Why Being a Heart Mom Doesn’t Make Me Superhuman

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Being a heart mommy can mean being perceived sometimes as a bit of a super mommy. I’m often told, “You’re so brave,” “You’re so strong” and “I don’t know how you cope with it all.” And while it’s true that I try to be brave and try to be strong, there have also been many times when I feel anything but brave or strong, and I’m not entirely sure how I cope with it all either.

I’m a heart mommy, but I’m not superhuman.

I don’t have a magical strength that I was endowed with the day I first heard the words, “There’s something wrong with the baby’s heart.” If you’d seen me shortly after handing my child to a surgeon for heart surgery, you wouldn’t think I was especially brave either.

Louise George and her daughter
Louise and her daughter.

Being in intensive care with a child recovering from heart surgery is like being on a rollercoaster. There were moments when I didn’t want to ride it, but I had no choice but to carry on, hold on tight and hope we would get to the end safely.

Being a heart mommy is exhausting, overwhelming and wonderful. The mixture of emotions sometimes feels so intense. Sometimes the emotions and thoughts whirl around in my head and it all feels too much. There have been times when I have felt almost unable to speak out of sheer exhaustion. There have been times when all I can do is focus on the next minute and take the next tiny step forward.

The reminder that this moment will pass isn’t always comforting. I know the challenging times won’t last forever and will one day be just a memory. But I’m terrified of the thought that one day maybe all of this will be a memory and nothing more. And so I cling to the present and learn to live in the moment.

The truth is I cope with the surgeries, the rollercoaster ride of intensive care, the exhaustion, the challenging moments and the day-to-day fear of the future because I have no choice. Without further heart surgery, my child won’t be able to survive into adulthood.

Sometimes I cry and sometimes I get upset and want to rebel against this hand that we have been dealt. I would give anything for my child’s heart to be perfectly formed. And then I take a deep breath and remember just how thankful I am to have her and how incredibly lucky we have been so far.

Sometimes I wonder where I will find the strength to take the next step, but somehow I always do.

Sometimes I’m thankful for what this journey has taught me, for the strength that I have found and for the faith that has been an anchor throughout the storms. I have been amazed at how joy can sometimes be found even in the difficult moments. I have learned to appreciate the little things and be thankful for them. Living in the moment is hard at times and a blessing at others.

I know how lucky I am to have my children and how different things could have been.

I’m a heart mommy, but I’m just an ordinary mom, too.

I can get upset with my children, and there are times when bedtime can’t come quickly enough. Being a heart mommy doesn’t make me a perfect parent by any stretch of the imagination.

And when I feel overwhelmed by the demands that parenthood can bring, there’s also that underlying prickle of guilt and shame. I berate myself for my lack of gratitude. I know how lucky I am, and yet sometimes my actions don’t show it. But parenthood can be hard at times, and I’m only human.

At night I look at my sleeping children and am thankful for another day with them. I might not live up to my own ideal of parenthood, but my children at least know they’re loved and that’s what really matters. And I go downstairs and take a deep breath, feeling thankful for a moment of peace and quiet.

Who knows what tomorrow will bring, but for now I’m thankful for today. Another day with all the imperfections that family life brings. Another day of ordinary heart family life.

I’m a heart mommy, but I’m not superhuman.

I’m not amazingly brave or exceptionally strong. Nor do I have an extraordinary faith. I’m just an ordinary mommy, doing the best I can for my family and getting through each day as it comes.

Follow this journey on Little Hearts, Big Love.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

 

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To the Loved Ones Trying to Help Us Care for Our Son With Congenital Heart Disease

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The one thing I know for sure is that it really is the thought that counts. I may lose my temper, get frustrated with you, or I may just suddenly tune you out altogether. But at some point I will mentally return to the moment you tried to help, and I will be thankful and humbled by the fact that you are spending your time and energy trying your best to help us out.

The difficult part of caring for a parent of a child with a critical congenital heart disease (CCHD) is that the parent may not know what they need, or they may need one thing one minute, and the complete opposite the next. I may be grateful to enter into a conversation about comic books, then suddenly become immensely frustrated at having to put forth the energy to maintain a conversation and demand quiet. With this in mind, we’ve been putting together a list of the things that have worked to bring us comfort and the things that have caused us some consternation. We think of this list not as hard and fast rules, but as things that have been reasonably consistent during the last few weeks. As we learn to care for our son in the cardiac intensive care unit, we are also learning what we need from our friends, family and strangers who have overwhelmed us with their kindness.

