Our Journey

SEPTEMBER 9, 2023

My Values

To help live a more fulfilling life you need to understand your own values. I feel a lot of companies write their values based on what they think people want to hear. I want my company to really believe in our values. I read the book The Values Factor by John Demartini. This book is full of good information and has some good exercises to help you discover your true values. I want everyone I hire to understand and belive in my values for Joyful Fighter. I made a poster to put at my desk to remind myself to be true them.

Here is what I came up with.

Joyful: This is the whole mission of my company. I want to help families be more joyful. Bringing people joy brings me so much joy.

Making Memories: I love creating memories with my family and friends. Giving experiences as gifts over items is something I like to do. I want to help create that happy memory in the hospital. Candice loved to play dress up. This is a memory that I will cherish forever. Nurses coming in to play dress up with us. People on her support page would vote for what dress she was going to wear. We would celebrate all holidays even if you were in the hospital. You don’t have to be home to create a beautiful memory.

Helping Heart: My parents definitely helped in instilling this value in me. They were always signing up to volunteer for church events, bake sales, girl scouts. You don’t need to be rich to help others. You just need to be a kind person.

Worldly: I love to travel and see new places. Some of my favorite vacations were the long road trips and all the great memories we created. For my business I want to be worldly in the way of spreading joy around the world. I want to have my books translated in different languages. I want my hospital gowns to be everywhere. I not only want to help the people in my community but be known around the world.

SEPTEMBER 9, 2023

Never give up on my dreams

I closed my business in 2018. Not because I wanted to give up. I just need help in figuring out how to make this happen. I decided to attend a luncheon with National Association of Women Business Owners. This lunch was at the I Heart Radio office in downtown Las Vegas. They had a wonderful panel of speakers. Women in the news, radio, and marketing. We went around the room introducing ourselves and talking about our businesses. So many people came to talk to me and want to help. I needed this support and encouragement. This was the first time at a luncheon that there was a nonprofit here to talk about what they do, and a portion of the money raised at the lunch was going to them. Well, they could not have picked a more perfect nonprofit. Win Win Entertainment. This is an organization that brings entertainment into Children’s Hospitals around the country. I love this. I talked to the man who started this and the woman who works with him. Such big hearts and talking to them was a reminder to not give up on my dreams. Children with medical needs and their families need this. They need to feel comfort and joy while in the hospital.

I don’t care how long it takes; I’m making this happen.

JUNE 19, 2021

The importance of Joy

I love the word, Joy! It just brings a smile to my face to say the word. Life is hard and it can swallow you up if you let it. You cannot let the tough times be all you think about. I honestly believe that you can find something in your day to be joyful for even on your hardest days. I know this is not easy every day. But it is not impossible. It does not have to be anything amazing. It can be small and still bring you happiness. Changing my mindset to joy instead of sadness helps make my day better. Ending the day thinking about the good is important to me. When I fall asleep at night I want to feel at peace and full of joy. If I go to sleep thinking about what brought me joy I sleep better and wake up with a more positive attitude.

Here are some quotes about joy that I love.

“Joy is what happens to us when we allow ourselves to recognize how good things really are.”
- Marianne Williamson

“The world is full of negativity, and a lot of judgment. I just think people need to start shifting into joy and happiness. As corny as it sounds, we need to make a shift.”
- Ellen DeGeneres

“It is only sorrow bad weather masters us, in joy we face the storm and defy it.”
- Amelia Barr

“Find Joy in everything you do. Every joy, relationship, home... it’s your resposibility to love it or change it.”
- Chuck Palahniuk

OCTOBER 6, 2020

Tissues, my favorite thing to donate

People love to donate to the Children’s hospital. When you think about donating you think about books, games, and art supplies. Yes, these are great. I love to donate these items too. But my favorite thing to donate is tissues. It may sound silly, and I got some strange looks at the store when filling a shopping cart with tissues. I just could not stand crying in the hospital, being brought into the quiet room to be given sad news then handed what felt like cardboard to wipe my tears away. Soft tissues are not something of a priority when the hospital is placing their supply order. To a parent this felt like you don’t care about my feelings. Some parents are given news that is scary and life changing. All you want is comfort because there is nothing else that can be done. So, a soft tissue is like a gift. When I donate tissues, I find the best soft lotion filled tissues I can find. Then my daughter and I write happy messages on the boxes and decorate them with stickers. You don’t need to spend money on flowers and balloons. I just wanted soft tissues and a good cup of coffee.

