By Aimee C., Camper Parent
Follow Aimee on Twitter: @thewriteaimee
When my friend first told me about Double H, we were up to our ears in diagnoses. It was all bad news and we felt very alone. I assumed there could be no community for a child as complex as mine. No way, he insisted. It’s an amazing place and I betcha she will qualify. I didn’t believe him that such a place even existed, and if it did, I was sure they would not want us. I looked the camp up; everything I read on the website made it sound too good to be true, so I assumed it was, and forgot about it. A year later my friend reminded me. You really should look into it, he urged. My daughter is going back again this summer. This camp has changed her life. Do yourself a favor and sign Freyja up, too. It’s better than Disneyland.
The community of parents and families of children with complex medical needs can be quite tightly knit. We share information back and forth, supporting each other in ways other people don’t understand. There are times when any one of us could be so overwhelmed with testing, diagnoses, hospitalizations, and more that we just can’t take on another single thing and we need help from others who get it. So, I took my friend at his word. I looked again.
Double H did look amazing. I emailed some details about my daughter’s primary diagnosis which is rare and complicated. I got a response right away that was loving and inclusive. She’s exactly the type of camper we serve, it said. Hurry up! Spots are filling up quickly!
So Freyja went to sleepaway summer camp. Freyja went to sleepaway summer camp without having had many sleepovers. She went to sleepaway summer camp even though her older sister had never gone. We talked about it with her for four months. We arranged two sleepovers to get her ready. We talked about how she would not be the only one with a disability or a medical issue. We told her she would make friends and that she would not want to leave when we came to pick her up. I wasn’t really sure who we were trying to convince more, her or us. It worked on her; she told every single person she knew about the sleepaway camp she was going to. Everyone was very impressed.
On the four-hour drive to camp, her eyes were big with anticipation. Mine were misty. Was I really going to be able to leave her? Or would they decide after all that this was too complicated? There was a team at the gate applauding when we pulled in and we both burst into tears. She was welcome.
“There was a team at the gate applauding when we pulled in and we both burst into tears. She was welcome.”
We met with the nurse. The nutritionist. The counselors. The program director. They took her medications, her injections, her food, her list of dietary restrictions, her walker, her wheelchair all without batting an eyelash. They pulled her suitcase toward the Deer cabin and introduced her to the kids who has already arrived. Ready? they asked her. Will you help us work on a project? Come with us and we’ll tell you all about it! She barely glanced at me as they led her off, and I knew she would be in good hands. I was right that she did not want to leave at the end of the week. She cried and her counselors cried, and everyone hugged. It was like nothing I’d ever seen. She talked endlessly about her camp, her friends, her counselors, her activities. This was the first time she had something so positive all to herself and she wanted everyone to hear about it.
When the fall applications became available we weren’t sure we’d participate. Freyja had just been discharged from the hospital and as a souvenir she had a new complication: a feeding tube. A four hour drive each way for two nights for this exhausted family. But the staff assured us a g-tube was no problem, and we decided we needed the getaway more than we needed the weekend at home, so we asked Freyja what she thought. Should we go? Her face lit up. Yeah! she enthused. I want to show you my camp!
We’ve now been to two family weekends and Freyja and her sister are both ready for camp again this summer. We have connected with our community. We have all made friends. We’ve gotten some rest. We all got to ski! I hadn’t skied since Freyja was born because I assumed it would be too difficult, too indulgent, because of course she would never be able to ski with us. But I was wrong! Where else in the world could Freyja have three ski instructors and a closet full of adaptive equipment to herself? She outlasted all of us, skiing both sessions each day for three days and begging for more. During breaks she wheeled herself from one table to the next, introducing herself to other kiddos who use wheelchairs and inviting them to play with her. She befriended kids, parents, and staff members alike. Thora, her sibling, made friends too and had so much fun playing Connect Four and skiing with our Family Pal. Thora is sometimes shy and used to living in her sister’s big medical shadow, but at Double H she has been first in line to sign up for two talent shows and taken other, shyer siblings by the hand to jump into the pool together, do an art project together, or play a board game together. She loves Double H as much as the rest of the family because she feels just as seen as her qualifying camper sister.
“She loves Double H as much as the rest of the family because she feels just as seen as her qualifying camper sister.”
“There were about 200 certified ski instructors and ski patrol,” I exclaimed to a friend. I still could not believe that every single person in our family had what they needed to get on the slope. “They all had to get trained to use the adaptive equipment! I just could not believe how many people wanted to volunteer their time to help us.” And it’s true. We met so many wonderful, caring people. Young people who lived nearby. Students who got credit for their time. Adults whose kids had been qualifying campers. Others whose spouses were part of the staff or who liked skiing or kids or who had some other badly needed talent like cooking, photography, computer skills. Staff members whose hearts and minds were 1000% in it, who were generous and kind, who made it look easy to meet the needs of every member of the complex families present.
I’m not sure what stands out the most. Was it the skiing? The pumpkin carving? The art projects? Was it the fully accessible everything? It might have been knowing that both kids were safe and in excellent hands long enough for the two of us to go off on a snowshoe hike around the camp property. It could have been that we got a good night’s sleep every night and never once had to worry about things being accessible or having to cook or clean or drive anywhere. Was it that I finished a book in one weekend? Maybe it was talking to the other families, exchanging numbers and photos and information, marveling over each other’s kids and their accomplishments, the kindness of the siblings. Maybe it was the campfire, with the songs and the cheers and the nondairy and vegan alternatives to chocolate, marshmallows, and graham crackers so we could make s’mores like everyone else. It could have been getting to talk about Freyja’s needs and complexity with other parents who truly understood and not feeling their pity, their awkwardness. I really can’t be sure, because it was all so meaningful.
“It’s a place where kids are seen, where difference is valued, where parents are encouraged to relax, where the focus is on safety, health, and fun. We will be part of the Double H family forever.”
Double H let us be ourselves as a family and as individuals in a beautiful setting, surrounded by caring people. Now I see what my friend meant when he said that Double H was better than Disneyland. It’s a place where kids are seen, where difference is valued, where parents are encouraged to relax, where the focus is on safety, health, and fun. We will be part of the Double H family forever.
>>Thank you Aimee for sharing your family’s love for camp. Double H Ranch programs are designed to provide camp experiences that are memorable, empowering, physically safe and medically sound. Our program staff and counselors work to ensure all activities and events are inclusive for all children. Click or tap here to learn more about our summer camp program and camper eligibility.