Month: November 2019

The Popcorn Farmer Storybook

Page of The Popcorn Farmer Paper Children's Storybook
~ Megan

The Popcorn Farmer is the second family history paper children’s storybook I created. It is in honor of my maternal grandparents, Vern and Sybil Bryson. I grew up on their farm and loved it. Well, loved most of it. 😉 I knew the next generation really wouldn’t remember “Great Nana/Grand Nan” and Grandpa died before any of them were born. I really wanted them to be able to know a little about these wonderful and generous people.

The title comes from a beautiful tribute to Grandpa written by a family friend. Grandpa was an actual genius and did a lot of amazing things in his life, yet he found meaning and fulfillment being a farmer/rancher and growing produce, especially corn (soooo much corn!), that he and Nana shared with the community. Hence, he became “The Popcorn Farmer.”

The Story
  • Cover of The Popcorn Farmer, featuring large popped popcorn.
  • The Popcorn Farmer by Megan McGrath
  • Once a long time ago, a boy named Vern Bryson was born on a farm in Utah.
  • As Vern grew up he dreamed of being a farmer. He loved farming and farm animals. But Vern was also very, very smart. So he went to college at BYU and studied engineering.
  • While Vern was in college, World War II started. Vern was very brave and signed up to be a pilot in the Air Force.
  • Even though it was scary, Vern worked very hard and became a very good pilot and flew huge bomber planes all over Europe.
  • Vern was such a good pilot he tought other people how to be pilots.
  • He even received a special award called the Distinguished Flying Cross for being such a good pilot.
  • Vern met a beautiful, smart, and gifted musician named Sybil. They fell in love and soon married in the Salt Lake City, Utah Temple.
  • Vern and Sybil had five kids: Britt, Forest, Craig, Nadine, and Elaine.
  • When the war was over, Vern began working as an Aeronautical Engineer, helping to develop nuclear engines like those used in submarines.
  • Vern also worked to design better airplanes.
  • When Vern retired, the family moved to a farm in California. It was beautiful there. They had lots of horses, cows, sheep, chickens, and pigs.
  • But some of the best spots on the farm were the giant gardens and orchards.
  • There were all sorts of goodies growing in the gardens. Everything from beets and blackberries, to carrots, grapes, green beans, onnions, raspberries, strawberries, peaches and pumpkins, plums, peppers, and even zucchini.
  • There were so many kinds of fruits and vegetables!
  • But the best was the corn. There were rows and rows and rows of corn! Vern and Sybil’s grandkids loved to run and play hide and seek among all the rows of corn. The corn was so delicious! Sweet, delicious, golden corn on the cob.
  • Each year, Sybil would set aside special ears of corn to dry. When the corn kernels were all dry, they were ready to be cooked into popcorn!
  • Vern and Sybil always grew more fruits and vegetables than the family needed. They loved to load up the convertible with all the fresh produce and take it to church to give it away to everyone. But all the children’s favorite was the homegrown popcorn!
  • Vern and Sybil were kind and generous sharing their food, time, and energy helping all those they could.
  • So, whenever you eat popcorn, you can think of Grandpa Vern and Nana Sybil and their great example. The End.
Some fun facts about this book
  • The plane featured on Page 3-4 (with Europe) is actually one of the planes he flew. I used the trace feature in the Silhouette Design Studio program to create the cut file.
  • A photo of the actual medal that Vern received is shown on his uniform on page 6. I used the Print and Cut feature of the Silhouette Design Studio to cut this out. I also recreated his uniform insignias on his cap and uniform. Did you notice his little wings? So cute. 🙂
  • The diagram on Page 9 is actually a simplified diagram of a nuclear engine. The one Vern helped design! I used the pen adapter to have my Silhouette Cameo draw it. Such a fun detail to include.
  • The animals and fruits and vegetables depicted in the story were all actually grown and raised on the farm, but our barn was not red–it was boring metal gray ;).
  • Grandpa really did wear a straw cowboy hat and denim overalls almost every day of my childhood, usually with a white t-shirt.
  • The cover has several large popped popcorn kernels in the center photo spot.
  • My grandma, after seeing the book, heaved a sigh of relief and said, “I’m so glad that part of my life is over and I don’t have to can anymore.” Hahaha. Thanks, Nana? 😂😂
Supplies Used

I had so so much fun making “The Popcorn Farmer.” It meant so much to tell this story and share it with my family, especially my sweet Nana. And I love to read it to my sweet nieces and nephews.