MAY 1st, 2019

Helping others helps my soul

Spending my time volunteering and doing things to help improve the hospital experience for other families helps me heal. When you are in the hospital with your child it is overwhelming. You may be angry about things or thinking you wish you had something better but there are more important things going on. You need your child healthy and home. Now looking back at my time in the hospital I know what families want and want to help them have a positive experience.

Texas Children’s Hospital is the largest Children’s Hospital in the US. The nonprofit Radio Lollipop is there. This organization is so cool. They run a radio station that is broadcast to the children’s hospital rooms. Kids can call in and request songs, play games, and win prizes. I decided to reach out and fly to Texas to learn more about it. I want to bring this to Vegas.

When I arrived, I was given a tour of the Children’s Hospital. This place is amazing and offers so much to families. They have a salon, a library, cool rooms for kids and a separate one for teens. They also have a classroom for kids. I helped with setting up the care cart that would be pushed around to the patient's rooms to bring art projects. I love arts and crafts. This is such a fun idea. Every day they have a different activity. We went from room to room bringing kids the materials they needed to do the art project. Seeing their faces light up when we bring them something or hearing them call into the radio was healing for me. I could see how much this is helping with their recovery. They need to feel like life is normal. Child Life specialists have care carts and can bring children games and art stuff. But this was different. Calling into a radio station was a fun thing I loved to do as a teen. Winning prizes and getting to hear your favorite songs. I always tried to make my daughter’s time in the hospital not feel like we were in the hospital. Getting to volunteer here and helping to brighten their day was such a gift for me. I hope to bring one day something like this to our Children’s Hospital.

MARCH 13, 2018

Grief

This pain is something different. You feel like no one understands. The best thing someone said to me was from another mother who lost her child. “Don’t let anyone tell you how you should feel.” People never know what to say but love to give their advice. I know that people mean well. So, I am polite and listen and say thank you. Deep down I want to tell them to just stop talking. I only need you to listen.

Grief is like the ocean. At times it is calm, and the day is beautiful. Then the storm hits and the waves of sadness and anger crash into me like the day I lost Candice. The pain of losing a child is different. I lost my mother when I was 20 years old. Losing a parent is awful. My mother was an incredible woman. I know what that pain feels like. This pain is different. Losing your child is not supposed to happen. It’s unfair, it’s wrong. It changes you. Life will never be the same.

Having another child does not take away any of the pain. But it does help. It helps me to get out of bed, to make food, to do normal daily activities. Children feel grief differently. This was hard for me to understand. Jasmine lost her sibling, her little best friend. Why does she not cry like I do? How can she keep going? I thank God she is a sweet innocent child who doesn’t feel how I feel. Adults understand death differently. Talking to Jasmine about how beautiful heaven is, how Candice is not in pain, and that she is with Nanna. It comforts her to hear this. I wish I could feel that comfort. I am told all the time that time will heal. I do not believe grief will ever heal or go away. I do believe some day the pain will be less and moving through life will not be so hard.

DECEMBER 26, 2017

26 Days of Spreading Joy Campaign

Today, I am so honored to announce Joyful Fighter Fashion’s second annual 26 Days of Spreading Joy Campaign. From December 29-January 23, I’m asking all of our followers and supporters to engage in daily acts of kindness, no matter how small or big. You can learn more below about the history of this special time period and ways to participate below.

History of 26 Days of Spreading Joy

December 29-January 23 represents the 26-day time period our sweet Candice was in the hospital. As many of you know, she was born with a HLHS (Hypoplastic Left Heart Syndrome) a severe congenital heart condition in which the left side of her heart was underdeveloped. On December 29, 2015 Candice went in for her third open-heart surgery. Though we were hopeful this would be her last open-heart surgery for many years to come, the complications she suffered as a result of the surgery and other conditions she was born with proved too much for her little body to handle. We had to say goodbye on January 23, 2016.

Though those 26 days were the hardest of my life, they also opened my eyes to all of the love and joy that this world has to offer. We received so much support—and oftentimes from people we’d never even met—and all of it helped me to find joy in a terrible time.

Family, friends, the staff at Sunrise Children’s Hospital and strangers showed us endless love and support. My family took care of Candice’s big sister, which was a huge help while I was living in the hospital. Local heart moms started a meal train, and people all over the country were sending me lunch and dinner (sometimes enough to feed the nurses as well). Cards and care packages arrived at the hospital daily—some from people we never met. The Joyful Fighter Fashion support page was always full of messages of love. Doctors, nurses and hospital administration all went above and beyond their job to help me through this time.

