What you can do for DMD

 

A Mother's Journey: Why Your Gift Matters This Labor Day

Three of my friends are navigating life with their sons diagnosed with Duchenne muscular dystrophy (DMD). THREE OF MY FRIENDS. Duchenne is a devastating muscle disease that causes loss of mobility, feeding oneself, breathing independently and eventually heart failure. As someone who has watched from the sidelines, I thought I understood their journeys. I was wrong.

In an attempt to honor what they carry daily—the weight that others rarely see—I wrote what I believed captured the experience of a mother navigating this diagnosis. When I shared those 600 words with one of them, asking for her thoughts, she returned them transformed into nearly 1,600 words. What she gave back wasn't just an edit; it was a window into a reality I could never have imagined on my own.

The Power of Research, The Need for Hope

If you grew up watching television, you likely remember Jerry Lewis and the MDA Labor Day Telethon—a tradition that spanned four decades and raised millions for muscular dystrophy research. But as the telethon faded from our screens over the past 15 years, so did much of the public awareness and funding that fueled critical research.

One mom didn't accept this decline quietly. In 2018, she began something powerful: she started praying specifically for researchers. Not just for a cure, not just for her son, but for the brilliant minds working tirelessly in laboratories, seeking breakthroughs that could change everything.

Today, her prayers are being answered in ways that seemed impossible just a few years ago. Her son is now participating in a drug trial that is making a noticeable positive impact. This isn't just hope—it's tangible progress happening right now.

Your Role in This Story

This Labor Day, I'm asking you to invest in the important work happening today: research that transforms lives. Behind every research grant, every clinical trial, every late night in a lab, there are real children and families whose futures hang in the balance.

My friend's prayers are for researchers, who need your support. The momentum building in Duchenne research needs your investment. You must partner with us to make hope a reality. CureDuchenne.org supports new research, early detection, and access to treatment.

Donate today at CureDuchenne.org

Learning to Water Ski

 

Bobbing in the water with the shoulders of my orange life jacket pushed up against the orange glow of my sun burnt cheeks, my dad’s voice came over my freckled shoulder as he told me to get the ski rope. I stretched out my hand as far as I could to try and grab the rope before it was out of reach, and my fingers clasped around the rubber handle just in time. I felt the tension of the rope tugging me sideways, and the tightly slotted rubber bindings on the skis nearly coming off my feet as the resistance of the water pushed against the top of the skis. At age 9, I was developing some new strength as I tried to circle my legs in front of me with one hand on the ski rope. Tucking my knees up to my chest, I finally could hold the rubber handle with both hands while my dad helped me keep the ski tips pointed to the sky.

“Take out the slack!” he hollered from behind me, but this message was not meant for me. My mom was at the wheel of the boat. We didn’t have a speed boat made for water sports. Just a bass fishing boat with an Evinrude 85 horsepower motor to draw us kids out of the water on youth size wooden water skis.

That motor had enough power to pull my mom or dad up when they would take a turn to ski. Dad would even slalom occasionally, inspiring us youngsters with his feat. We thought he was pretty amazing to get up on one ski and he may have thought so too.

Some say I take after my dad

Mom pushed the gear forward gently to pull the slack out of the rope between the boat and my rubber handle. I could feel myself moving forward, skis beginning to point any direction other than up to the sky, and my dad holding on to me. He somehow continued to help hold the skis steady pointed upward and mom called out from the boat, “Ready?” 

Dad calmly repeated the question in my ear, “You ready?” And I nervously nodded and answered, “Uh huh.” 

Dad yelled “Ready!” back at mom and she quickly pushed the gear full throttle. My arms stayed straight in front of me, clutching the rubber handle as water splashed in my face for what seemed like a full minute. I tightened my grip and bossed my legs and back to gain balance as the boat lifted me upward. I fumbled with more pressure on my left ski and feeling as if I was about to take a nosedive, I quickly and clumsily corrected and put more pressure on my right. There was a battle for balance going on between my left leg, right leg, back and arms as I fought to keep my skis in front of me and hold my breath amidst the unending splash. 