1. Provide help rather than offer help.

Especially in the first few days, but also as the weeks wear on, it has been difficult for us to think about what we need. Vaguely we know we needed things like food, rest, to manage our personal lives away from the hospital (work, rent, bills, etc.) and distractions, but we are often so focused on the here and now that it becomes difficult to manage these otherwise mundane tasks. The greatest help, both physically and emotionally, has been when people have been able to intuit our needs and help us provide for them. When my wife Lyndsay’s parents (who had been taking care of our apartment and getting our mail) returned to Michigan, my stepmom jumped right in and said she would drive to our house to get the mail and pick up any items we find we may need. My sister practically made us move in to her spare bedroom so we could be close to the hospital. Friends have been coming to visit and will bring snacks for us, without us asking, and others who live too far away to visit have sent us care packages with snacks and welcome distractions. These gestures of support have been amazing, and they have made our lives here way less complicated.

This is not to say that we don’t appreciate people asking what they could do to help, it’s just that we’re often not in the mindset to give a good answer.

2. Be OK if we don’t want or use what you provide.

All that said, sometimes people intuit wrong (which is usually because we may want something one minute and don’t want it the next), and bring us something that we can’t use or don’t really want at the moment. Please be OK with us turning you down. This hasn’t happened a whole lot, but on occasion we will get something that we don’t want. A friend brought me a magazine one day. I looked at it briefly and said, “I don’t want it, but thanks.” My friend was awesome and just said, “That’s cool.” Maybe she returned it, maybe she kept it for herself, I don’t know. But I appreciated the ability to say no to help when it wasn’t something that would actually help. If you’re worried about spending money on something we may or may not use, consider getting something that’s easy to return, or something you’d be happy to have for yourself. Then you can give yourself a gift for being so thoughtful!

parents holding newborn baby in the hospital
Ariel and his wife holding their son.

3. Visit, without asking.

Following the theme where we make as few decisions as possible, if you know that we’re going to be at the hospital, just plan on visiting and don’t worry about asking us if it’s OK for you to visit. For the most part, it’s always OK. You can text us to say that you’re planning on stopping by at a specific time, but you don’t really need to ask us which day will work better for us. Most of the days we’re just at the hospital, so that’s a decision we’re happy for you to make.

4. Be OK with a brief visit.

While we love having visitors, because our moods shift and because we want to spend time with our baby when he’s awake and moving around, our visits with you may be shorter than you and we would like. So even if the visit lasts only five minutes, we are so thankful to get to spend the time with you, and even more thankful when you understand how our attention span might prevent us from spending more than those five minutes.

5. Let us tell our story.

We’re learning a lot: about our son, his CCHD and our family. Telling personal narratives allows us to structure and give meaning to our lives. When you give us the time and space to explain our son’s condition, to talk about what it was like to find out about it, to express the feelings and sensations we travel through each day, you help us understand who we are and what we’re going through. The more time and space we have to tell these stories, the better we will understand who we are as a family. There are few gifts more powerful than a good listener during a tough time.

6. Talk about the weather.

OK, not really the weather, but something we find interesting and that we’ll find distracting. The toughest day we had was the day of our son’s surgery. We were both a wreck. The most unobtrusive statements caused me to lash out at someone or burst into tears. At one point, when it had been a while since we’d heard from the surgery team (they called us every hour or so to let us know their progress), my friend Joe asked what classes I had taught in the fall. I told him and he started asking me questions about them: what book did I use, what was my approach to teaching it, what was my favorite part about teaching it? For about 25 minutes, I left the stressful world of the surgery waiting room, and entered a world of two colleagues sharing teaching strategies. It was one of the most important moments of the surgery for me because it deleted some of the painful time of waiting and replaced it with the joy-filled time of an intellectually stimulating conversation.

7. Be OK with silence.

It can be hard to pick up on body language cues, but sometimes we just need to be left alone, and picking up on those cues helps us have the comfort of friends without the obligations that typically go along with them (e.g. conversation, reciprocation). That doesn’t mean that we want you to leave, but it may mean that we just want to be in a space where it’s OK for nothing to happen and for no one to have anything to say.

8. Help us provide care for our child in our way.

Our son’s CCHD is complicated, and as with any major medical condition, there are significant risks. As parents, these risks can feel crippling. On paper, a 90 percent success rate sounds awesome. As a parent, though, it means that one out of 10 kids who go through this operation won’t make it. And those odds are not good enough for any parent.

