Oh! The Places You'll Go!

We never thought much about the future during Rowan’s first year. It was always “take one day at a time” mentality. So, when it was time for Rowan’s first birthday, we were ecstatic. Here was a kid who, at birth, had a 50% chance of survival on top of having open heart surgery on top of plummeting into respiratory failure - we wanted his first birthday to represent where he had been and where he was going. Our theme was “Oh the Places You’ll Go!” And it has been a fitting theme ever since.

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Happy 1st Birthday!

Just like any new mom, those are the words I imagined writing on my son Kellen’s first birthday cake one day. As you may know, I will never have that opportunity as Kellen passed away just shy of turning six months old due to congenital heart disease. You may not be aware, but 1 in 100 babies are born every year with congenital heart disease. This means that your neighbors, friends, or even family members may have experienced these heartbreaking “firsts.”

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2018 Season of Giving

Many of us have created a family tradition around participating in Black Friday, Small Business Saturday, Cyber Monday, and Giving Tuesday. This year, we ask that you become a part of the Big Heart family and join us in helping to bring a smile to a patient this Holiday.

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Shop Like a Hero: Amazon Smile

Do you shop with Amazon more times than you care to admit? Does your FedEx guy know you by name? Well, great news! You can now shop like a hero and make a difference by purchasing the same items you use in your home every single day (and we promise not to tell)! The Big Heart Fund has partnered with AmazonSmile to allow 5% of your everyday purchases to directly benefit the Big Heart Fund.

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Heart Hero: Angelus Hollingsworth

Last week, we had the joy of watching Angelus venture outside for the very first time! Like those that care for him every single day, he has captured the hearts of all of us here at the Big Heart Fund and we consider ourselves lucky to have been able to support Angelus and his #supermom Keisha along their journey. Check out the amazing photos of Angelus's great outside adventure last week and to support heart heroes like Angelus and his mom, give today.

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#SuperTuesday Volunteer Highlight: Jennie Dickerson

"I serve the Big Heart Fund as Board Secretary because I believe that the work of the Big Heart Fund is valuable to families receiving care at the Heart Institute. Health is about so much more than doctors and medications, and the Big Heart Fund aims to be a support system, a stress reliever, and a friend. We can all relate to needing a little help during a hard time."

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#SuperTuesday Volunteer Highlight: Mackenzie Neal

I met Katrina through church and learned of the Big Heart Fund. I got to volunteer and immediately, I was impacted through the work of the Fund. My heart was changed through this experience and I hope that you consider donating your time or gifts to an organization that truly has a "Big Heart" for these kids and their families. The kids of the Heart Institute at Le Bonheur are the real heroes and the Big Heart Fund helps them everyday.

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BIG news from the Big Heart Fund!

Over the last year, we have raised over $8,500 that have allowed us to serve over 350 meals to CVICU families, deliver over 50 toys and development items, and provide seven personalized superhero capes to heart transplant recipients. The last twelve months have been rewarding, but as we have continued to grow, so have our opportunities to provide expanded services to all of the heart families at Le Bonheur. To develop the organizational structure needed to expand, Kellen’s Big Heart Fund became an independent non-profit in November 2017. Now simply named the Big Heart Fund, our vision is to develop a spirit of community among families battling pediatric congenital heart defects through social, physical, and financial support.

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December 2017 Newsletter

The Big Heart Fund has served over 350 meals, raised over $8,000, provided seven superhero capes to heart transplant recipients, and delivered over 50 toys and developmental items in just ONE year! As we continue to grow, we are excited about our new opportunities and look forward to continuing to provide support to the patients and families of the Heart Institute at Le Bonheur Children's Hospital.

Read our December 2017 newsletter to learn more about our future plans and ways to get involved in 2018!

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#BeAHero 2017 Update!

In addition to purchasing items from the wishlist, we want to be able to continue to serve dinners to the patients and families, provide support to the CVICU staff, and establish a fund to help support the parents of children recovering from open heart surgery. Together, we will make a BIG impact on the tiny heroes of the Heart Institute at Le Bonheur Children's Hospital. If you haven't had the chance to give, please consider donating a gift of $25, $50, or $100 to support the Big Heart Fund.

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#SuperMonday Volunteer Highlight: Krissie Scmidt!

