Taking a Break for Fun: Summer Possibilities with Margaret King

This week we are continuing with the theme of summer fun! Today we’ll hear from Margaret King, a Heart Mom, who spends her summer hanging out with her fun-loving son.

 

In the CHD life, sometimes it’s hard to get a break. While summer brings a brief reprieve from school expectations and IEP goals, we CHD families have our own challenges: from trying to cram appointments and therapies into the months when our child is off school to watching some of our children struggle with the loss of their usual routines and social outlets, navigating new extracurriculars staffed by people unfamiliar with our child’s diagnosis, and dealing with hot weather and physical activities that can be too strenuous for our kids.

Yet, summer is a wonderful time to experience new places and try new things that can open the windows of self-discovery, create family memories that will last a lifetime, and even increase skills for self-advocacy. Families living with CHD deserve, and need, opportunities for fun, exercise, and release from stress and worry. While as a heart mom, I’ve fine-tuned our family’s version of “fun” over the years, I hope to instill in my own child that “fun” is the adventure itself, not just the destination.

Learning Your Limits While Being Limitless

Multnomah Falls in pouring rain–silly us, bringing only 1 umbrella to the Pacific Northwest!

As someone with chronic illnesses myself, I want to teach my child to respect how he is feeling physically and mentally, and to know when he is reaching his ‘max” for the day. Some days he can go almost nonstop for 3-4 hours, and other days, he might struggle to walk even a quarter of a mile, depending on weather, whether he has a cold, or just has been on the go too much. Honoring this has been great for his self-awareness and self-advocacy in other areas of life.

But we got to see this!

Sometimes, it also means going somewhere fun when we’re feeling good, even if it isn’t “perfect” weather outside. This has resulted in many of our most magical days, because we’re often among the only people crazy enough, for example,  to go the beach or Multnomah Falls in the pouring rain a couple weeks ago (and the only people crazy enough, apparently, to visit Oregon with only 1 umbrella for 3 people).

 

 

The ocean in the rain: maybe not perfect lighting for photos, but we had a blast.

“Off” Days Are Our “On” Days

We try to avoid going places during “peak season” due to hotter temperatures, longer lines, and crazier parking. Often going to a fun destination (like a water park or amusement park) very early or very late in the season is much quieter, cheaper, and all-around a lot less wear-and-tear. Last summer, instead of going to a bigger our out-of-state destination, we took a week off and visited several fun places within a 2-hour radius of our home…on the weekdays, when they would be less crowded.     

 

Reservations and Expectations Are Not Family Friends…But the Unplanned and Magical Are

Pre-paid tickets? Big expectations? These, at least for us, create a lot of pressure to get a certain level of experience out of what often turns out to be a major expense. Lowering the stakes allows us to be open to the unexpected, and results in a lot less guilt or disappointment if the weather is taking a lot out of my CHD child or one of us just isn’t feeling 100% that particular day.

This past winter, we drove from Milwaukee to Madison, WI to see the holiday lights at the zoo. We walked all over the zoo, saw all the animals, and got worn out before the lights even came on. Sure, we didn’t end up seeing the lights, but leaving through the back entrance, we saw the sun setting over a beautiful frozen lake, and joined the people playing on it. Honestly, playing on that frozen lake it something I’ll never forget–and was probably far more special to us than seeing the holiday lights, after all.

To quote the late, great Anthony Bourdain, “no reservations” has become my motto.

 

We didn’t see the holiday lights that night…but played on this frozen lake at sunset instead

Fun, Fun for Everyone

Summer fun will look different for each family, and for many of those living with CHD and other special needs, that is particularly true. But over the years, here a few tried and true summer options we’ve found:

  • Museum membership reciprocity: instead of buying several memberships to local attractions, we pick one different membership each year. Most museums, zoos, nature centers, and botanical gardens that sell tax-deductible memberships have reciprocity with other institutions, allowing us to visit several other educational sites per year with our membership–usually all for free. Some children’s museums also offer free tickets or memberships for families with special needs.
  • Nature: We’ve discovered many county, state, and even federal natural areas and historical sites that have free parking and free entry. Many nature centers and parks have short (1-mile or less) nature/interpretive trails that are flat, easy terrain and often wheelchair and stroller accessible.
  • Farms and farmer’s markets: Summer is the time to visit local farms that offer pick-your-own berries, peas, pears, and apples. We like these because you can go at your own pace, go early or late if it’s hot out, and of course, make delicious and healthy recipes when you get home. Local farmer’s markets are a great sensory experience for kids without being too overwhelming, and get us eating healthy in a season that’s ripe for indulgence!
  • When in doubt…water: Swimming pools and wading in lakes are, of course, kid favorites, but going ponding at your local nature center, visiting splash pads, or just running through the sprinkler are great ways to cool off. When it is too cold for swimming, we enjoy simply beach hunting at local lakes for “meditation rocks,” “worry stones,” and other treasures.