Friends and family know this, and they try to help. Getting information about how care is administered, what progress is being made in the field, how we can access more research on our son’s condition, and who treats cases like this and how, are integral pieces of information that will help us determine our son’s future. Just make sure that you give us the time and space to digest this information. We’ll be helping our son deal with his CCHD for the rest of his life, so his care will be a process that we figure out over time. While we appreciate all the bits of information we receive, ultimately we have to weigh them all together, so no single bit of information will ever stand on its own. Combined, we will figure out how all the information will help us provide a fulfilling day to day life for our child, and a productive and effective system of care for him and for our family.

9. Offer empathy if you can, or sympathy if you can’t.

This is simple, but important. Over the last couple of weeks, I have not been the stable person I usually am. It’s like I’m just waiting to get angry at someone. It’s not rational, and what I’m often looking for is just someone to recognize that I am emotionally distraught. The other day I received an email from a friend offering empathy. He told me about a similar, but different situation he had when his son was born. Emails and conversations like this remind me that I’m not alone, that others have made it through this and a lot more, and that I will, too. But often people don’t have an experience that is similar. In these instances, your lack of understanding of my feelings and emotions is one of the most helpful things I can hear. Just as empathy reminds me that I can get through this, sympathy confirms that my struggle is reasonable, and to be expected.

10. Don’t apologize for not visiting.

There is no bad reason for not visiting. I’ve heard people say they felt bad for not coming sooner, or at all. My thoughts on this are that if you love us and you want to support us, you will do so in whatever way makes the most sense to you. I’ve had friends tell me to text them the name of a restaurant that will deliver food to me so they can order me dinner. I’ve had friends send SmileGrams to our son’s room to let us know that they’re thinking of him and us. And we’ve had many people donate whatever works for them through our fundraising site. These donations will help us get through the many expenses that will arise as we continue to learn to take care of our son. All of these forms of care remind us that we have a support network that wants us to succeed and is going to do what they can to help make it possible.

Follow this journey on Baby Raphael.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Submit a Story page for more about our submission guidelines.

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To My Friend Whose Child Is Starting a Tough Medical Journey

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I wrote several months ago about my dear friend who found out her daughter would be born with a congenital heart defect. Going through (at the time) a frightening prenatal diagnosis of our own and then a subsequent open-heart surgery, I can relate to some of what my friend is feeling now and about to go through.

If you are struggling to find the right words to say to a parent whose child is facing surgery or who is about to start a tough medical journey with their child, I hope you see something in this letter that your loved one will take comfort in.

Dear Friend,

I want you to know my heart hurts with yours.

I want you to know I’m not here to say it will be OK, because there is nothing OK about seeing your sweet baby endure this kind of trial. But I pray you find some peace in the middle of these unthinkable circumstances.

I’m not going to say God gives children with special medical needs to special parents, because I don’t believe that’s true. But I can’t imagine a more special couple than you and your husband to raise your sweet girl.

I’m not going to tell you any phrase that starts with, “At least it’s not…” Or “It could be worse,” because these chapters in her story, your story, are painful. Period. I feel the path to healing can only begin when we recognize there is something to be healed.

I’m not going to say, “Let me know how I can help.” Instead I will just do whatever it is I know you need help with. I’m not going to say, “God only gives you what you can handle.” Instead, I believe God is the only way we are able to cope through the inconceivable events life sometimes brings.

I’m not going to tell you, “I know how you feel.” Even though you may sit in the same cardiac intensive care unit as I did, your family’s journey and your feelings are uniquely yours.

woman holding newborn baby
Jillian and her son.

Here is what I will tell you. What your daughter and your family are about to go through is not fair. At times it may be tear-stained and gut-wrenching.

But even in this unimaginable journey you are about to begin, there can be good, too.

Your daughter may just teach you more in her first year of life than you’ve learned in your first 30. Through this, I believe you can become more compassionate and understanding.

If you let it, your worldview can become bigger. You may worry less and embrace life with more vigor. Through this, she can become stronger, and so can you.

When you walk out of those hospital doors, when the smell of the ICU has finally left your clothes, this chapter, although closed, never actually ends.

The challenges you all are about to go through can infiltrate every page of your story.

Because if you let it, I believe the pain you feel now can one day make the colors around you seem brighter, it can make work seem less daunting and can undoubtedly expand the immense amount of love that is already in your hearts.

