Craz-EoE-town: Flying Horse Farms – Where the Magic Happens

WHERE CAMP IS GOOD MEDICINE

Two summers ago we were introduced to Flying Horse Farms – a camp for children with serious illnesses and their families. One of their slogans is, “For a week at a time, being sick takes a backseat to being a kid.”

They call it a transformative experience. I saw that to be true the first time we picked Brady up from the GI camp the summer of 2018. Brady can be a boy of very few words at times, even with my concerted effort of asking him open-ended questions. The descriptions of his day or recess or school or really anything are generally kept to no more than 10 words. After we picked Brady up from his first week at Flying Horse Farms, he talked non-stop about his experience for a solid hour straight on our way home. Transformative was an understatement.

For the first time, Brady was surrounded by other kids going through what he goes through on the daily. From stopping to do bolus feeds or taking multiple medications, to the isolation he can sometimes feel living life with this rare disease. Perhaps, more importantly, Brady got to meet kids who looked a lot like him. Other kids with feeding tubes. Other kids that have a hard time eating. Other kids who have food allergies. Other kids who only have a few safe foods. Other kids who get him. And didn’t make him feel any different because he just so happened to have this rare disease and something called a g-tube.

I soaked up his joy after he told story after story of his experiences at camp. I knew right away how lucky we were to have found a place that truly was magical. Brady basically counted down the days until he found out if he got into the GI camp the following summer. Except this time, we put in a few more applications. One for Sydney to attend Sibling Camp and one more for our family to attend Family Camp.

We found out last spring that our kids did indeed, get into their respective camps. We found out a few months later that our family was accepted into the Family Camp. So happy!

With all that said, we just got back from our first family camp and I’m truly inspired. What a weekend! It’s been so long since my last blog. I usually wait to write until I really have something to say. So, here it is…

A SMALLER WORLD

Here's the thing. Ever since Brady got his diagnosis 8 years ago, the world became a little smaller. No longer were we the family that could just go to a restaurant, order a meal, and enjoy some time together as a family happily eating a well-cooked meal that we didn’t have to prepare. We avoided restaurants. Brady was so anti-food back then, what was the point? Most food would end up being spit out, thrown on the floor, or thrown up.

No longer were we the family that could go to any celebration, any gathering, or any party. We had to think twice about what we said yes to as a family. Many activities involve food of some sort. Most celebrations from holidays to birthday parties all involve food. From the early days of diagnosis to even today, we have to think about what we say yes to. And when we have to say no, our world becomes a little smaller.

And over the years, the activity list has dwindled. After Brady’s feeding tube insertion several years ago, we started saying no to more activities. Brady has walked away from a few activities because of his fear of getting hurt. Some may question that, some may judge that. I know I have to listen to my son and listen to my gut about what is and what isn't right for him. And it's a hard balance trying to figure it all out as we move forward on this journey. When to push and when not to.

Our world is smaller sometimes. And it can be isolating It’s hard to explain. And frankly, many people just don’t get it.

Which leads me to my next revelation in this EoE journey, is that we are surrounded by the people that get it and the people that don’t. It’s the people that don’t get it that can make our world smaller. And for the people that get it, or try to get it, that help our world from crashing in on itself.

THE CAMP EXPERIENCE

GI Camp, Summer 2019

Brady on the zip line

GI Camp, Summer 2019Brady discovered the Spiderman costume at camp. He wore it most of the week and earned the nickname, "Peter Parker".

Camp is a place that I never thought Brady could participate in after his diagnosis, and especially after his feeding tube insertion. And then I heard about Flying Horse Farms and suddenly it seemed that this impossible thing could become a thing.

I remember the first year we dropped Brady off at camp feeling equal parts excited and equal parts overwhelmed by the fact that I was handing over my special needs child to a bunch of strangers that would look after him, feed him, bolus him, medicate him, etc. for several days in a row. I remember being fearful that Brady might get homesick. I remember being hopeful that he would make new friends. I remember praying that he would gain more confidence. I remember hoping that he could just be a kid and have fun. I remember thinking, I hope his cabin-mates get him. I hoped against all hope that it wouldn’t be a big deal that he still has to wear pull-ups at night and have a protective bed mat over his sheet because he still gets so much nutrition from his feeding tube and he sleeps so hard that he needs a pull-up to stay dry at night. I remembered hoping and praying for so much that first year.