 

A heart-shaped piece of driftwood, a gift from Lake Michigan

  • Or animals: The healing power of animals can’t be overstated. Being out and about in summer gives us more opportunities to view animals in their natural habitats, as well as safely encounter them in educational and recreational settings.
  • Library programming: Summer reading programs promote reading for fun prizes, but many summer reading programs offer free events for children throughout the summer. From constructing marshmallow catapults to storytimes and magic shows, to kids’ concerts and reading to a service dog, my son has had some great experiences right at the local libraries.
  • Flower hunts: When my son was recovering from his 3rd heart surgery one summer, our activities at home were limited for several weeks, especially because there was a major heat wave occuring at the same time. That was when we started our summer tradition of walking around the block, going on “flower hunts” to see what was in bloom every few days. Sometimes, simple is best…but there’s nothing wrong with becoming acquainted with your local wildflowers and garden blooms, with their accompanying butterflies, caterpillars, and birds!  

 

Summer with CHD has its own considerations, but it’s also the perfect time to find out what you love to do as a family, try new things, and gain important insights and life skills. “Fun” doesn’t have to be a big production or involve “big ticket” attractions–though there’s nothing wrong with doing those once in awhile, too! We’ve found that simple spots are some of the most relaxing and beautiful–and easiest for us to adapt to, depending on our own needs.

 

 Margaret King is a Wisconsin writer who enjoys penning poetry, short stories, and young adult novels. In her spare time, she likes to haunt the shores of Lake Michigan, similar to many of her fictional characters. Her recent work has appeared in Unlost Journal, Verdancies, the Ginger Collect, Foxglove Journal, Moonchild Magazine, at art shows and in various other spots on the web. She was recently featured as Poetry Superhighway’s Poet of the Week, and is the author of the recently-published novella, Fire Under Water.

Summer Fun! – Laura’s Adventures with CHD at Camp Odayin

For the month of July, we are bringing you stories of how CHD families enjoy the summer, along with tips and tricks on how CHD patients can beat the heat. To kick us off for the month we have Laura Hoagland, an adult CHD patient and avid adventurer. Laura shares her experience with Camp Odayin, and explains why no matter how much you love adventures, the unknown can still be very scary for CHD families.  

 

To say I enjoy summer is an understatement. I LOVE summer! Growing up in the Pacific
Northwest summer was filled with family vacations to the coast, afternoons on the lake and
attending a local summer camp with school friends. As I got older, and especially throughout
college, I intentionally scheduled traveling into my summer
agenda; tours through Eastern Europe, roller coaster riding in
Disneyland, exploring Alaska, sky diving, road trips with college friends down the entire west coast, zip-lining down Whistler Mountain, bungee jumping and paragliding over the Teton Mountains after a day in Yellowstone. This summer, I’m exploring Sweden and Iceland. I’ve always had an adventurous spirit and summer is when my spirit can truly soar. In 2009, as I was finishing up my undergraduate degree in Special and Elementary Education, I quickly became nervous about my future. Not only was I about to leave the safety and predictability of being a student and enter “the real world,” but I was entering adulthood with CHD. My anxiety and nervousness led me to a quarter-life crisis! So I took my problems straight to Google! I began searching for support groups for young adults with CHD. I had met a handful of people with CHD before, but never had I met another person with Tricuspid Atresia, a single ventricle or the Fontan physiology. I felt like I needed a role model, a support group, someone to help guide me on my journey as adult with CHD. I felt alone and I wanted my hand held as I ventured into the unknown. What does adulthood with a CHD look like? My search turned up message board sites and some Facebook groups but I had no luck in finding an in-person
support group for adults. However, I did find summer camps for children with CHD.
Summer camp? Children? I LOVED summer camp when I was younger and as an aspiring
educator, working with kids seemed like summer fun to me! I found Camp Odayin in Minnesota. I was worried that the Midwest would be too hot and humid for my half heart, but after discovering that camp was on a lake and had air conditioned cabins I applied to be a counselor. That summer my adventurous spirit got on an airplane and flew to Minnesota, where I knew no one. As a volunteer camp counselor, I spent the week horseback riding, canoeing, swimming and becoming a human bowling ball down a slip n’ slide, all while wearing silly outfits. Oh, and I got eggs cracked over my head by campers!

