Neurofibromatosis Type 1

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Waving Goodbye to Summer: Reflecting on the End of a Remarkable Camp Experience

It’s hard to believe, but we’re at the end of another remarkable summer. Soon, we’ll say goodbye to campfires, activities, time on the water, and our cabin friends. As I reflect on this past summer, I can’t help but think about community. After all, the goal for every camper’s experience at Roundup River Ranch is to build a community that supports each camper’s need for belonging.

For many of our campers, medical labels become their identity. From “chronic fatigue” to “staring spells” and “tremors that look like seizures,” our campers have battled diseases that would leave even the strongest adult overwhelmed.

But at camp, they can connect with others on a similar life journey, be vulnerable, and have fun in a meaningful and supportive environment. In fact, one of our camper’s biggest takeaways was that there are lots of other kids like her – but that they’re also just kids who love to play and have fun.

In the process of helping our campers experience the joys of camp, I found myself growing and learning alongside them. Here are a few of the lessons this year’s Summer Camp experience taught me.

Ask a lot of questions

In one cabin we had a veteran camper with a prosthetic foot. But to her, it’s a “super foot.” Within 30 minutes of this camper’s arrival, another camper sought her out to ask about care for her superpower. The connection that was fostered between the two of them is exactly what our camp experience is about. As camper Maggie says, “I used to feel like it was unfair, but now I know that I’m not the only one with medical challenges.”

Our Candle Chats were another memorable moment. By asking what seem like silly questions (would you rather have the ability to time travel or teleport) we were able to share and reflect on some deep moments. One camper, for instance, shared that she would elect to time travel to see her parents’ reaction to her diagnosis.

By asking questions, we give these children the space to have tough conversations about the reality of their world. But we also help them realize they can just be kids and have a Summer Camp experience, regardless of limitations.

Enjoy the experience

At camp we have a “Book of Firsts” that memorializes firsts that happen at camp. One camper got to experience boating, archery, ziplining, and sleeping away from home all for the first time.

Camper Maggie got to rock climb and zipline, despite her Neurofibromatosis Type 1 diagnosis. For her, camp is a place where her disease doesn’t define her and instead, she gets to spend time outdoors, meet new friends, play and try new things.

Activities like these allow our campers to set goals and attain them, regardless of obstacles. Watching our campers gain confidence and cheer one another on was inspiring. It helped me remember that there is always opportunity for growth and resilience if you’re just ready to embrace to experience.

Be brave

When you ask Maggie if she was scared the first time she went away to camp, her answer would be absolutely. Being away from your family for so long can be nerve-wracking for any child. But at camp, Maggie, and other campers, learn how to do things on their own and that instills a sense of pride. Camp also allows them to build courage by trying new things and stepping outside their comfort zones.

Ultimately, Maggie’s experience shows me there’s no need to be nervous. By taking a leap of faith, and getting a little silly and messy along the way, you could end up having an amazing experience filled with immense joy and opportunity.

Remember the magic in ordinary things

Our ultimate goal is for illnesses to take a backseat to our campers just being kids. We want to be a place where our campers can just be themselves, where they are seen, heard, and understood.

For me, the ordinary moments were some of the most extraordinary. We branded Roundup River Ranch logos onto wood cookies and the campers and counselors signed the other side, among laughter and tears. We sang Taylor Swift songs, canoed in the lake and spent far too long saying goodbye.

I already know the power Summer Camp has on these kids, but it really hit home when I got to share my experiences and reflections with one of the camper’s dads. It was there I realized, through tears, that we got to be the creators of everyday magic for incredible kids – and that is such a privilege and responsibility that I can never take for granted.

This summer forever left its mark through the unbelievable volunteers and the amazing campers. I got to see the magic of thoughtful, creative, passionate, wise, outgoing, friendly children living their lives fully.


Needing change and finding people who see love in different situations

I have had a lot going on in the last year or two (especially lol). I always have as I have chronic health issues: NF1, chronic pain, migraine, asthma, major depression, and generalized anxiety. I have realized that I endured events that were traumatic but didn't want to label it as such at the time. But I was having a conversation the other day with my therapist and they told me that I need people in my life who see the love in everything. That really hit me. My parents have always seen the love in everything. However, I realize that in past relationships the people haven't always seen the love in everything. And I need more of that as I try to do that for other people. I need people that are accepting and understanding of me as a whole, imperfect person and my health struggles. People that show up consistently. I don't know anyone with NF1 or chronic pain and would like to make friends with them. I'd like to make friends with people who see the love and hope in everything, even in the worst situations. So this is sort of an invite for conversation. And I'm curious how have you cultivated relationships with these individuals or with individuals that have the same conditions as you? I look forward to hearing what everyone has to say and hope you all are having a good day! Thank you 🙂

#NeurofibromatosisType1 #NF1 #Neurofibromatosis #braintumors #ChronicPain #Depression #Anxiety #Asthma #Trauma #change

3 reactions

Loss and loneliness

I have so many changes in life right now that it feels crazy. Some good, some bad, some that can't be labeled yet. My grandma passed away on Halloween, her birthday. She was one of my best friends and people I was closest with. The grief and hurt is insurmountable. I know it will take time for that to lessen. She was a wonderful person who loved deeply.