Follow this journey on News Anchor to Homemaker.

The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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 Submit a Story page for more about our submission guidelines.

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6 Things You May Not Know About Moms of Kids With Congenital Heart Defects

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My journey as a “Heart Mom” began in 2010 when our daughter was born with a serious congenital heart defect (CHD). Within hours, she was transferred to a cardiac intensive care unit in a children’s hospital in another state. She spent her first 66 days of life in the hospital, and by the time we got to bring her home, she already had one open-heart surgery under her belt. By 8 months old, she underwent her second open-heart surgery, and by 20 months we were told it was time for a third. Luckily, we found a doctor who was able to do a procedure that would buy us time before another surgery was needed. Today, at 5 years old, she is still doing great, although we know surgery is in her future.

In 2015, I gave birth to our son. All prenatal scans showed a healthy heart, and we were thrilled. However, at 2 months old, we found out that he, too, was born with two congenital heart defects. Although not as serious and emergent as our daughter’s, they are CHDs nonetheless. My journey continues.

The journey of a Heart Mom is filled with ups and downs. Unless you have been there, you probably don’t know what it’s like. In honor of American Heart Month, which concluded recently, I thought I would take some time to try to explain what this is like from my experience. Below are the top things I feel you should know about being a Heart Mom.

1.  There are a lot of us. 

CHDs are the most common birth defects. Approximately one in 100 children is born with some form of CHD. That’s a lot. That means that most likely someone in your group of Facebook friends is affected by a CHD. Possibly more than one. They could be a parent, grandparent, sibling, friend or even have a heart defect themselves. I have learned that in my relatively small group of 164 Facebook friends, there are two other Heart Moms. I did not know how common this was until it affected my family.

2.  I get angry sometimes.

Although I’m not proud of it, I get mad sometimes when I think about the congenital heart defects that affect my children. As cliche as it sounds, I have thought “Why me?” It was really bad shortly after my daughter was born. It wasn’t fair. We are good people. Why was this happening? I felt cheated. I could not hold my daughter at all until she was 5 days old because of the ventilator, tubes and wires. I could not nurse because she needed to be tube-fed to save her energy. I couldn’t have the experience I was “supposed” to have. As time has gone on, these feelings have been much less frequent, but I must admit they still flare up at times.

3. We have an unspoken, unbreakable bond with other Heart Moms. 

I am very thankful I know some Heart Moms in my already-existing circle of friends. It helped so much when I discovered I wasn’t alone. There are so many unique and complicated feelings that go along with having a child with a heart defect. Although I am truly and forever grateful for the support of my other friends, there is no one who can “get you” like another Heart Mom. They understand how you feel without you having to explain the intricacies of your emotions. They know the fears you are too scared to verbalize. They just get it. When I can’t express my feelings with words, I am grateful to know I have people who understand anyway.

4. The journey is never over. 

My children’s congenital heart defects are lifelong. There is no “cure.” Even if your child doesn’t need any more procedures, there will always be cardiologist appointments that will inevitably dredge up some old memories and new fears. As I said earlier, my daughter had a procedure done in 2012 that delayed the need for her next open-heart surgery. Now in 2016, she is still doing well and has surpassed the doctors’ estimate of when surgery would be needed. We were told 18 to 24 months, and we are now at 37 months and counting. Because of this, there is always a running clock in my head knowing there is more to come. With my son, we are in wait-and-see mode until his follow-up appointment in six months. At this point, we don’t know if he will need medical intervention or not. The waiting can be the hardest part.

5. Our children are our heroes. 

Our children are amazing. My daughter has gone through more in her short life than many adults ever do, and she is still the happiest kid you can imagine. She barely cried as a baby despite everything. She wakes up each day smiling like it’s Christmas morning. Our children are resilient and they are fighters. If anyone is an inspiration, it is our “Heart Heroes.”

6. We wouldn’t change a thing. 

Of course we would do anything to take away any pain or struggles our children experience, but they are in our lives for a reason. My children have changed me and made me a better person. They have taught me so much about courage and strength and love. They have truly made my life and my heart complete. I think they are perfect, and I wouldn’t change them for the world.

To all the other Heart Moms and parents of children with any serious medical condition: You are not alone. No matter your specific situation, there are people who are where you are and who understand. There are people who truly do know how you feel. Don’t be afraid to reach out for support when you need it. This is not an easy journey, and having someone who truly “gets you” can make all the difference.

mom looking at baby in hospital
Mia and her child.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Submit a Story page for more about our submission guidelines.