As summer faded into fall my memories of camp continued to shine bright. After an exhausting
year as a first-year teacher, I was excited for summer break. I was mostly excited to venture the
1,500 miles and spend another week at Camp Odayin. Before I was to fly out for camp, I was in
Southern Oregon with my family. The week before this vacation I was taken to the ER because I
turned purple. While in Oregon my oxygen saturations dropped into the 70s. My parents,
veterans of traveling with a “high risk” CHD kiddo, kept calm and arranged portable oxygen for
the duration of our trip. I called my cardiologist and we scheduled an exploratory heart
catheterization once our vacation was over. Talk about a damper on summer fun.

Vacation was over. It was a Thursday and I was at Seattle Children’s Hospital about to have my
bajillionth heart catheterization, I’ve literally lost count. As I was walking myself into the
operating room, and began climbing up on the OR table, tears welled up in my eyes. I was 24
and scared. Six years before when I had a heart catheterization, it didn’t go as planned and
surgical intervention was required. This summer, I had plans, so things needed to go as
planned. My nurse looked at me and in a half-sarcastic tone asked, “Would a teddy bear make
you feel better?” I looked at her, tears rolling down my cheek and replied, “Yes. I know I’m 24
and I’ve done this before, but I’m scared of the unknown.” She came back with beautiful quilt
and I drifted off to the calm of anesthesia. When I woke up, my nurse looked down at me and
said, “You don’t need to be scared. You’re O.K.” In recovery, the doctors shared that there
appeared to be evidence of a small “shower” of pulmonary embolisms, and it was time to be
more aggressive with Warfarin. I was to spend the next several days recovering from the
procedure. I explained that on Saturday I had a plane to catch to Minnesota. He said no. I’m
stubborn. Two days after my heart catheterization, I got on that airplane. Some may think I was
running away from something, but in reality, I was running towards something.
My second summer at Camp Odayin changed my life. My recent “heart scare” gave me
perspective, a different view of camp and my role as a counselor. I had a camper so cyanotic
that she required 24/7 oxygen, and she rocked it with more grace and class than I could ever
imagine doing at 15. I had campers who showed off their scars
like badges of courage and honor at waterfront and when they
saw my scars they got excited that mine matched theirs. When I
told my campers and co-counselors that I couldn’t go horseback riding because my leg was still recovering from my heart catheterization, no one looked at me like I was “weak” or weird. They were just impressed that the night before I was piggybacking campers around the ball field. Growing up I was never bullied for having a heart defect, but I always had to explain myself. I had to explain why running was hard, why I needed an oxygen tank or why I had a scar down my chest. No, I wasn’t bullied, but I felt alone. This week, at camp, I didn’t feel alone. I felt like I belonged. I met several other counselors who were adults thriving with CHD. To this day I call them my heart family. The mission of Camp Odayin began to heal my heart that had been emotionally exposed in the OR. My spirit soared, because it was free. Free of explanation, free of judgement, free of worry.

I volunteered for three more summers before moving to Minnesota in 2013 and being offered a summer job on Camp Odayin leadership staff. Now I’m entering my 5 th summer as Summer Camp Co-Director. This isn’t an ordinary summer job, it’s a job full of summer fun! I get to kayak, ride pontoon boats with kids, sing songs, play games, go tubing behind speed boats, throw water balloons and roast marshmallows. At camp, I may act like a “big kid” but Camp Odayin is where I grew up. Ten years ago, I was scared to enter adulthood with CHD, I felt fear as the path of adulthood loomed in front of me…it looked dark, hollow and lonely.

When I first went to Camp Odayin I was struggling with my quarter-life crisis. I searched for people who could help me along the journey, to help me see the light within the tunnel of adulthood. When I left camp
that second summer, I left knowing what adulthood for a CHD looked like. It looked like me. I realized I am the light in the tunnel of adulthood. By living and continuing my journey, one day at a time, my experiences shine bright and illuminate the future, for my campers and other CHD survivors. Deep in my heart, where there was once a hollow, lonely feeling of fear and an emotional wound, there is now hope, joy and confidence. At Camp Odayin I have the most summer fun imaginable, a week to be the role model I once longed for. When I introduce myself to campers, I don’t tell them I have a congenital heart defect, I just introduce myself as Hoagie. My intention as Camp Co-Director is to be my most authentic self
and create a week where campers feel free to be themselves,
no explanation needed. If they notice my scar and bring it up,
I’ll share my heart story. If they just want to talk football, that’s
OK too. In the summer, we’re free to be and as we say each
night at Camp Odayin, “you can be happy if you let yourself be.”

 

 

Laura Hoagland was born with Tricuspid Atresia, Pulmonary Stenosis, VSD and and ASD. Laura has a single ventricle and had the Fontan procedure in 1991 at the age of six. If Laura is not at camp or in her classroom teaching you can find her adventure seeking and traveling. Laura lives by the motto, “half a heart, not half a life!”