At last, I slipped, and my feet ripped out of the rubber bindings, sending my skis one direction and my body another. As soon as my head popped out of the water, I blew water out of my nose. I looked around for signs of the wooden skis as mom circled the boat and headed back to me. She could easily spot me as the orange life jacket was more shoulders than my head on the top of the water.

Dad captured one ski trying to escape and I managed to grab the tip of the other one just as my mom called from the boat, “Grab the rope!” I swung my head around to look for the camouflaged rope gliding across the water like a long, thin snake and took a few one-armed strokes to get a hold of it before the rubber handle passed me by.

“You want to try again?” my dad asked as he got close enough to help me manage the rope and skis. He floated near me ready to insert each foot in the bindings again. 

I answered, “Uh huh” and he tightened the slotted bindings around my heels. We worked to get in position again, struggling to balance the ski tips and rope and life jacket pushed up to my ears by this time. Mom took out the slack and dad helped hold the ski tips skyward as he hugged me from behind.

“Ready?” mom asked as she held her hand over her brow to try and see us with the sun behind us illuminating the water around us. 

This time I bravely called out, “Ready!” and within a second, I was battling for balance again, eyes sealed shut and breath held in the spray of water on my face. Holding on with all my strength, I felt like I was sitting on an imaginary chair that would collapse at any second. I finally started to straighten my back and keep my skis straight too. I was up. I was skiing. 

Cheers from my dad and cheers from the boat filled my senses as my life jacket slowly worked itself downward, resting on my shoulders and around my waist. We headed away from the sun and I could feel the warmth of it on my skin. I don’t know what was stronger in that moment…the rush of the wind or the rush of my accomplishment.

Dad and my brother behind the Evinrude

Like that day in the lake, my dad has been a steady force in my life many times since then. When I was nearly 16 my great grandfather died and the funeral was a two-day drive from home. I didn’t want to go. I didn’t want to deal with the pressure of assignments, missing instruction, and I didn’t know how to deal with loss. Dad came to my room and told me I needed to go. His instruction was direct, yet he showed understanding in how I was feeling. He taught me in that moment the importance of being present for others who are grieving and honoring a loved one.

My great grandfather, Papa Amis

A couple of years later it was time for college. “You ready?” Dad asked as he put the last of my bags in the car. We started the 14-hour drive, full of excitement for all that was ahead. Mom and dad helped get my dorm room unpacked, which didn’t take long with the little space I had in the 3-person room. Like that day in the water, when dad tightened the rubber bindings on my heels and helped hold the ski tips skyward, dad gave me what I needed and pointed my hopes and dreams to the sky.

Sitting at my desk in my dorm

In front of the dorm

Nearly 20 years into my marriage and 7 kids later, I had felt the cheers of my family many times over. There was a lot to celebrate between the day we unpacked my freshman dorm and the day we unpacked from our adoption trip to Colombia, adding 4 kids to the 3 that already called me mom. The warmth of my family's support has been like the warmth of the sun on my skin as I glided across the lake on those wooden skis that day I learned to ski.

Coming home from Colombia

As a parent, I sometimes felt like that little 9-year-old girl learning to water ski. Some days, caring for the ones God entrusted to me were much like clumsily battling for balance on those small wooden skis. I tried one thing and then overcorrected only to find myself underwater ripped from the tight rubber bindings. As the size of our family increased, the needs increased overwhelmingly. Like reaching for that ski rope, I often stretched out my hand, desperately grasping for the support we needed before it was too late. 

Now in my 50s, I have developed new strength with the help of a lot of people in the water with us throughout the years, but I can’t help thinking about that day my dad was in the lake with me. Sometimes during our darkest moments, dad has been nearby helping us manage the skis and rope of our lives. When I have felt hopeless or helpless, his presence speaks, “You want to try again?” Whether I feel like I am holding on with all my strength or holding my breath, he is there behind me, keeping my ski tips pointed to the sky.

