Camp: To Go or Not To Go... A Mother's Dilemma

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

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Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Chronic Communication At Home: Encouraging Kids To Be More Independent

By Gary McClain, MS, PhD, LMHC

Why can’t I?
Don’t you trust me?
I know how to take care of myself!

If you are the parent of a child with a chronic condition, you have probably heard this from your child a few times, if not many. Based on what my clients tell me, knowing how to respond is not easy.

All children, especially teens, want to have a measure of independence. While resolving the conflicts that arise around independence is never easy, this process can be especially challenging for parents of children with bleeding disorders. Children with a chronic condition like a bleeding disorder may be feeling frustrated about their own limitations and responsibilities, as well as guilty about how these limitations affect other family members, which may result in being that much more intent on being independent. They also struggle with being perceived as different.

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Parents carry the burden of maintaining responsibility for keeping the home together with all fears and uncertainties that go along with the job. In the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”

It is only human to have lots of fears around your child’s bleeding disorder. After all, part of your job as a parent is to be aware of and actively preventing the “what ifs.” Chances are, you’ve already experienced some of them, or have come close.

Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep him or her from getting actively involved in their own care.

When kids with bleeding disorders aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal and can rebel, placing their health at risk and causing tension at home. And third, a young adult trying to make it on their own, and who has not learned to manage their own bleeding disorder with confidence, is at great risk.

You, Your Child, and Independence: Finding the Middle Road

It’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. However, I do think there is a middle road that can keep you feeling confident your child is adequately protected, while your child can also feel more confident and in control.

Here are some suggestions to help you help your child with a bleeding disorder become more independent:

Face your own fear

It’s only human to have fears regarding your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.

Encourage your child to express his/her feelings

Start the conversation by simply asking how your child is feeling and offer reassurance that you want to hear whatever it is they want to tell you - even the scary stuff. Give a few extra hugs and supportive words.

While you’re at it, let your child know how you’re feeling

Make your home a safe place to talk about emotions.

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Set boundaries but offer choices

Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to a sense of feeling “less” than other children. Provide your child with a sense of control by allowing for some choices in daily routines, in diet and in self-care. Explain the options and reasonable boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his or her perspective and to give them an opportunity to make suggestions - don’t forget that siblings have needs of their own.

Teach all children to be advocates

Children with bleeding disorders need to learn to speak up for themselves so that teachers, employers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.

Consider attending camp together

Some great camping experiences are available for children living with bleeding disorders and their families. At camp, you and your children can learn from the experts on the latest knowledge and treatment of bleeding disorders. Kids can have fun with other kids who are also living with bleeding disorders, while you share experiences with other parents. Camp is also a great opportunity for kids to learn how to be more independent, even to get started on infusing themselves. Camps are held around the country. Attendance is almost always free, and even transportation may be subsidized.

Remember that not everything is a medical issue

Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Many of the issues that come up with kids and teens are developmental.

Remember: The worst thing that can happen is not always the worst thing that can happen

It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? Is this causing me to create the worst possible scenario that may not even be realistic? When your child pushes back on a limitation, keeping this in mind may help you realize that, well, it might just be time to relax.

Take care of yourself

Families facing a chronic condition like a bleeding disorder are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being and find a safe place to talk about how you are feeling, even the bad stuff.

Parenting a child with a bleeding disorder can be challenging, but don’t let the fear factor keep you from helping your child build confidence and independence.

Be patient.

Take it one day at a time.

Create an atmosphere where all family members communicate with honesty and compassion.

About Gary McClain

Gary McClain, MS, Ph.D., LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website,

In The Middle of Nowhere, But Not Alone

By Shelby Smoak

Syrus O. lives in the middle of nowhere: Castine, Maine. With a population of under fifteen hundred, excitement here involves watching snow banks accumulate in the winter and, so the town website claims, walking Main Street in the summer.

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But outside of his hemophilia, Syrus is not much different from other boys in other more populated places. He loves playing sports and video games, and spending time with his friends. He cherishes learning, observing, analyzing and just plain “existing” so he says. He also loves bleeding disorders camp.

Syrus has been attending Family Camp at Lake Winnipesaukee in New Hampshire since he was a toddler. Though his memory is vague, thoughts of that time and camp conjure up “very positive” feelings, especially of a particular playground he always adored. In fact, Syrus’ act of fervent rebellion was sneaking away from his mother just to go swing on that swing. Camp has always been a welcoming and inclusive space for him. Even when he was little, there was always something for him to do and a place for him to be.