The goal of Joyful Fighter Fashion’s 26 Days of Spreading Joy Campaign is simply to honor Candice’s life by performing one small act of kindness every single day from December 29-January 23—just as so many people did for me while Candice was in the hospital.

History of 26 Days of Spreading Joy

To participate, simply print the 26 Days of Spreading Joy cards below and, each time you perform an act of kindness, pass a card along to the recipient of that act so that he or she may continue the spreading joy train.

Post about your acts of kindness on Instagram, Twitter or Facebook using #26daysofspreadingjoy and #candiepienation. Be sure to also follow @CandiePieNation and tag us in your photos so that we can share your acts of kindness with the entire Candie Pie Nation community.

Ideas for Participation

Below are some examples of ways to Spread Joy, but feel free to come up with your own:

• Donate books to the children’s hospital or doctor’s office.
• Donate toys to the children’s hospital.
• Leave change taped to a vending machine at the hospital (with a 26 Days of Spreading Joy card taped up as well)
• Donate Blood
• Donate Plasma
• Sign up to be an organ donor. You can’t take them with you.
• Have your children draw pictures and give them to a local hospice or nursing home.
• Volunteer at the local Ronald McDonald House.
• Donate coloring books and crayons to the children’s hospital.
• Bake cookies for first responders.
• Make cards for families in the hospital and offer them words of encouragement.
• Donate soft tissues to the ICU. Hospital tissues are like sandpaper.
• Make dinner or order a pizza for a family who is going through a rough time.
• Let someone go ahead of you in line.
• Pay for coffee for the person behind you in line. (Be sure to hand the cashier a 26 Days of Spreading Joy card to give to this person)
• Pay for someone’s movie ticket, gas, food, etc.
• Give out hugs.
• Leave a popcorn treat at a movie rental box.
• Buy a sweet treat at a coffee shop and tell the cashier to give it to someone who looks like they are having a bad day.
• Just smile and say hello. You can brighten someone’s day.

FEBRUARY 01, 2017

Move Over Valentine's Day: Hello, CHD Awareness Week

When I see Valentine's Day decorations in stores or at schools or out-and-about, I don't think of the holiday we’ve all come to know. Instead, I think of Congenital Heart Defect (CHD) awareness.

Though many may not know this, CHD awareness week is February 7-14. It’s often forgotten—overshadowed with images of cupid and cards and candy—and it’s a week that deserves much more attention than it gets. Though, I can’t say I blame anyone for not knowing about CHD awareness week. It isn’t, after all, something I was ever aware of until I was blessed with my sweet Candice who, as many of you know, was a CHD baby. 

According to the March of Dimes, CHD is the number-one birth defect. In the United States alone, around 40,000 children are born with CHD each year. One-quarter of those babies will have critical CHD, which will require surgery or other extreme measures within the child’s first year of life. 

After reading these stats, then, it’s not hard to see why I struggle with Valentine’s Day. Do I think it should go away entirely? Of course not. But I also see it as a holiday that clouds a much more important awareness week. While companies profit from the countless greeting cards and chocolate boxes and teddy bears they sell, there’s a huge opportunity for charitable efforts that I would love to see more corporations tap into. 

Having grown up in Pennsylvania and having frequented Hershey Park as a child, I am on a mission to get Hershey’s to start selling Valentine’s candy that is somehow connected to CHD awareness week. I would love to see CHD awareness facts on some packaging, with a portion of profits going to CHD research. Think about all of the profits Hershey’s could generate and all of the awesome opportunities they’d have for really fun marketing tactics (selling chocolate kisses with #kissesforacause, for example)—not to mention the huge difference they could make by donating even just a small percentage of profits to CHD research.

I ask that you help me spread this idea by sharing this post, and posts of your own, using #kissesforacause. Together, let’s get to the heart of what Valentine’s Day is about—love and kindness.  

OCTOBER 02, 2016

Nothing to Hide

Why are we so scared of the word miscarriage? Why do we hide the fact that we are pregnant until that coveted safe space of 12 weeks in? I know I was excited every time I peed on that stick and saw two lines—telling only a few close friends and family, and making them swear to secrecy. In reality, though, I wanted to shout it to the world.

I have had five miscarriages, and, truth be told, many of my friends had no idea until they read my first blog. A loss of a child is hard. Even if that baby is only a ten-week-old fetus. Women need support when dealing with the loss, yet they hide their loss like it is something to be ashamed of. As if they did something wrong—as if they made a terrible mistake, guarding any evidence of it with their lives.