A day on the lake wore me out

Dad and my older brother

Dad and my little brother

Dad and my sister and brother skiing

Boat upgrade

Dad and his first grandson

My dad

Last Year at Pine Cove

At camp, while kids were in their programming with their counselors, parents had some free time. Oftentimes, we would find ourselves on a cabin porch just talking with other parents. These spontaneous porch conversations were a highlight of the week every year. We didn't schedule them or need a notification to remind us, they just happened as we were unplugged from work, phones, and other tasks that would normally steal our time if at home. In 2021, I remember one porch talk about how we only had 3 more years of Pine Cove and I already felt sad about it. Interestingly by the time we entered camp for the last time in 2024, I had gone through much harder things to be sad about that I wasn’t sad about camp at all. 

I thought I would shed more tears with this goodbye, and sink into a depressed, "Now what?" But surprisingly I feel more joy and gratitude than any sadness.

One of the best decisions we made the last 3 years we went to camp was to invite our adult kids to join for at least part of the week. Our oldest son was working at camp already and the other kids that could make it, joined in the fun when they could - we included Wesley's soon-to-be fiance in 2023. She didn't know she rode in the same vehicle as her engagement ring on the way to camp! 

Our last year at camp, our two high schoolers were not able to be there. That was something we never anticipated and the things that prevented them from being at camp were the source of my deepest pain. Instead of canceling our registration, we decided to go even if it was just the two of us. We wanted to enjoy it one last time and say goodbye to friends and counselors we had grown up with the past 13 years.

Have I mentioned that getting to know the counselors was one of my favorite parts of camp? Many counselors would work at Pine Cove several summers while in college, so we would get to hear updates about their lives, relationships, and dreams when we reconnected each summer. We have had the opportunity to welcome some of these college students for dinner or an overnight stay, or even an internship with our company.

My favorite Pine Cove Counselor was our son, "Sledge of Allegiance." 

From our first year at Pine Cove, Wesley set his sights on becoming a Pine Cove counselor. Right after he graduated high school, he worked at camp as a Counselor in Training (CIT), and he went back to camp every summer until he graduated college. Sledge was a leader before he was on the leadership team. The last summer before he graduated college, he felt the pressure to do an internship instead of working at Pine Cove. He consulted with several people before making his decision and asked what we thought. We told him he has the rest of his life to work a real job. The families he served 10 weeks each summer would provide him more than enough recommendations as they witnessed his work ethic, passion and charisma. He had no problem securing a job after graduation, and he didn't even have to rely on his Pine Cove network.

He's the funniest accountant I know

Last time at Pine Cove 

2024 - drive to Pine Cove never looked like this before

Our 24-year-old daughter, Marian, came for the whole week. We had Katerin, Wes and his wife, Sarah, for part of the week too. Experiencing camp with our adult kids didn't take away the grief of missing our two youngest, but it was comforting to do family favorites again together -- Sundaes on Sunday, Banana boating, Sunset Cruise, Adult Pool Party, Banquet Night, games in the Summit, Breakfast Trail Ride, Water Aerobics, Impact Dance, and Family Devo. If you go to Pine Cove and have adult kids, I highly recommend inviting them back before your last time at camp!

Banana Boating

The Final Act

Favorite Holiday

Impact Dance

Breakfast Trailride

Water Aerobics

Games in the Summit

       

What was so fun about having our adult kids come back was that they appreciated our time together more and didn’t have the attitudes they once had as teenagers. We got to do all the fun things without the attitude! Speaking of attitude, one of the most awkward times at camp was that first year during Rite Night. 

Rite Night

Pine Cove has an evening where they set aside time for parents and their teens to connect. It alternates every three years between dad with daughters and mom with sons, mom with daughters and dad with sons, and then both parents with all the teens. Our first year, Rite Night was with dad and daughters so Jeremy had all three teenage girls for the activity. And they were not having it…well at least not our Colombian daughters. Part of their time together was a Dad and Daughter Dance. Marian and Katerin were like, “No.” You didn’t have to speak Spanish to understand that! Meanwhile, Emily was eating it up. She was 14 and had just experienced the past 10 months of sharing mom and dad with her new siblings and not getting as much attention that she was accustomed to. She took her dance with dad and Katerin’s and Marian’s dance too. They were happy to pass!