While his struggles with a bleeding disorder have presented some unique challenges in other aspects of his life, camp, Syrus says, hasn’t done anything to exacerbate that. If anything, it’s done the opposite and given him a place to vent about life issues related to having a bleeding disorder, a thing that his non-bleeding disorder friends “just wouldn’t get.”

He is also thankful he can seek advice from those who’ve experienced similar problems. For Syrus “camp is an amazing support network.”

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Syrus describes the camp community as “welcoming and warm” and “full of entertaining, intelligent, charismatic, empathetic, respectful, authentic, resilient individuals.” Camp is home. The community has helped him develop as an individual to the point that, without camp, he feels he wouldn’t be so considerate, so empathetic, so caring and, so understanding. “I look forward to camp every year. Some of my best friends come from that community,” he enthuses.

From camp, he’s learned “what it feels like to be unconditionally accepted and loved.” Camp is, Syrus says, “my family.” He encourages all his blood brothers and sisters to join him at camp. “You’ll definitely get something out of it, and so will everybody else in the process of meeting you,” he says. He adds, “Please - be part of the family. We’d love to have you!” So if Family Camp at Lake Winnipesaukee is your area camp, sign up! Go! And say “hey” to Syrus when you get there!

Say "I Do" To Camp! + The Land of Love

By Shelby Smoak

Perhaps nobody is more grateful for bleeding disorders camps than Christy Tignor. After a history of bruising and nose bleeds, she was initially diagnosed with Type 1 vWD at age 9 and thereafter began her lifelong love affair with camp, and one camper in particular.

Following her diagnosis, Christy’s hematologist connected her with the Kentucky Hemophilia Foundation, and to Land Between the Lakes Camp where at 10 years old, she attended for the first time. Land Between the Lakes was 4 hours from her home and had campers from Kentucky and Tennessee. Even though Christy admits she grew quite homesick that first year of camp, as the week wore on, fun took over so that by the end Christy was eager to go back the next year, and the next, and the next. And then there was David.

Since very few girls attended Christy’s camp in the 1980s, boys could be found a-plenty. And one particular boy from Tennessee, David, took a special interest in Christy by giving her piggyback rides when someone ran off with her shoes or trying to snap her picture. So smitten was David with Christy that, as he himself admits, he even dragged a hair dryer and hair spray to camp to style his hair to look good for her. That’s right: David’s essential survival camp list included a sleeping bag, pillow, toothpaste, snacks, hairdryer and hairspray. The girls were able to ditch the hair dryer and hairspray for the week, but not David!

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The budding romance soon flourished at Land Between the Lakes. Each year Christy yearned for camp where her excitement to see David and hang out with him as much as she could, grew into a full-blown crush. Then, at 22, Christy confessed her crush to a mutual friend and her concern that David did not feel the same way. She felt he had grown distant and aloof, and perhaps failed to reciprocate her feelings. Luckily their friend was a born matchmaker and quickly told David of Christy’s crush, which spurred David into action. He called her. And their first conversation outside of camp topped at over 4 hours and concluded with plans for their first date. And it seems David really did have Christy at “Hello,” because she claims that after that first call she knew she was going to marry him.

The next year they got engaged and the year after they tied the knot! And where better to sow the seeds of matrimony than, well, at camp! The day after camp was over, they married at Brandon Spring Group Camp, the spot where, 14 years earlier they had met. Two years after marriage, Christy and David welcomed their daughter, Lily, into the world. After Lily’s birth, Christy found out that she actually has a platelet disorder rather than vWD.Their son Zachary soon followed.

“Even though I do not attend camp any longer, it still has a very special place in my heart,” Christy says. “Not only did I meet the love of my life there, but I also made lifelong friends.” Their daughter now carries on the tradition.

Each year, Lily looks forward to camp where she is a counselor alongside her father. And each year, the happy couple can only wonder what camp may give their daughter. Could a camp romance repeat itself? Is there something special in the water at Land Between the Lakes? Of course, Christy and David think so!

David Tignor, or “Tigger“ as he is more fondly known, has been going to camp since 1981 when he was 6 years old. Today he is, well, an adult. Do the math. And his camp experience is extensive. He attended as a camper until age 17, when he transitioned to a junior counselor.