And what a sense of relief when all of those hopes and dreams came true. I didn’t need to be worried about Brady being homesick. In fact, I vividly remember him telling me after he got home from camp, “Mom, I had so much fun at camp, I didn’t have time to miss you.” Wow! In fact, I didn’t need to be worried about anything because Brady went to camp and made tons of new friends. He went to camp and came back with more confidence, more sure of himself, and even proud of having a g-tube. He went to camp and had the absolute time of his life. The highlight of his summer. Where he got a chance to just be a kid going fishing, learning archery, tackling the high ropes course, zip lining for the first time, and woodworking. And he just happened to be doing this with all of his new found friends also suffering from GI diseases/conditions. A place where all the counselors, all the staff, all the volunteers, all his newfound friends got him.

SIBLING CAMP EXPERIENCE

Sibling Camp, Summer 2019
Sydney's first time going away to camp

After Brady’s first two amazing GI camp experiences, I was surprised that my nerves were back when we took our daughter, Sydney, for her first Sibling Camp. Once again, one of our children was going away to camp for the very first time at Flying Horse Farms and I had to hope and pray that Sydney wouldn’t get homesick, would make new friends, and would basically have the time of her life.

What an amazing concept, Sibling Camp. So many times Sydney has had to take a back seat. So many times we have had to postpone or cancel plans to accommodate something, anything that has come up because of Brady’s EoE. So many times I would see fear in her eyes as she watched her brother doubled over in pain because of something he had eaten or projectile vomiting all over the place because of an EoE flare. Or the disappointment in her eyes when Mommy and Daddy were gone or missing something because of medical appointments.

Oftentimes I’m in awe of what my 9-year-old daughter endures and how she responds. When the world is unfair and she’s missing out on something because of having a brother with a rare medical condition, her understanding and patience shines through. Her heart and her compassion is really something to behold and I couldn’t be prouder of the amazing human being she’s becoming. Anytime Brady has a procedure, we will come home to find something that Sydney has drawn for her big brother. She’ll find treats that he can also have. She worries about him. She feels for him.

I couldn’t wait for August to get here. This time I knew it would be Sydney’s time to shine. Her time to be a kid and have fun. And most importantly, meet other new friends at camp, other siblings that get it. That get what it’s like to be a sibling of someone with a medical condition.

And shine Sydney did. She loved every minute of camp. Home sickness wasn’t even a passing thought. In fact, when we picked Sydney up from her first Flying Horse Farms experience, our daughter (who doesn’t show a lot of emotion) started crying because she didn’t want to leave camp. She bonded with so many of her cabin-mates and counselors that she really didn’t want to leave the magic behind. What an incredible experience for a little girl who sometimes has to take a backseat, always without complaint -- and she got to ride in the front, steering her way through one of the best weeks of her life.

THE FAMILY CAMP EXPERIENCE

Family Camp 2019
Family prep for the zip line

Family Camp 2019
Brady and Sydney with our "sidekicks"

Family Camp 2019
Brady with his new buddy, Brady!

Going into this past weekend, I had no idea what to expect. What I got out of the Family Camp experience was so much more than I expected or could have ever anticipated. One of the biggest surprises for me was the discovery of how big our world can be. So many times over the years I’ve thought about and focused on how our world has gotten smaller, that I hadn’t realized all the ways it could become bigger until we experienced everything that was Family Camp.

Friday night we found ourselves surrounded by a bunch a strangers and left on Sunday surrounded by new friends, new comrades living in this oftentimes crazy world raising kids with severe medical conditions and knowing we are not alone. How big our world feels now. Knowing there are other families out there that truly get it. Other families that are doing their best. Other families that have experienced heartbreak. Other families that have felt the isolation. Other families that have lived in a small world. Other families that have faced and conquered their own mountains. Other families that have faced adversity and come out on top.

I also discovered the importance of focusing on my family. Family Camp is an electronics-free zone and I’m so grateful for that. For 2.5 days, I unplugged from my cell phone, from social media, from all the distractions that don’t really matter and I focused on my family. I saw their faces. I saw their joy at trying something new. I saw their confidence build. I saw them conquer their fears. I saw their creativity. I saw them dancing. I saw them laughing. I saw their excitement. I saw them truly taking in the outdoors. I saw the sun. I saw the moon. I saw new friendships come to life. I saw the magic. I saw our world become bigger.

And as I continue to process the experience of Family Camp, I’m going to commit to trying to find a way to bring the magic into our home every day. To set aside time to unplug and just be. To see, really see, my family and focus on what is really important. Because our little family of 4 really get it and I’m okay with that. We live it and breathe it. We become stronger from it. We become better for it. And in the end, that’s what really matters. Transformative experience, indeed.

So, thank you Flying Horse Farms, for teaching me that our world can be so much bigger, if I just let it.

To find out more about Flying Horse Farms, please visit their website at:

https://flyinghorsefarms.org/

Did I mention this camp is absolutely free to campers and their families?! That means fundraising is a very real thing that needs to happen every year. To donate, please visit:

https://flyinghorsefarms.org/give/giving-guide/