Do you have a favorite family story? How can you share it with your family in a meaningful way?

Thanks for reading! xoxo

Check out two other stories I’ve written: “Margaret’s Butterflies” & “The Golden Ship“

Margaret’s Butterflies Storybook

Page of Margaret' Butterflies Paper Children's Storybook
~ Megan

I love family stories. As a child, being told family stories anchored and tied me to something bigger than myself. The stories told me who I was when I wasn’t sure how I fit into the world. They helped me navigate a really hard time. The most meaningful story to me was that of Margaret’s Butterflies. 

When I started having nieces and nephews, I knew I wanted them to have this same connection to our family that I had–that they were loved so much by so many that had come before them. And as a book lover, I thought making a cute storybook would be a way to share the story with them. 

The first storybook I wanted to make was was about Grandma Margaret Bryson. She’s my 4th Great Grandmother and a complete inspiration to me. I can’t wait to meet her on the other side of the veil.

This is part of her story
  • The cover of the book, featuring a pink butterfly.
  • Margaret’s Butterflies Retold by Megan McGrath
  • A long time ago there was a girl named Margaret.
  • She lived in a small time in Northern Ireland called Banbridge.
  • Margaret got married and had a baby boy named Sam. She was so happy. She loved her little boy so much.
  • Margaret’s husband, John, was in the army and never came home. This was hard for her to be all alone. But Margaret was strong and had faith in Heavenly Father so she raised Sam all by herself.
  • Sam grew up into a happy and handsome man. He also joined the army. This made Margaret sad. She worried he would never come home.
  • Whenever she would get worried, she would say a prayer to Heavenly Father. Then she would feel peaceful and that Sam was okay wherever he was.
  • One night when Margaret was feeling lonely and particularly worried about Sam, she said a prayer to Heavenly Father for extra peace in her heart. That night when she fell asleep, she had a very special dream.
  • In the dream, she was worried about Sam. Then one butterfly flew out of her heart.
  • Then two butterflies flew out
  • Then 20 butterflies flew out.
  • Then lots more butterflies flew out until there was too many to count.
  • Margaret woke up and knew the first butterfly was her boy Sam. The rest of the butterflies represented her grandchildren, great grandchildren all through the future generations. She loved all those little butterflies in her dream.
  • She didn’t know how so many butterflies would be her family, but she knew that Heavenly Father had given her this special dream as a gift. She had faith that He would fulfill this promise He had given her through her dream.
  • Whenever Margaret was feeling sad or lonely she thought of that dream and felt peace in her heart that Heavenly Father knew her and loved her.
  • Eventually Sam came home from the army and married a beautiful girl named Sarah. They had 11 children. Later Sam also married Isabella and they had 9 children. Margaret had 20 grandchildren.
  • Each of those grandchildren had children and grandchildren all the way down to you. You are one of those beautiful butterflies that Margaret dreamed about.
  • Margaret knew you and loved you a really long time ago–before your grandparents were even born.
  • Heavenly Father also knows and loves you. He will give you peace and comfort whenever you are scared and lonely, just like he did for Grandma Margaret.
  • Always remember you are one of Grandma Margaret’s butterflies. You have a family who loves you forever. And because Heavenly Father loves us so much, this isn’t The End of the story.

The original book is made of scrapbook paper scraps I had. Part of my goal with this project was to only use materials I already had on hand. Fortunately, I had my favorite tool to help me: my trusty Silhouette Cameo.

Supplies used:
How I Made the Book

To create a copy of the book, I took photos of the pages and uploaded them to Shutterfly and created an 8×8” photobook. You can see the finished photo book here, and even order a copy for yourself (no, I don’t get anything from the sale of the book from Shutterfly and make sure you look for a coupon, sometimes you can get the book for free and just pay shipping).

As I’ve shared this story with people, it’s been fun to “meet” cousins– other of Margaret’s butterflies– and be able to share this story with them. Some of them didn’t know about the events in the story. 

I’ve loved sharing this story with the next generation. My nieces and nephews have loved learning about their family and knowing how they fit into our family.

How can you learn and share stories about your ancestors?

