To the People Who Support Us on Our Journey as a Heart Family

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Dear friends and family,

From the day we found out about our daughter’s heart condition, you have been there supporting us, encouraging us, praying for us. You have cried with us, held your breath in hope with us and celebrated each successful step of the journey with us.

We were devastated and scared at the start, not knowing how we would find the strength to face the journey ahead. You made it clear that no matter how dark and difficult the journey might be, we would not have to face it alone. So many emails and messages of support received, messages that were read over and over again. You may not have known what words to say, but you will never know how much strength we drew from the few you did. The words may have been clumsy, or broken, but there was so much love and encouragement in them.

We may not have spoken to or seen each other for several years but when we needed you, you were there. Sharing words of sympathy and comfort, stories of hope and prayers for a miracle. You shared our story with your friends, with your churches. There were people all over the world praying for us, praying for a miracle to happen. To know that we were loved and prayed for by people who have never met us gave us strength and hope.

Thank you all for all those small acts of kindness along the journey. The friends living near the hospital who offered their spare room so that we had a place to stay. The friends who let us use their house while they were away at Christmas so that we could leave the hospital for a short time and enjoy a Christmas dinner provided by family in a more home-like environment. The friend who offered some expressed breast milk when I was struggling to produce enough for my daughter’s needs. The many food parcels that meant we took time to eat something other than a sandwich from the hospital canteen. The cards we received, the little moments captured on camera, the baby clothes lovingly given and so many other thoughtful little gestures that helped tell us how much you cared. 

There are many things that I have been thankful for since the start of our journey as a heart family, and the love of our friends and family is one of the biggest things. From the very start, you have been there supporting us, encouraging us, praying for us. You have cried with us, held your breath in hope with us and celebrated each successful step of the journey with us. Thank you all for helping to make our journey as a heart family a little easier. We are truly blessed to have you as our friends.

Follow this journey on Little Hearts, Big Love.

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Why I Choose Not to Be Offended by Jarring Comments About My Son

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Bennet’s first months were so incredibly painful. I know you “heart moms” and other mothers with empty arms understand. But realistically, there aren’t a huge amount of people who can completely understand, right? For many, that specific kind of pain isn’t something that can be fully grasped because they haven’t been given that uniquely painful journey.

And the truth is, it doesn’t ever disappear. It just becomes a part of us. A beautiful, messy, tragic part of our story as mothers. It’s something I personally wouldn’t change for anything, but I still get a huge lump in my throat when I think about it. When I think about my life before hypoplastic left heart syndrome (HLHS), I’m thankful for my growth. I’m thankful for what I believe God has done in my life as a mother. But it’s still really painful.

Around the time when Bennet was 6 months old, the tide began to turn for us. We were slowly acclimating to our new life. We were actually feeling joyful again. We began to stand in the sun and feel human again. And Bennet started smiling, really smiling for the first time in his pain-filled life.

And then it started. The jarring comments from the people who just couldn’t understand.

“Oh, I’m so happy he is all better now.” Well, he still has half a heart so …

“He is going to do big things when he is an adult.” We aren’t ready to talk about that. It’s a difficult subject. We are focused on enjoying today.

“But isn’t he fixed?” No, he will never be fixed and will require major interventions for the rest of his life.

“Now that he’s better, you must be relieved.” OK, sure.

“I have a friend whose son had heart surgery, and he’s 100 percent A-OK now.” You do realize there are different heart conditions, right? And Bennet’s condition is really, really bad.

It’s not that anyone was trying to be insensitive, it’s just that Bennet’s limitations, his pain and the reality of his situation weren’t in their faces like it was when he was lying in a hospital bed with his chest open. We were smiling again! Bennet was smiling! I believe God had turned our morning into dancing. And people were happy for us. They didn’t understand. But did I really expect them to?

So around that time I made a decision. I chose not to be offended. This doesn’t mean that I won’t help educate someone when he says something that’s just incorrect or uneducated. And this doesn’t mean there won’t be someone out there who is actually just being cruel (though I haven’t experienced this yet.) But those people don’t get to offend me, either. It’s not worth it, and, if I’m being honest, I pray I have grown way beyond the point of being offended by these things.

Instead, I’ll ask myself what the likely motive was in their statement.

Was it to encourage me?

Was it to connect with me?

Were they trying to relate to me?

Was it an honest question that sprouts from a lack of education?

I’ll try to see my boy through their eyes — not my jaded, traumatized eyes — and begin to see why they might not understand.

And I’ll show grace to others in the same way I want grace to be shown to me.

People are human. They are imperfect. They can be totally weird sometimes. I can be totally weird sometimes! So I choose patience.

arms throw a baby boy into the air

A version of this post originally appeared on A Beautiful Window.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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To the Stressed Dad Worried About His Child's Health

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I’ve been where you are — the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt. You’re the dad on day four in the hospital after your child’s most recent heart surgery. I see you standing in the cafeteria, meal ticket in hand thinking, If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.

Dude, I’ve been you. This post is for you, whether you’re shuffling through the hospital or doing it at home. I know this life is a challenging one, but we have to remember to take care of ourselves. Obviously our little heart warriors get a lot of attention; they need that attention. There’s meds to be given, tube feeds to administer, appointments to attend and futures to fret over. The reality, though, is that we might be killing ourselves with stress.

There’s been a shift in healthcare toward more non-traditional, holistic styles of healing – or integrative therapies, as they’re sometimes called. Honestly, they weren’t anything I thought about until the last year or so. My job has exposed me to several of these therapies, and I think they’re a great thing for the healthcare system and for us as heart parents. So here’s a few I suggest for you dads:

Try healing touch.