2016 went much better than 2013

Although we didn't participate in Rite Night our last year at camp, Marian and Katerin had lots of time with just mom and dad. No awkwardness. No attitude. Just enjoying our time and creating new memories. One thing I am learning as my kids are all young adults is that if we messed up or missed opportunities before they turned 18 and were living at home, it's not too late to offer connection and build better relationships now. We have the rest of our lives to work on attachment - it isn't constrained to only the first 18 years of their lives. 

 

I don’t know of any other place that welcomes you with jumping and cheering like opening day at Pine Cove. Maybe when the kids were little and you came home from work to excited little toddlers greeting you at the door could be a close second. The difference is that when the jumping stops, the Pine Cove counselors serve you all week and toddlers don’t.  Pine Cove Family Camp will always be one of my favorite places in the world and I will miss it. 

I got to take a break from many of my mom roles while at camp - meal planner, cook, activities director, referee - the load these roles brought was shared with other counselors pouring into my kids and me. I felt cared for. I felt loved. I got a little rest from carrying it alone. A lot of years, camp felt like a safe landing place, and sometimes it felt like we glided into the week with both wings on fire. The nourishment I received at camp helped sustain me the other 51 weeks of the year.

Family Devo 2017

I don’t think we would have ever gone if it had not been gifted to us and to that family, I am forever grateful. Pine Cove was not just a highlight of our summer, but a place where our family could connect and enjoy each other. It helped shape our family time. It showed my kids what is most important - we belong to a God who is loving, kind, good, and so much fun.

2016

One Rainy Banquet Night

Thursday night is always Banquet Night at Pine Cove. This means parents get a quiet dinner with friends while the kids enjoy more time with their counselors. 

2023

We usually got one big rain while at Pine Cove in late June every year. Although I can recall a few occasions of torrential downpours at camp, one memory reigns in my mind. It was right before Banquet Night started.

Rain was coming down in sheets so fast the sidewalks were beginning to flood. It was a real frog strangler.  While I was getting ready for dinner, Jeremy decided he would go find an umbrella. What a gentleman! As he ran into the deluge, he called across campus to another couple walking to dinner under cover and asked where they got the umbrella. They answered, “The Cove!”  The Cove is where parents drop off their babies and toddlers at scheduled times that correlate with the kids and teens programming. Jeremy got to the Cove but the doors were locked. He stood there saturated and knocked, but no one opened the door. He noticed one of the counselors peeping through the window, her eyes widening as she stared at this soaking wet man standing outside the door with NO shirt on! Jeremy hadn't wanted to get his shirt wet, so he took it off before he left our cabin. I had no idea. He tried to communicate through the window that he was looking for an umbrella using his best charades. The girl on the other side of the glass finally shook her head no and walked away.

Feeling perplexed and quite waterlogged, Jeremy remembered they often kept a few umbrellas at the Summit where we meet for meals so he trotted upstream to the Summit lobby. When he got there, nicely dressed couples were already starting to gather. He approached the porch in just his shorts and his slides. He was drenched and everyone was looking at him in equal parts amusement and disbelief. He took one of the dripping umbrellas under the porch, unintentionally slung water on innocent bystanders as he opened it like it was a splash zone, and then he headed back down the hill to our cabin. I’m not sure what the point of using it was on his way back since he was soaked through and through by that time. But he did and there was no lack of comments from other couples as they splashed their way to dinner and passed by this wet, shirtless gentleman. One good friend managed to snap a photo of him walking back to our cabin.

2021

By the time he arrived I was ready to go. When he walked in our cabin he looked like a beached whale that just washed up to shore. My eyes and mouth were probably as wide as those of the Cove girls. I could not believe he left without a shirt on! Defensively, he argued that just an hour ago he was without a shirt at the pool with all of these same friends, and he didn’t want to get his nice shirt sopping wet. I relented but I thought he could have still put on a T-shirt.