On another note:
I live with my parents currently. I had moved in to get back on my feet after a divorce and increased health issues. That was a blessing in disguise as their health is going down hill and I can be there for them, even though I struggle a lot with chronic pain and other llnesses (NF1, depression, anxiety, asthma, possible others). We get along really well and always have. But I miss having a special person. A partner that I can share each other's day, joy, grief, and everything else. It feels so difficult to find someone and connect with my health and living arrangements. I have often not felt secure or important enough in many past relationships. I long for that safety and often take relationships ending as there is something wrong with me. I think part of that is explained by severe bullying by kids when I was young. And partners not following through on some promises or giving certainty in their words when it mattered. I miss having a partner (girlfriend). It can be hard to open up to the possibility of love with security and certainty because I fear losing a partner because of stuff in my past. I know having multiple chronic illnesses complicates that for finding someone. Does anyone else experience these feelings or struggles with relationships? Is there a way that helped facilitate dating for you? What gave you hope? Sorry for this being a long and maybe sad post but I really need connection and some insight. Thank you all.

#ChronicPain #Neurofibromatosis #NeurofibromatosisType1 #Depression #Anxiety #Grief #Romance #ChronicIllness #DatingWithAChronicIllness

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Friends and Chronic Illness

I'm just gonna say it. Maintaining friendships with a chronic illness is tough. It's even harder to make new friendships and meet people many times. There's a lot that goes into this: pain, anxiety, depression, and especially fatigue. Take your pick of symptoms. Having a chronic illness is exhausting. It helps to have people send a message checking in. Or just to talk about something random or that you, the person with chronic illness, is interested in. What's even harder sometimes is not knowing anyone else with your disease. I don't know anyone with Neurofibromatosis type 1. Or with chronic pain. I have family for support and I am very grateful for them. I always will be. Sometimes the support a friend can give is different and really helps. Anyways, just wanted to share some thoughts. Hope everyone is having a good day!

#NFType1 #NF #NeurofibromatosisType1 #Neurofibromatosis #NFWarrior #ChronicPain #ChronicIllness


Suggestions to help pain?

Today is a rough pain day. These have been becoming more frequent but today is an especially tough day. Even with medication everything hurts today... head, abdomen, back, my arms and legs, etc. So I am asking for help/suggestions.

What helps your pain? Be it medication, rest, hot/cold packs, herbal remedies, exercise etc.
Have a great Sunday!

#NF #Neurofibromatosis #NeurofibromatosisType1 #ChronicPain #ChronicIllness #Remedies #treatments


Tough time

It's been a few weeks since I posted. I've been to the doctor's and need to see additional ones and have imaging on my tumors. Having a few new symptoms and more pain. It's frustrating and hard. I can't work right now but I was also told that I'd need a great lawyer to get on disability even though I have a genetic disorder causing bad chronic pain. I want to work and be productive but am having a really hard time with even getting going most days. I'm trying to stay positive but traumatic things from my past have reared their ugly head. And im struggling to sleep well. Also found out my dad has sarcoma. If anyone has advice on disability, pain relief, healing practices, or sleep practices please share. I'd truly appreciate it. Or even tell me something good. I'd honestly really just like to even talk about random stuff, too. Have good day everyone

#NeurofibromatosisType1 #NFType1 #Neurofibromatosis #NF #NF1 #Depression #Anxiety #ChronicIllness #ChronicPain #Tumors #braintumors



Life transitions are difficult. They are even more challenging when faced with chronic illness, both physical and mental. I have gone through many transitions in the last couple years. I know it took a toll. And I am recovering. I am regaining my life,albeit slowly. It is not easy as I had an ableist mindset concerning myself only. I pushed too hard for too long. Now I am learning what's right for me in many areas of my life. It is worth the work but it is also very draining work. This is just a snippet of my experience. I fight chronic pain, depression, and anxiety daily. There is a lot to me. There's a lot to each and everyone of us. I thank you for this space. What are experiences on these themes/topics?

#ChronicIllness #ChronicPain #Depression #Anxiety #MentalHealth #NeurofibromatosisType1 #NF #Neurofibromatosis


A tough day, a rest day

Today is a tough day. Pain levels are high. Anxiety and depression are basically a roller coaster ride today. I've been struggling with my health lately and also got some bad news about my dad's health. Just a lot to process. Watching some movies today with a heatling pad (meds too) and just taking time to myself. What does everyone like to do on tough days?

#ChronicIllness #ChronicPain #NeurofibromatosisType1 #NFType1 #Neurofibromatosis #Depression #Anxiety


Health and a romantic relationship

Does anyone worry about finding an understanding and accepting life partner? If so, what's your primary concern? I worry about it sometimes. I'm (mostly, lol) confident in what I want and my values but worry someone won't be able to endure years of my chronic illness and mental health struggles (currently seeing a therapist which has been an incredible experience). Grateful for this space to connect. Have a great day everyone!
#ChronicIllness #ChronicPain #MentalHealth #NF1 #NeurofibromatosisType1 #Neurofibromatosis


Finding something positive

What is something positive in your life today? I can get trapped in a negative cycle on a bad pain and/or headspace day. Today is not great, but my positive things for today are my parents and hearing the birds sing outside. Sending everyone good vibes and positive thoughts.

#NeurofibromatosisType1 #ChronicPain #NF1 #ChronicIllness #Neurofibromatosis #DepressiveDisorders