This Is What It Means to Be a Heart Parent

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It took just seven words to change my entire life. 

Seven words that broke my heart, shattered my dreams and turned my world upside down. 

Seven words from which I emerged a stronger and more compassionate person.

“There’s something wrong with the baby’s heart.”

In that moment, I felt fear colder and stronger than any I’d ever known before. In that moment, I knew I would do anything I could to save my child’s life. In that moment, although I could barely grasp it, I became a heart parent.

I learned to hold on to hope and faith when there was nothing else left to do. I learned to live in the moment and find joy in the darkest of times. I learned to put my trust in the skilled hands of those who were caring for my child.

There were many moments when all I wanted to do was run and hide, to pretend this wasn’t happening. There were many moments when the fear of the future felt overwhelming. There were many moments when it seemed the only thing that kept me going was hope and the love, support and prayers of those around me.

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This is what it means to be a heart parent.

I’ve looked at the huge hands of a surgeon and marveled that they can perform such intricate surgery on something the size of a walnut.

I’ve sung my child to sleep in the anaesthetic room of an operating theater.

I’ve handed my child to a surgeon, knowing that they will stop my child’s heart and prayed I will see my child alive again.

I’ve spent hours pacing the corridors of a hospital while my child undergoes life-saving surgery. I’ve spent hours sitting in intensive care listening to the endless beep of machines. I’ve spent hours holding my child in my arms, thrilling at the joy of being able to do so.

I’ve learned that miracles can and do happen.

There are many moments where my feelings as a parent seem to be amplified: Anxiety whenever my child is unwell. Guilt on those challenging parenting days that come to us all – those moments when bedtime feels like it can’t come soon enough and I feel guilty for not enjoying the moments I know I’m so blessed to experience. Joy and pride in all the little milestones that suddenly become extra special because of the journey it has taken to achieve them.

The road has been rocky at times, and there might be many dark moments still ahead. I do not know what the future holds, and I do not dare to try and look ahead.

This is a road I would have never willingly chosen to walk, and yet I know I would walk it all over again for the joy and blessing of having my child with me.

I’ve discovered a faith that has helped me to endure throughout the dark moments. I’ve discovered a strength I never knew I possessed. I’ve discovered a love stronger than anything this journey can throw at us.

This is my life.

This is our journey as a family.

This is what it means to be a heart parent.

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Follow this journey at Little Hearts Big Love.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Taylor Swift Gave Advice We All Need to Hear to a Fan With a Heart Defect

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Taylor Swift’s been known to treat her fans as friends — the pop star regularly responds to followers across all her social media platforms. Recently, a young woman named Emily wrote Swift on Tumblr, thanking her for helping her see her heart condition in a new light.

Her post read:

this is something that i’ve never shared with you… or anybody for the most part. i want to let you know that i was born with a congenital heart defect, and as a result i’ve had holes and leaks in two of the valves in my heart. i’ve had surgery twice and because of this my heart is mainly ((hence the word “mainly”)) hole free! however, ever since i actually could comprehend that there was something wrong with me, i never truly understood why i deserved to have a severe and life threatening condition anyway

in light of all my confusion, i’ve found someone whose made all of these blurry lines become clear and i want to thank you for that.. taylor, you’ve made each and every long hospital visit, echo, ekg, iv, etc., easier, and i am so so incredibly grateful for that. you allowed me to be accepting towards the condition that i have and i’m so unbelievably thankful for that…

Swift didn’t let the note go unnoticed. And in her Tumblr response, she included a sentiment we love dearly:

I think it’s amazing that you’re so honest about how it’s affected you. It’s impossible to be positive all the time about something that completely terrifies and confuses you, and I’m glad you’re not putting that kind of weird pressure on yourself.

We’re glad role models like Swift exist.