For the past 26 years, David has served at numerous camps in Tennessee and many other states as a counselor, Leader-in-Training Director and Activities Director, among other roles. David has brought his counselor experiences to hemophilia family camps in Maine, Montana, and Alaska as well as widely known camps like Tapawingo in Oregon and Hot-to-Clot in Pennsylvania. However, Tennessee’s Land Between the Lakes will always hold a special place in David’s heart because that is where he met Christy.

They met in 1985 when both were 10. Since there were very few girls at camp, David admits “they got a lot of attention from the fellas,” but luckily, he — armed with a hair dryer and hair spray, camp essentials in his mind —was able to woo young Christy. That the two could also swim helped as they were allowed into the pool’s deep end where David had exclusive conversation rights to Christy without interruption from other campers. Each year, they returned to their home states— David in Tennessee, Christy in Kentucky—their secret crush burned until summer returned.

In later years both serving as teen counselors and when in their early 20s, Christy was just about ready to give up since she felt Tigger was no longer interested in her. However, a mutual friend had the good sense to intervene. David made the call to set the situation straight and the rest is history; they dated, David proposed, they married at their beloved camp Land Between the Lakes, and soon their family grew. First came Lily, now 17 and a camp counselor having mild hemophilia herself, and Zachary, now 11; a loving son with special needs and a joy to all who know him.

For David camp is more than the educational and learning experiences. It moves beyond swimming, fishing, canoeing, archery, arts & crafts, or carnivals, tournaments, pool parties, and talent shows, or even Gold Rush, an event where campers find “fake” gold that they can spend at the general store and pizza parlor. The real gold for David is the ability to be around children and adults who also live with a bleeding disorder. “It opens doors to lifetime friendships,” David says, and “demonstrates that living with a bleeding disorder is just a normal part of our lives.”

Camp was extremely important to David as a child, but even as an adult, camp thrills him and he grows equally excited to go. “Camp Freedom opened doors to some very amazing experiences and learning opportunities,” he says. “To this day, I still get butterflies when I drive onto the camp ground at Brandon Spring Group Center at Land Between the Lakes where I get to see my second family every year!”

The Benefits of Kinesio Taping: Ask The HemoDoc

By Dr. Michael Zolotnitsky, PT, DPT

Ever rolled your ankle or bumped your knee forcing you to limp around a few days, use a brace, crutches or even a wheelchair? How about a jammed finger, twisted elbow or wrist bleed that made you avoid using your arm making simple things like shaving seem so challenging?

The question lies in what you do when this happens. Do you rest, or do you move?

Growing up with severe hemophilia, I woke to countless mornings not being able to walk because of insidious thigh bleeds. I cautioned myself during basketball to avoid another jammed finger that would inhibit me from closing my hand for days. At a young age, I was unsure of how to manage persistent bleeds aside from my prophylactic treatment. Upon completion of my doctorate in a physical therapy program, I made it my mission to educate the bleeding disorders community.

Dr. Michael Zolotnitsky

Dr. Michael Zolotnitsky

It began with aquatic physical therapy, alternatives to pain management, safe sports and safe exercises. Then I discovered elastic therapeutic tape, also called kinesiology tape, Kinesio tape, k-tape, or KT, an elastic cotton strip with an acrylic adhesive used to treat pain and disability caused by athletic injuries or other physical disorders. Using this helps control pain and support weak muscles. Two years ago, I delivered my first kinesiology taping presentation teaching individuals with bleeding disorders how to properly apply Kinesio tape. The results? Individuals with joint issues found pain relief and could move more quickly and comfortably.

Kinesio tape provides the support of a brace, but with flexibility to prevent limited range of motion and reduce muscle contractures.

It can also facilitate weaker muscles or inhibit tight muscles from firing. One of the most effective taping techniques helps reduce swelling by draining lymphatic fluid or draining synovial fluid.

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Without proper instruction, applying Kinesio tape can cause more harm than benefit. For those who are unable to work with me in person, a YouTube channel (hemodoc) is available as an online resource. My goal is for every individual to live life to their fullest and not allow their medical condition to define their ability!

Individuals are not created equal and it’s difficult to have a “one size fits all” solution. My advice is to first consult with your physician or hemophilia treatment center, ask about the use of Kinesio taping in your individual case and check out my YouTube videos for guidelines on how to effectively apply Kinesio tape to help alleviate painful joints.