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When I Worry for the Future of My Daughter With a Heart Defect

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I pick up the stethoscope and listen to your heart. You shuffle a bit in your blankets because I have disturbed your sleep, and I freeze not wanting to wake you. When you’re settled back down, I get back to my mission. I adjust the instrument against your chest and listen. I’ll never get over how different your heart sounds from my own. Two open-heart surgeries have changed your anatomy in such a way that your heart now has its own unique way of beating. Steady as she goes, I set the device down and prepare to join you in sleep.

little girl smiling
Erin’s daughter, Ellie.

I think back to all the challenges you have faced. 2014 was a blur of hospitalizations — 16 that year, some for a few days, others for months, some back to back, some within hours of being discharged. 2015 was a blur of procedures: cardiac catheterizations and finally your second open-heart surgery. I remember thinking so clearly there was no end in sight. I remember all the close calls — the moments when things were dire, when your life seemed to be slipping away. I remember the anguished cries of a father right next door who lost his son. I closed my eyes and held your hand to my mouth, kissing it over and over as the tears poured, praying for that family and praying I would never know their pain. All that brought us to this: the stability I had fantasized about when we first found out we were going to be parents. Life right now is so perfect, which has me absolutely terrified. I thought we would never be able to crawl out of the darkness, and now here we are sitting in the sun. It makes me think about how resilient the soul is.

No matter how many times the human spirit is brought to the brink of destruction, it manages to heal and recover. The worst nightmares can fade away into the background noise of life — still there, still present, just muted against all the other sounds. This is what I perceive to be the double-edged sword of humanity: being buried deep in the torment of a moment so dark you can’t see your way past it — but miraculously, incredulously, you somehow find your way out to a place of peace. The other side of the sword is that you let that peace surround you and wrap you up, because for so long you were cold and scared and this beautiful security blanket belongs snug around your soul to salve the pain and despair from the moment before. How could this be a bad thing? I don’t necessarily know that it is. I fear that it is. I fear that within my blanket of security I will forget. I won’t remember how to fight hard. I won’t remember how to be strong in the face of uncertainty. I won’t remember how to be stoic. I worry I won’t be able to hold up my guard with the same force and persistence I did before, now that I have started to let it down.

I tell myself it’s like riding a bike. Sure, your butt is going to be sore for a few days after a long hiatus, but you will ride and ride, and eventually you will break yourself into it again. I am banking on this to be true. Because right about now, after five months of sunny days, I begin to wonder when winter will come. I have seen too much to not know that nothing gold can stay, and yet, I pray every night my world will continue to glitter forever. These days are beautiful, beautiful in a way I could never have fully appreciated before all the darkness. Beautiful in a way that would be devastating to lose.

The question now becomes how long do I permit myself to wonder about the potentially cold days ahead? How many times is it OK for that dark thought to weave into our happy, quiet moments? How do I stop them from invading the peacefulness we have worked and fought so hard to achieve? How do I forge a balance between remembering them, because they are responsible for shaping our lives into these perfect moments, and not allowing them to resonate and echo into every crack and corner, spreading their darkness? The answer is I don’t know. Like so many things in this world, I don’t have a full understanding of how to do it right. In the end, I will make mistakes, but I will learn from them. I will hope that next time it will be better, because I have faith there will be a next time. I will work hard to strike a balance and cherish these days with the reverence they deserve. I will give myself some credit for the battles and challenges already won and know that these lessons will continue to be useful as we parade on.

I watch you smile in your sleep and wipe away a rouge tear before it falls. It’s been a while since I have had to fight and be brave for you, my girl. I hope it will be a while longer, but if it’s not, history shows me I am capable of so much more than I ever thought. We all are. You showed me that. And sure, once we get back on the bike, our butts may be a bit sore, but we will keep pushing, keep pedaling, keep going — because beyond this dark moment we can’t see past, there is hope. And that, like you, has always been worth fighting for.

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Erin’s daughter and cat.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? 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 Submit a Story page for more about our submission guidelines.

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Photo Series Captures the Pains and Triumphs of Kids With Heart Conditions

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Photographer SheRae Hunter specializes in portraits of babies, but for her latest photo series, she put the focus on children with congenital heart defects (CHD). Hunter met the children and their parents two years ago at a fundraising event in Winchester, Virginia. She later connected with them on Facebook, and after following their daily lives on social media, she wanted to make a difference for the families.