Check out two other stories I’ve written: “The Popcorn Farmer” & “The Golden Ship”

Life on the Edge

Person standing on the edge of a mountain cliff. The sun is sitting on the horizon just below the mountain
~ Megan
Photo taken in Yosemite National Park ♥ Photo by Leio McLaren (leiomclaren) on Unsplash

I live life on the edge.

The edge of an allergic reaction.

The edge of medical science.

The edge of an unknown, looming, black abyss.

The edge of fear.

The edge of faith.

I’m not an “edge” type of girl. I am terrified of falling. Heights have always scared me. I have always clung to the known, the safe, the solid.

I don’t have that luxury anymore.

I have been aggressively attacking my rare diseases since I was diagnosed in 2015. Each day, each doctor’s appointment, I’ve been inching closer to the edge, knowing at some point we were going to max out my options. At a recent appointment with one of my specialists, we were discussing next steps.

Reality Check

“We don’t have a lot left we can do, Megan. There’s so much we don’t know about how your condition works or how to get it to stop reacting to everything. It’s just so complicated,” my wonderful GI doctor said. “You live on the cutting edge of medicine and science.”

I sighed. I know.

During my entire childhood through college, I knew, KNEW, I was going to be a scientist. I knew that I wanted to live on the exciting, cutting edge of medicine and science–as a researcher. Working on cures for devastating conditions like Alzheimer’s disease.

Not as a patient. It never even once crossed my mind. And it’s definitely not exciting on this end of the equation. 

But then God had other plans. He knew. Knew that I was going to need that basic understanding of biology because I was going to be the one with a devastating, ill-understood condition. It was heartbreaking when I didn’t get jobs in research and ended up working as a paralegal. As much as I have come to enjoy law (which surprised me), I still miss molecular biology.  Until three years ago, all I used my degree for was to successfully keep my office plants alive. Now the reason I studied it for so long are obvious and I have been so grateful for that basic knowledge.

A week after the conversation with my GI doctor, I met with my immunologist, also a wonderful doctor (I’ve been so blessed). “I think we’re pretty much capped out on you, Megan. You’re already on all max doses of all the medications. I don’t have any more treatment options unless we decide to do chemotherapy. And I don’t think the side effects are worth it at this point,” he said. “I know you’ve still got symptoms, but you’re stable now. We’re going to have to wait until more treatment options are available, or your condition changes.”

I sighed again. I know. And I agreed.

Stable doesn’t mean cured, fixed, or better. It means I’m not getting catastrophically worse at the moment. I am certainly better than I was three years ago. But it means I still am sick. Still have severe allergic reactions. Still have the risk of anaphylaxis at any moment. Still might end up in the hospital. Still might get worse. Still might need chemo. Still might die from this.

I’m at the point where I’m tired of fighting my body and need a break anyway. It’s been a hard year so far. Adding in weekly immunoglobulin therapy has been more difficult than I expected. I’m exhausted–physically and emotionally.

I told both of the doctors this at the appointments. They both nodded in support and encouraged me to take a break from pushing my body and my spirit. “It’s okay to take a break. You’ve worked really hard at this for a long time. Take some time to just live. Let’s see you in six months and we’ll see where you’re at,” they both said.

I sighed. Okay.

I was afraid this day was going to come. I’ve spent three years fighting so hard to improve. Once I knew what was wrong, I had something to fight against. And I’m a good fighter. I was absolutely sure I could get better (even when my doctor wasn’t sure). And I have gotten better. I’ve improved significantly. My doctors remind me of this at every appointment. But, improvement does not equal “fixed.” They remind me of that too.

This time I hear Reality slapping and screaming at me, “There is no cure for this. You’ll be like this for the rest of your life.”

It is crushing.

I already knew it, of course, intellectually anyway. I knew it the day I got my diagnosis three years ago, but it was still devastating to hear it now, again. To feel it. To feel the thick, black emptiness below me slowly reaching for my dangling feet, ready to suck me in at any moment.

I take a deep breath. I can do this. I can keep going. I can make it six more months.

I mark time by doctor’s appointments now. Every six months. Monthly shots. Weekly infusions. Daily pills. Living in six-month windows. I’m not able to see beyond that. And some days, barely able to see tomorrow. I worry this is how the rest of my life will be like.