You can read the entire exchange here.

h/t E! News

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My Son Can't Be Anything He Wants When He Grows Up – and That's OK

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walter As parents, we want the world at our children’s fingertips. We tell our bright-eyed daughter she can be the prima ballerina, and exuberant son he’s the next Michael Jordan. Filled with imagination, gumption and creativity, childhood is a time to dream big — a time when we want to encourage our kids in every aspect of their lives and earnestly believe that with enough hard work, our kids can truly be anything.

My son can’t be “anything he wants to be when he grows up.”

Not just because he has a congenital heart defect requiring multiple open heart surgeries in his lifetime — but because he is human. And that is OK.

Some of the limitations that will be placed on this 6-month-old boy of ours came up in conversation with his cardiologist this month. Some limitations may prove necessary, though others are placed by organizations out of misunderstood risks and liability fears. Most sleep away camps and certain scouting activities may be closed to him. Many traditional schools would make him sit out at P.E. and even exclude him from their sports teams. He’s already an active little boy, from an active sports-loving family. We knew a career as a police officer, fireman or Marine (like his daddy) would be out of the question due to stringent medical requirements.

When I look into those eager baby blues and crawl on the floor with this energetic and determined child of ours, it breaks my heart. A lot. As in, I cried on my way home from the doctor’s office. A lot. I don’t want to tell my little boy “no” so soon. I want the world at his fingertips too. It took me a few days to embrace it, but as I thought and talked it out, I realized Walter will simply face a reality of life much earlier than it took many of us to find. It remains a reality many of us choose to forget — or ignore — but reality none the less.

The world may not be my son’s oyster. He, however, can sure be its diamond. Because for every “no,” “can’t,” and “shouldn’t” our son is told, we will teach him to find a “can,” “will,” and “way.” Like all of us, Walt has limitations — some of his are just more apparent than most and less severe than some.

For all of us and our children, where we may not be the best, we can always be better, and though we may not set a world record, we can set a personal one. So though I don’t look forward to the days when Walt will be told he “can’t,” I do look forward to the moments when he proves those hurdles were just leading him to the finish line.

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This post originally appeared on Daughter of Time.

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I’m in a Club of Amazing, Strong Women. We’re Called the Heart Mamas.

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Dear newly diagnosed moms,

I know you. Well, I don’t know you know you, but I know you.

I’ve been you. You’re sitting there, scared to death, trying to put all of this new information into your brain. You’re trying to process how this is all going to work, how your new baby, currently growing away contentedly in your belly is going to come out and need to start fighting immediately. How he or she will have open-heart surgery at a few days old. Is that even possible? Most of all, you’re wondering how your baby will get through, how other siblings at home will fare, whether your marriage will survive… and how you will make it through.

I know you feel alone. We all did. But you’re not.

Somewhere along your journey, you’ll realize you’re not alone.

Maybe you’ll be waiting to meet your surgeon for the first time, and a mama in the waiting room will see your swollen belly and will approach you. She’ll tell you that the bright, thriving and busy boy running around the waiting room has the exact same heart defect as your unborn baby.

Maybe you’ll be watching your baby boy recover from his first open-heart surgery and you’ll see another newly postpartum mama being wheeled in to the bed next to you to see her brand new baby girl, also awaiting open-heart surgery. You’ll say “hi” and the tentative new bonds of friendship will begin.

Maybe it’ll be years later and you’ll be at the cardiologist’s office with your thriving little toddler and you’ll see a mom with a boy about the same age. You’ll strike up a conversation and find out not only does her son have a heart defect, but they live 5 minutes from you.

You’ll think all of these meetings are chance, just coincidences. But they’re not.

Someday, you’ll realize that these encounters, all of them, were there for you to meet your fellow heart mom, to be ushered into this amazing community of women.

Heart Moms. We love each other. A love borne out of shared adversity, of triumph.

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We’re a crazy, usually way overly stressed out bunch. And we’re all different—but we have this in common. We have BIG hearts. And we’re scared most of the time. But we love each other and support one another unconditionally.