Later our friend laughingly showed us the photo of him walking back to our cabin with the umbrella and no shirt. She said that was the highlight of her whole week – she hadn’t laughed that hard in a long time. What she didn’t know was that photo would inspire Jeremy to lose the extra pounds and recreate the photo a year later.

Tomorrow in one final post about Pine Cove, I'll share how our last year at camp looked much different than the first.

In My Pine Cove Era

Thirteen years later, we hold very dear the traditions, the predictability of the schedule, worship songs, repeated cheers, and most importantly, the relationships of family camp. But that first year, nothing was predictable. We had never experienced anything like it as a family.

2013

It was new for all of us, and I think that is one reason Pine Cove became an annual event for us. It was one of the few things that ALL of us experienced for the FIRST time TOGETHER. And it was amazing and fun and life-giving and faith-building. It was an opportunity to experience something like church camp, the place where I learned that God is so much fun, with my family.

First family photo at camp 2013

Breakdown of a week at Family Camp

The Monday of camp was when our kids got to be with their counselors (aka the hyped up college students that were surrounding our van upon arrival) doing all kinds of fun things throughout the day, including the most important, strongest part of the day, BIBLE STUDY! 

2017

2022

Moms and dads headed to Speaker Session, woop woop, Speaker Session. If any readers have been to family camp they will catch all of the references to cheers. You just can’t help it if you have been there! What I loved about the first day at Speaker Session was that it was a time we got to know other parents at camp on a deeper level through an activity called High-Low. For parents that had been to camp before, it was a chance for us to hear an abbreviated update of their year with the best and worst thing vulnerably shared. With new parents, I was always amazed at their courage to jump right in and entrust their high and low of the year with brand new friends.

My kids started connecting quickly with their counselors and new friends that first year (and each year after). Apprehension subsided and was replaced with enthusiasm that by the end of the week nearly matched the energy of their leaders.

2013

2015

2018

2021

2022

We shared meals around a table as a family, but many times, we found one or two kids sitting with other families to be next to their new best friend or favorite counselor.

Dinner time 2015

Monday night was also the first theme night. We didn’t know what a big deal this was and I don’t remember what many of them were, but we managed to kind of get in the groove with most theme nights by our 13^th year. Every year, The Bluffs would announce the 3 theme nights well in advance so that families could come prepared. Some of us tried harder than others if the theme was something we were excited about. When I say some, I mean most of my kids got into it and I usually found a T-shirt at Walmart the day before camp that would work. 

Ninjas and Night-Nights 2022

On theme nights, which took place on Monday, Wednesday and Friday night, counselors would go all out in decorating and planning games and activities to go along with the theme at dinner time and after. Some of my favorites were The Night at the Museum, Tacky Prom, and Rodeo Night.

Night at the Museum 2023

Rodeo Night 2013

Wednesday nights always included the best talent show you’ll ever attend. There was no bad act when counselors and families stood ready to cheer “G-double O-D-J-O-B, good job, good job!” after every performance. Even the most timid kid would gain the confidence to go on stage and feel completely accepted and valued. 

2014

2021

Friday nights included a cookout and carnival games and the annual Counselors vs. Campers game of basketball or flag football. According to my recollection, I have to admit that in the 13 years we went to Pine Cove, counselors always won.

2024

Two of the highlights of the week were at the beginning and the end. Counselors shared their talents as they would compose and perform the Opening Song that included all of the “guidelines for fun having” (rules) and other important info to the tune of songs like, “Thank God I’m a Country Boy” by John Denver or “Hello” by Adele. We always looked forward to what they came up with.

2023 Program Director
Singing the Opening Song
Wes served 5 summers at Pine Cove

At the end of the week, counselors shared CQs with their camper and their parents. CQs are Character Qualities that the counselor observed in the kids all week and then affirmed them verbally at the close of the week. I have saved every CQ card from every camp.

Next post is a little story about Jeremy providing some extra entertainment one Banquet Night...