Her mission is to help increase awareness for CHD, and with her powerful images, give a voice to the families who might not be able to speak out. “I can try to see these children how their parents see them — fragile and scarred, but brave and mighty. Broken, but perfect,” Hunter wrote on her website. “I can listen and not judge, not offer advice, or extend pity, but just listen.”

Girl with congenital heart defect
Maggie, age 2, has three congenital heart defects and loves animals, especially dogs.
Girl with congenital heart defect
“You can never prepare yourself… you feel so helpless as a parent, because there is nothing you can do to change it. But then your child shows you how strong and brave they are…” – Maggie’s mother

Children with CHD have abnormally structured hearts and/or enlarged vessels, and the condition ranges from moderate to life-threatening, according to the Children’s Heart Foundation. Most of the children in Hunter’s photos have had multiple open-heart surgeries, and their chest scars are proudly on display.

Jodi Lemacks, National Program Director for Mended Little Hearts, praised Hunter for her work. “It is so important for kids to see other kids like themselves too,” Lemacks told The Mighty. “They often feel different and like no one understands. Seeing others makes CHD feel more ‘normal.’ We often feel like their lives are filled with so many challenges, medical challenges and everyday issues, and to see them having fun makes us feel hopeful — like we can let go of the CHD for a while and just be everyday people.”

Boy with CHD
Colton, age 4, who is “always smiling.”
Boy with congenital heart defect
“[We are] taking the good, no matter how tiny, and the bad, no matter how big, as it comes. Have hope that [he] will overcome this…hope for a miracle.” -Colton’s mother
Girl with Congenital Heart Defect
Emilee, age 3, has had nine open heart surgeries.

Girl with Congenital Heart Defect
“After her last open heart [surgery] I looked at her big, beautiful lips and her cute toes, and I realized they were pink! After 2 1/2 years, my daughter was finally pink! I’d never seen her with pink [skin] and at the moment I fell onto her bed crying tears of joy. I knew she was going to have a longer, happier life than the 3-5 years they gave us…” -Emilee’s mother
 Hunter said the highlight of the project was simply working with the the children, and the harder part came when she opened the notebook filled with the interview responses for the parents. “Every single handwritten interview moved me to tears,” she told The Mighty. “I couldn’t even read through them all at once.”

Boy with Congenital Heart Defect
Anthony, age 3, loves Mickey Mouse and has had four open heart surgeries.
Boy with Congenital Heart Defect
““The best advice ever given to us? ‘You will have your own normal, don’t worry about what other families do. You will establish your own normal…its okay to be a little different.'” -Anthony’s mother

“Most CHD kids do not look sick, but their scars are very real,” a spokesperson for the Children’s Heart Foundation told The Mighty.  “CHDs are the most common birth defect with 40,000 babies born each year. Despite these numbers, CHDs are not well known. Because of this, spreading CHD awareness and funding research are so very important.”

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Madeline, age 5, loves to sing and dance.
Girl with congenital heart defect
“How important God is as our foundation! And we are blessed beyond measure by having Madeline in our life.” -Madeline’s mom

Hunter encourages others to share the images, and to use the #zipperstrong hashtag on social media to keep the conversation going. “This project is my humble and sincere attempt not only to understand the world of these families and children, but to give you a glimpse into their world, that you might seek to understand as well,” she added on her website.

Boy with congenital heart defect
Caleb, age 6, is a ” fun-loving goofball always ready for a good adventure.”
Boy with congenital heart defect
“Our whole world changed, what we once thought of as certainty was long gone. We learned to appreciate every breath and moment…we value each other more…” -Caleb’s mother
Girl with congenital heart defect
Kaylen, age 2, had her first open heart surgery at just 4 days old.
Girl with congenital heart defect
“Handing our daughter off to medical staff…knowing they were going to stop her heart for the procedure..it’s the hardest thing we’ve ever had to do.” -Kaylen’s mom
Baby with congenital heart defect
Isaac, 4 months old, has already had his first open heart surgery.
Baby with congenital heart defect
“When he cries, sometimes I smile because he was on a ventilator for so long, and he couldn’t cry. It’s weird, I know, but I smile.” -Isaac’s mom

All images courtesy of SheRae Hunter / SL Hunter Photography

For more information on CHD, visit Mended Little Hearts on Facebook, and check out their Rock Your Scar campaign, which is currently hosting a photo contest to raise awareness for CHD.

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