Reactions

Every moment I live with a fear that I’m going to have an allergic reaction. I recently walked into a lovely shop and before I even got to the entrance, I could smell a sweet perfume emanating from the store. It was too strong for me. I wore my mask, hoping it would be enough. I quickly went in and made my purchase and left the store, practically holding my breath the whole time. Praying I would not have a reaction. I’ve learned not all prayers are answered the way we want. (Also, online shopping is my favorite. No smelly stores!)

By the time I went to my next stop, one block away, I could tell I was having a reaction. A headache exploded in my skull. My GI tract was suddenly very angry at me. I was nauseous, congested, dizzy, achy, exhausted, and anxious. The bright sunlight triggered hives and diffuse itchiness. I scrambled to find my nausea medication which helps, but it’s not a cure-all. I needed benadryl. And sleep. Lots of it. But I still had a play to go to that afternoon, and a five-hour infusion to do after that. I didn’t want a reaction to stop me from living my life. I repeated my mantra to myself, “Just breathe. Slow, deep breath. Just breathe. You’ll be okay.”

I made it to the play and took some Tylenol, and hoped no one sitting near me would be wearing something scented. The play was enjoyable and I wore my mask the whole time. Naturally, I got weird looks from most people around me. I smiled and winked at the kids who stared. Hopefully communicating that I wasn’t a scary monster. Most smiled back.

I slept for the rest of the weekend. Just two stores and a play were too much for my broken body that day. Some days I can do more, some days I’m only able to do the bare minimum to survive.

Life on the Edge of the Cliff

I cling desperately to edge of my cliff, feet dangling precariously above a vast, inky black sea of nothing. Fingers curled tightly into any crevasse that may give me hold so I don’t slip. The rest of my life spread out in front of me. A giant black void of nothing. It’s all I’ve seen the past few years. Not even the glimmer of a faint star in the sky. My wonderful, brilliant doctors don’t know how to help me anymore. I don’t know how to help me anymore. I don’t know what my future holds. Staring at the empty black is terrifying. I squeeze my eyes tightly against the black so it doesn’t sink into my soul. 

But sometimes I bravely open my eyes wide and stare, searching, reaching for a light in the mist. And sometimes I glimpse it, one step forward. One step enough for me.

I am not hopeless.

Attitude is Everything

A friend recently told me she can’t believe I have such a good attitude with all of this going on. I shrugged my shoulders, not sure how to respond. I don’t know that I have a great attitude about it, but complaining doesn’t help anyone. Just makes everyone around me miserable too. (Though I still do complain sometimes!) Laughing at myself is much more entertaining anyway.

What else can I do? I might sit on a cliff, dangling above an unknown future…but doesn’t everyone? No one knows their future. Everyone has struggles of some kind. Everyone is fighting unseen battles. Mine are of the weird, expensive, medical variety. Some might have family or financial struggles. Others may have difficulties at work. You might have something completely different. But my “rare” struggles don’t make me more special, or more admirable, just because they are unique.

We are all here on Earth to help and lift each other up during our struggles. Heaven knows it’s difficult, maybe even seemingly impossible some days. But I can, at least, smile at someone today. Even if that someone is just myself staring back in the mirror.

I have hope in better days yet to come.

I have hope in seeing through the black fog to the sun rising above the beautiful valley below.

I have hope that from my perspective on the edge that I’ll be able to see how far how I’ve come and the wonderful, beautiful future I have going forward.

I have hope in a bright, happy future when all pain and suffering no longer exist.

I have faith I’ll be there to enjoy that feeling.

I’ll close my eyes and bask in the happy, warm sunlight of that moment.

_____

[A version of this article was published on The Mighty, a website for people with chronic illnesses, in February 2019. It was originally written in July 2018.]

Finding My Voice

~ Megan
Photo of the 400+ Rare Disease Legislative Advocates. Photo courtesy of EveryLife Foundation.

I don’t know why it’s so hard to believe I’m allowed to have a voice. Actually, believing I have a voice isn’t the problem. Its believing I have a voice worth listening to…that’s where I struggle. Believing that my experience has value to others and that sharing it can help others is a little mind-blowing to me.

I grew up very stubborn (my mom just burst out laughing). I had no problem voicing my opinion, particularly when it was contrary to a parent. A trait neither of my parents appreciated. Ha.