#SuperMonday Volunteer: Krissie Schmidt. Krissie has been an integral part of our volunteer team at Kellen's Big Heart Fund. She has helped organize and serve dinner to patients and families, performed arts and crafts with siblings of patients, and has dedicated her time to help the Big Heart Fund grow. Click to read more about why she supports the Big Heart Fund!

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Catch a Sale, Give a Smile

As we head into the Holidays, many of us will be gathering with our family and friends for Thanksgiving and Christmas as we do every year. Unfortunately, not everyone will get to be home for Holidays, including the patients and families of the CVICU at Le Bonheur. Join us to help make the Holidays a little bit easier.

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Kellen's One Year Angelversary

After being born a week late and on April Fools Day, I knew that Kellen was a kid that would march to the beat of his own drum and I loved him for it. I will never forget during our time in the NICU when the doctors, in a push to help him gain weight, decided to fortify my breast milk with extra calories and Kellen suddenly stopped eating. For days, we tried to get him to take his new bottle and he refused. The doctors believed his heart conditions must have been getting worse causing him to become too fatigued to eat because there was “no way” a two-week-old baby could tell there was a tasteless fortifier in his breastmilk. But they didn’t know Kellen like I knew Kellen. I knew him better than anyone I have known and believe I will ever know in my lifetime. We were that connected, as mother and son. See, I knew that nothing was wrong with Kellen, he just simply didn’t like them messing with his food and I didn’t blame him. Maybe a normal two-week-old baby couldn’t tell the difference between fortified and unfortified breastmilk, but Kellen could and after a taste of plain breastmilk, he ate like the champ he was. That is the baby boy I remember, stubborn and strong, the baby I loved.

My love for him was bigger than anything I had ever experienced and as time went on, three months into what would be our final hospital admission, I knew that I would make that dreaded trip home alone with an empty car seat. I knew days before he left this earth that it was time to say goodbye. The air was harder to breathe, the room felt empty, and the light -his light- was gone. He was already on his way, taking a piece of me with him, and I felt it deep in my soul. It wasn’t that we had given up, I loved him too much to not help him put up a fight. “There is nothing like a mother’s love”, they say. It is powerful, unyielding and in a helpless situation, that was the only thing I could offer my baby boy, love. Over time, I lost count of how many times they told us to prepare to say goodbye and he would just pull through like the superhero he was. Day in and day out, surgery after surgery I sat by his side advocating for him in every way that I could because of love. Our journey taught me that there are no limits to what we as parents will do for our children out of love.

We endure fertility treatments, morning sickness, and labor because of love. We sacrifice our time, money, and precious sleep because of love. We love them unconditionally beyond our and their wildest dreams, praying we never have to see them suffer because we love them. For those of us that have cared for critically ill children, a parents’ love becomes endless hope in the darkness and relentless faith in the wilderness. I loved my baby boy, my Kellen. I would have moved Heaven and Earth to ensure his safety and comfort. I would have given him my own heart if it would have saved his life. Despite this dedicated and selfless love, when your child dies it seems society expects you to move on as if that love magically disappears with the loss of your child. Their lives have resumed, so why haven't yours? The day he was born, I became a mom and my only job was to love my son unconditionally and now he is gone. Neither time, money, relationships, or even more children will ever fill the void that now exists. There are no diapers to change, no boo-boos to kiss, and no bedtime baths to give. In exchange for the earthly experiences of motherhood, I grieve.

In the beginning, I was ashamed and frustrated with my grief because I felt I was supposed to be “moving on” and I hadn’t yet. I wanted to be healed and “move beyond” my grief, as if his death was something that I could push away to never revisit again. On my grief journey, I have learned that the love of a parent for a child does not end because of death, it transforms. It adapts to the absence of physical connection and manifests itself in grief. I now realize that I was grieving because I loved. In fact, to grieve is to love or as a friend so beautifully stated, grief is love. Experienced individually and uniquely, grief is beautiful, heartbreaking, and unconditional. Just like I loved my child when he was here, I grieve for my child in his death. I cry happy and sad tears at the memory of his smile. I lash out in anger at God when I witness a mother happily playing with her carefree child. I talk about Kellen and say his name with pride when I share his story. I dream about what kind of toddler he would have been, the type of letters that would get sent home from his daycare. I long for his scent and the feel of his tiny fingers closing around mine. I imagine his voice and what cartoons he would like. I visit his grave and talk to him on my car rides home from work. In every way, I miss him beyond words and like the physical love I had for him here on earth, I will always grieve for him because grief is love, too.