Let me just say: You did nothing wrong. This is not your fault. You are allowed to be sad.

I remember one time I woke up in the morning to go to work and had some cramps. I went to the bathroom and there was so much blood—it was all the evidence I needed to know exactly what was happening. This was my third miscarriage.

Instead of running to the hospital or calling my doctor, though, I went to work. I already knew what the doctor would say. They’d tell me I lost another child. They’d tell me to take a few days off of work and come back in a week to see if it all passed. After all except for one miscarriage I had to have a DNC. This is a small procedure to make sure all of the fetus is gone and to prevent any trace of an infection. A few days later, you are back to work.

No one talks about it. Most don’t even know.

When I would tell some women about my loss, I would hear their story. So many women have had miscarriages, but when it happens to you, you feel all alone—like this horrible burden is yours to carry…by yourself…with no support. Women hide their pregnancy so, if they have a miscarriage, they can hide their pain. Why are we so afraid to share our story? Why are we so hesitant to share that pain?

My mother had three miscarriages. So, after my second one my doctor did some tests on me and on my fetus after the DNC. They found out I had a blood clotting disorder called MTHFR. We also found out that every child I lost was a little boy.

With so many women having miscarriages, what can we do to help women not have to deal with so much pain and loss? Why is it, when you find out you are having a miscarriage, the doctors simply say they’re sorry but tend to offer no advice about why this happened? Then—the worst part—they tell you about how many women have miscarriages. As if this should comfort you. As if you should feel less alone now that you’re part of some international statistic. You don’t care about the numbers—they should make you feel less alone, but they don’t. You care about answers. You want what no doctor can give—a definitive answer as to why this happened and how you can keep it from ever happening again. You are chasing an elusive sense of comfort—one that simply doesn’t exist.

Like so many other women, after a miscarriage you feel depressed, angry and alone. With no answers, you try to figure out on your own what you could have done to make this happen. You tell yourself next time you’ll eat better, drink more water, work out more. Or, maybe working out is what caused it. Maybe next time you’ll work out less.

March of Dimes estimates 10-15% of pregnancies from women who know they are pregnant end in miscarriage. Statistics on miscarriage, though, are hard to come by, because many miscarriages happen before the woman knows she is pregnant. I know there are so many of us out there, and I know that—on some level—we’ll never find the answer we’re looking for. After all, even if our doctor were able to tell us exactly what happened, would that be enough? Would that ease the pain, offer you comfort, help you not hate yourself? No, no it would not. Answers—though we often think they’re what we want—aren’t what we need.

What we need is a community of women to confide in. What we need is support. What we need is to rally together. Answers don’t heal us. People heal us.

I wrote this for one reason—to help women who have suffered or are going to suffer miscarriages. We are strong. We are loud. We are a force to be reckoned with. Let’s bring awareness to this issue and create a community where women feel safe to share.

Let’s not be keepers of secrets, but, rather, towers of support.

AUGUST 29, 2016

Finding Support During a Difficult Time

Above is Candice with Sara, her daughter Hayden, and me. Candice has HLHS and Hayden has HRHS–together they have a full heart.

The Diagnosis

Let’s play a game: You just got a diagnosis from a doctor. The first thing you do is what…?

You Google it, of course. We all do. It’s human nature to want to know as much as we can about our circumstance, and, in this day and age, Google is where we turn to scratch that itch.

When I was 13 weeks pregnant with Candice, I found out that she had HLHS. Every time I saw the fetal cardiologist, I would receive more scary news. Because I was so in shock, I couldn’t concentrate on what they were telling me. I would essentially black out–sitting up, eyes open, breathing…just not hearing a word of what they were saying. Inevitably, I would get home and realize I needed to find out more information about what I’d just been told.

I would often turn to the internet to help me on my quest. The problem is, while there is a lot of great information on the internet, there is also a lot of not-so-great information on the internet. Research is essential to helping you cope with a diagnosis–so go ahead and do as much research as you’d like, but learn how to research strategically. And–even though it’s easier said than done–train yourself to take what you read on the internet with a grain of salt.

Be Open With Your Doctor

The best place to do your research is in-person, with your doctor. Don’t be afraid to ask your doctor multiple questions or to let them know when you missed (or simply didn’t understand) a critical piece of information they gave you. They’re seasoned pros–they understand that you’re going to be out of it, confused, shocked. They understand that you may need to call back a day later and get more information. This is all part of the process, and they’ve been through it countless times, so don’t beat yourself up for missing part (or all) of what they said during your initial diagnosis or follow-up appointments.