Eventually, I learned sometimes screaming your opinion doesn’t convince people you’re right (who knew?!). And so I shut up. Literally. I just stopped sharing my opinion. No one seemed to care what I thought, so why even bother? If there was a group of people talking, I was generally ignored, talked over, put down, or interrupted when I spoke up. So I just stopped. Even now, if there’s a group of people, I probably won’t say anything, unless it’s my family or very close friends. 

Earlier this year I stepped WAY out of my comfort zone and went to the Rare Disease Legislative Advocates conference in Washington DC where the whole point was to share my story with members of Congress and their staffers. WHAT THE HECK WAS I THINKING?! 

The Nevada Advocates “momma bears” and I on the Capitol Building Steps between meetings with Legislators.

As terrifying as it was, it was also incredibly empowering and liberating. I met incredible people using their voices to make actual changes in their home states that impacted real people. I was partnered with an older gentleman that was also from Utah, and we were grouped with three incredible mothers from Las Vegas who created organizations to support the Sickle Cell patient community in Nevada. 

Watching these 4 individuals share their stories of how they’ve taken the hardest things life has thrown at them and they’ve turned them into a crusade to benefit others was awe-inspiring and powerful. 

Other Masties and I! It was so fun to meet them in person and hear their stories. And be reminded that I’m not alone in my struggles. And isn’t that why we share our stories?

I was also able to meet other people with the same condition as me! It was amazing! And we bonded over our bodies’ mutual disdain for direct sunlight and chlorine (swimming is generally a no-go for me, lol). 

My story matters. Sharing my story matters too. 

Your story matters. Sharing your story matters too. Find a platform to share your story. Maybe it’s telling your kids (or nieces and nephews) verbally about your grand adventures as a child to them as they fall asleep at night. Maybe it’s a scrapbook or photo album. Maybe it’s a Facebook post, a blog, an online video. Maybe it’s a private journal. Maybe it’s shouting it from the rooftops. 

The how doesn’t really matter. What matters is that you share what makes you, YOU. Share what matters to you. Share why it matters. 

Actually it was this conference and sharing my story that reminded me how much I’ve missed sharing. That I’ve missed having a blog. A place to tell my story. Share my triumphs and hilarious missteps. So here we are. 

I am here. 

I have a voice. 

And I’m going to share my story.

Hello, World!

Road winding through fall forest. The leaves of the trees are green, orange, red, and yellow.
~ Megan

Hello, World! Once upon a time, I had a blog. It was so fun for me, but after a rough year, I stopped and didn’t pick it up again. Then I got sick. Again. My plate suddenly got really full trying to manage a serious, life-altering disease. It was really easy to narrow my world and just focus on that. 

Then, earlier this year I attended an amazing rare disease conference and was inspired to share my voice. So here I am, being brave and sharing my voice again. 
—

My adventures in crafting, especially paper crafting, began at 13/14 when I got very sick and missed a lot of school. As a child, I loved walking the aisles of office supply stores. The pens! The highlighters! The rulers! The planners! The paper! All the organization helps! Oh goodness, it’s a really good thing I didn’t know about or go into craft stores. I would have fainted from pure joy. Smart move, Mom! Ha! 

But then, my mom claims she made the “worst mistake of her life*” when she bought me a pack of fancy printed scrapbook papers, scissors, and glue to keep me entertained while I was sick. My obsession with scrapbooking, documenting life, and crafting began. I could turn that paper into anything my imagination could think of, just using scissors and glue! 

It took a long time to figure out what made me sick when I was 13/14, but in 2015, 16 years later, I finally got answers when I was diagnosed with Mast Cell Activation Syndrome (MCAS) after a series of worsening allergic reactions, including several rounds of anaphylaxis. Since then we’ve also found out that I have dysautonomia (likely POTS, but I was having a good day when we did the testing), and a Primary Immunodeficiency (Specific Antibody Deficiency). Basically all this means my immune system is broken in a few different ways and I’m taking on a lot of medications to keep me from going into anaphylaxis. Good times!

I craft to keep myself sane as I deal with my complicated body. And I try to get out and adventure when my body is up to it. The photo above is from a recent drive up a canyon to see the fall foliage. So beautiful!

So, Hello World! I hope you’ll join me and follow along!

*that’s an accurate quote I’ve heard multiple times, hahaha!