all kinds of medical needs. The focus is on the whole family and everyone being able to get a much-needed break. The child with medical issues is the courageous camper. My kids were both considered courageous campers and both got a one-on-one volunteer who was well trained to handle any issue, while keeping the focus totally on the child having as much fun as possible. This gives families the ability to spend time with their other children, or to spend time as a family.
CCK has an indoor heated pool completely glassed in (which was so cool) that was even equipped with lifts. It is used for swimming year round. They have a gym, a bowling alley, horseback riding, a rock climbing wall, and a game room. They also have an art center that includes a wood shop, any kind of arts and crafts activities you could imagine, a cooking center, and a beauty shop. There is a lake with a dock for fishing and archery. My daughter loved the art center, and my son thought the bowling alley was the best thing ever.
The camp is 100% free once you arrive with no added expenses. That can make all the difference in the world for some. You go to the main dining area for all your meals and eat together as a family. They even have a parent’s hour out on Saturday night. The kids have a huge party, and the parents get an hour to themselves.
They have a nurse walking around during activities and the main staff has radios so they can contact a qualified staff member immediately if needed. They also have a large onsite medical center with nurses always available to handle anything that might arise while there. To ease the minds of parents whose children have severe medical needs, the Camp is roughly half a mile from a hospital, and they have a helipad in front of the medical center to transport children if an emergency arises. This is wonderful, considering the camp is in a fairly rural location. After having a child who was TPN dependent, I can very much appreciate the need for this. Some children would never get to encounter this kind of camp experience if it weren’t for such well-thought-out provisions.
I also appreciated that the camp’s director, Ed Collins, actually lives onsite. This just goes to show how involved he is in the camp. We even saw him happily lending a hand in the kitchen washing dishes just to help after dinner one evening. This camp and the children it serves seem very important to him. This means a lot when two of those campers are your own.
CCK goes above and beyond to provide anything that may be needed and to have everything arranged up front so children can do things not otherwise possible. I tend to be a neat freak at times and really cautious about my kids being exposed to germs found in public places. CCK got my approval on that note, which makes for a much more relaxing experience.
Our Experience at CCK
Even though my daughter experienced some GI issues on the weekend of our visit, I appreciated that my son’s camp experience wasn’t affected, thanks to the way the camp is set up. We were able to take my daughter to rest while he was still able to go do anything he wanted with his volunteer. It really made for an amazing weekend for our whole family. The children were able to bring home all the things they made in the arts center, and they still love to look at every bit of it. They made many wonderful memories at CCK, and ever since we arrived home, they’ve been asking when they can go back to the next GI disorders weekend. This experience is something for which my family and I are extremely grateful.
If you are interested in attending the Center for Courageous Kids, this is the general camp website and a link to their schedule. They offer many different weekend retreats for families of kids with a wide range of medical and special needs. The first part of the application is online. It is quick and easy. You then have your child’s doctor complete the second part and send it in. After that they will contact you via e-mail.
Give your family that break, and we hope to see you there!