We visit one another in the hospital, to give hope and love—and sometimes just a cup of coffee or a smuggled-in bottle of wine. Or a confetti gun for a stir-crazy toddler.We text each other all the time. Sometimes little pictures of blue fingers and toes—are they too blue? Should I call the cardiologist?

And sometimes they’re so, so so much deeper. Our fears, our worries, the things that keep us up at night that must be shared. And sometimes they’re triumphs. The first word, the first step, the preschool graduation announcement. We meet up. We drink wine. Sometimes lots of it. And that’s OK. We laugh. Big, giant belly laughs. And we cry. Deep, heart-wrenching tears of fear and of loss. Sometimes in the same night. And that’s OK, too.

We’re all a part of this sisterhood of heart mamas. And we’re stronger, and braver, and better for our part in this sisterhood.

And you, newly diagnosed mama, are a part of us, too. You may not know it yet. But you are.

Because this is how we do it. Together.

This post originally appeared on Hope for Baby Bennet.

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What My Son Won't Remember About His Time in the Hospital

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My husband and I have a 2-year-old healthy son named EJ and a 4-month-old named Christopher. Christopher was born with multiple congenital heart defects and had been in the hospital at Children’s Medical Center of Dallas since his birth on November 17, 2014.

He has had seven surgeries, which include two open-heart surgeries and at the latest a tracheostomy. He will be ventilator-dependent at home with us for the next couple of years. I wrote this for him…

You won’t remember, but I will.

How I thought it was a bad dream when the doctor told me something would be wrong with your heart.

How your daddy and I cried ourselves to sleep in each other’s arms that night.

How I looked at your brother and felt so much guilt because we were having you for him, and now he was going to feel neglected for years to come.

You won’t remember, but I will.

How I spent the next three months terrified. How I knew you were safe inside of me but as soon as you were born, you would feel pain and anxiety while being so little.

How when my water broke a month early, our world started spinning and I knew nothing would ever be the same again.

You won’t remember, but I will.

You were so perfect and pink when you came out. A team was there to fly you away to the best doctor at the best hospital. My heart ached that I couldn’t hold you, never breastfed you, never got to cuddle you.

I spent the night in the hospital alone that night. Your daddy had to take care of EJ and work so he could take me to see you the next day. My breasts and uterus ached for a child that I didn’t have with me. The girl came in to take newborn pictures of you, but you weren’t there. You won’t remember, but I will.

How the first time I held you my heart was so full. The nurse told me you would need a palliative surgery. Everyone thought you had a broken heart, but your heart surgeon fixed it and gave you a full heart. I remember how those who told me you were broken wouldn’t look me in the eye after that, they knew they shouldn’t have said that.

You always were and always will be perfect to us. You never have been “sick” to us. You have things that aren’t right, but you have never been wrong in our eyes.

You won’t remember all of this. But I will.

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You Think You're Stronger Than Me, But You Won't Win

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Dear Complex Congenital Heart Defect,

You snuck up on me.

When I was born, the doctors thought I was fine… until my first week check-up. I know you think you are stronger than me and that you can knock me down. For the first seven years of my life, you did a good job trying to make the child version of me stay scared. You made it hard for me to make friends because you kept me in the hospital for so long and you made it impossible to be a kid.

You did a good job of making my mother think I wouldn’t make it and you made her nervous when anything went wrong. I still believe she feels that way to this day.

But I have something to say to you.

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You didn’t win and although there are things in my life I cannot do, you have not taken away my dreams. At the age of 27, I want you to know that I am still full of the life you tried to take away.

And although I am reminded of you every day, you don’t bring me down, you don’t make me pity myself, and you most certainly don’t  make me feel weak.

I also want you to know that I didn’t turn out the way you wanted. I’m not sickly, I’m not frail, and I’m not broken. My strength and perseverance through all the things you put me through have made me healthier than anyone had ever thought possible.

Sincerely,

Mandi

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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