I had to learn this myself. I was afraid to tell the doctors that I missed what they said. So, instead I mentioned this to a nurse during one of my fetal monitoring checks. She called my cardiologist right away and told him. And, to my surprise, he wasn’t irritated or annoyed–he felt bad and even assumed that my missing the information he gave was an indicator that he wasn’t doing his job properly and wasn’t communicating clearly. He understood completely that my brain had–for lack of a better term–shut off. And he was more than happy to go over everything with me again.

So, don’t be afraid to ask your doctor to repeat something. Don’t be afraid to ask them to slow down so that you can write everything down. Don’t be afraid to request some time to process things. I always recommend asking your doctor to send you an email with key points and critical terms. Having something in writing is essential when you’re going through such a stressful and terrifying time. I also suggest asking if there are books, support groups or community resources they recommend.

Seek Out Support Groups

I looked to Facebook and found support groups for HLHS. Sisters by Heart, a non-profit organization that helps families who have a child with a single ventricle, was a huge help to me from the time I was pregnant with Candice–and they continue to be a huge support system for me to this day. It is. They helped me find people in my area to connect with, which was huge. 

Find a Mentor

Everyone needs a friend: what a simple but powerful idea. The best advice I can give to anyone going through a difficult diagnosis or stressful medical time is to simply find someone to support you.

Things to look for when finding a mentor:

• Someone Positive: I can’t stress this enough. Your mentor should exude positivity. You want someone who helps you find happiness in a terrible situation and strength in a scary moment.
• Someone Local: If you can find someone close to you, do. Find someone that can hold your hand at doctors’ appointments, someone who can let your dog out while you’re staying overnight at the hospital, someone who is near enough to help you out when you most need it.

Asking for recommendations is the best way, in my opinion, to find a mentor who’s a great fit. Ask your doctors, nurses or support groups for help. Sisters By Heart had a list of people in my area, and, remarkably, I was able to I find someone on their list who shared a mutual friend with me. Her name was Sara, and she was an absolute Godsend.

Sara has helped me through it all. When I met Sara and her family for the first time, I was about 16 weeks pregnant. I was scared to meet her daughter–I thought I was going to see an unhappy, sick baby, but I was wrong. Hayden was full of smiles and love. Sara showed me pictures of their journey and gave me some great advice. She was there with me the day I had Candice and continues to be by my side, always just a phone call away.

Create What You Need

If there is no support group in your area, start one yourself. Take charge–it’s so empowering in a time when we otherwise feel helpless. I had a hard time when looking for support groups–a lot of people were not in my area, so I would hear stories and get advice that I couldn’t really relate to. So, I started my own Facebook support page when Candice was born–and it was one of the best things I could have done.

The group is for anyone that goes to our local heart center, and I’ve met amazing people through it. When I would meet people in the doctor’s office or at the hospital, I would tell them to join and encourage them to invite others they know. I have also added some people who run our local Children’s Heart Foundation to help with posting about events and information. We are a wonderful support team for each other. I don’t know how I would have made it through this journey without them. And I want to take this moment to say thank you to all of those who have helped me on this journey.

MAY 13, 2016

Rainbow Baby

If you have a child after a miscarriage or loss of another child, that child is referred to as a rainbow baby

Before I had Candice, I had five miscarriages—one of them being a set of twins. At Candice’s first birthday, we chose to have a heart and rainbow theme to represent her heart condition and her being my rainbow baby.

When things go wrong, many people like to use the phrase, “When it rains, it pours.” This always made me think, but probably not in the way they intended it to. What I realized was that, when you have a child with special needs, your entire life can feel like a rainstorm. Sometimes, it’s just drizzling. Other days, it can be a complete inescapable hurricane. I have always loved the rain—maybe that’s why I was always able to find joy even through the hard times.

Then, on January 23, 2016, I lost my rainbow. This has been the hardest thing I have ever had to deal with. I cry every day for her. Grief can hit you like a storm. It doesn’t matter where you are or what you are doing. I can be sitting at work, having lunch and just breakdown. Or, I can be in a business meeting and just have tears rolling down my face.

I’ve decided to start a business in honor of my Candie Pie. I’ll be making hospital gowns for other children like the ones I made for her. I have a feeling Candice loves the idea, because so many doors have opened so effortlessly for me—and I know it’s her who is making things happens. Things are moving so fast all because she is watching over me. She has truly become my Rainbow Baby.