According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health.”

I’ve tried healing touch twice and whether or not the results were all in my head, it worked splendidly. We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise.” I sat in a chair and the practitioner put her hands gently on my head, neck and shoulders, encouraging me to breathe and listen to some soothing sounds on a radio. After 10 minutes, I felt completely relaxed, focused and rested.

Some hospital employees take classes to become healing touch practitioners, so ask around to see if someone can offer you a 10-minute session.

Try aromatherapy.

It’s amazing how you can just put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and try to get your heal on. For example: Is stress making you feel nauseated? Try a few drops of ginger essential oil, which might help settle the digestive system and stimulates appetite. One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event. I sat at my desk with some ginger essential oil and felt better in no time. There are so many great uses for aromatherapy, and I encourage you to research them more on your own. Look into soothing fragrances like bergamot, lavender and vanilla.

Practice deep breathing exercises.

I’ll never forget one psychology professor’s advice about breathing exercises to reduce stress.  She said, “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.” I’ll never forget it because it works. Taking a few moments to focus on your breathing can really help relax you and relieve some stress.

An exercise that I found works great is to breathe in slowly through your nose, counting to four.  Then hold it for two or three seconds and release slowly through your mouth for another count of four. If you close your eyes and do this a couple times, you’ll be amazed by how relaxed you can feel. Plus, you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one).

Rock it out.

There’s music that makes you happy, and there’s music that calms. I encourage you to let music set you free. If you’re going for a hospital stay, take some music with you. If you can’t do that, step away for a few minutes, lock yourself in your car and listen to some music. It’ll be a nice re-set for your mind.

Find a fun hobby.

Work, work, appointments, work, appointments, clean up barf, work, laundry, dishes, cooking, work, appointments, clean poop, work. We can run ourselves into the ground doing important things like this without making time for ourselves. It’s not selfish to have a hobby. It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle, etc. A hobby is a better relaxing activity than watching Netflix (though that can be fun, too) because it stimulates you creatively.

For the last few months, I’ve been roasting my own coffee beans at home using a popcorn popper. I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I grind up some super-fresh coffee. The process makes me happy, and when I drink a fresh cup and it tastes good, I feel accomplished.

But wait, there’s more.

Find out what might help you relieve stress and relax. Look into things like mindfulness and guided imagery.  Maybe acupuncture is for you. I know the life of a heart parent, heck any parent, is a stressful one. I’m not saying you shouldn’t be concerned about things. But for right now, you are your child’s best advocate and companion along this journey. The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse. Don’t let your heart warrior go at it alone. Give yourself the best shot at success by taking time out for you.

chris perez heart family

A version of this post originally appeared on Half Heart. Whole Life.

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 “Share Your Story” page for more about our submission guidelines.

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4 Ways My Son's Medical Condition Has Made Me a Better Man

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My life changed forever the day I found out Nolan, one of my twin sons, would be born with half a heart. In his first two years of life — after two open-heart surgeries, a feeding tube and many hospital stays — I’ve realized that “dad life” is more than sports and horseplay… it can be so much better. So how did having a son with hypoplastic left heart syndrome make me a better man?

1. I learned what compassion was really about.

I used to think I was a pretty compassionate dude before Nolan was born, but seeing him with his chest open and tubes everywhere really changed how I viewed the world. Before Nolan, I was completely unaware of congenital heart defects (CHDs) and how devastating they can be on a family. I paid no attention to things like the annual Heart Walk or giving to the Children’s Miracle Network. I just thought that by doing a few kind things now and then, I would have this nice-guy thing on lock. Boy was I wrong! 

CHDs can break you down, and as you build yourself up again, you realize there are other people struggling, and your heart truly goes out to them. You want to help, you want to lend a hand, you want to share your experiences so they don’t feel alone. That’s why I started my blog: to reach out to fellow Heart Dads and let them know, yes, this is hard and I’m with you… and you’re never “too manly” to hurt.

2. I began to take better care of myself. 

Come on, guys, you know the drill: you’re fine, and you don’t need to see a doctor unless a limb falls off… and even then, you have duct tape. I was notorious for not going to the doctor for anything; I’d just suck it up and get through it. Now that I’m caring for a child with a serious medical condition, I think it would be pretty lousy of me to exit my Heart Warrior’s life early because my own ticker gives out. This means losing some weight, paying attention to what I eat and even going to the doctor for my first physical in who-knows-how-long. I know what you’re thinking: green smoothies aren’t “manly.” You know what’s manly? Living. Try it.

One thing that’s just as important as taking care of your body is taking care of your mind. Please realize that parents in our position can and do suffer from symptoms of PTSD. When those feelings come, talk them out. Don’t pack them in; it isn’t healthy. I also take some time almost daily to have a centering moment. For me that’s a cup of coffee and zoning out on the couch once all the kids go to bed. No worries, no busy thoughts… just my coffee and some deep breaths. From there, I can tackle the world. Again, try it.

3. I know I can’t do it alone. 

I always get asked the same question: how do you do it? I picture heart parents like giant redwood trees: tall and strong. What I’ve learned recently is that redwoods actually have shallow root systems. Instead of reaching down, the roots reach out and wrap around the roots of other redwoods, and that’s how they survive and withstand decades of weather and wind. Mind. Blown.  

My wife and I make a really great team. I work hard and so does she. There are lots of late nights and lack of sleep involved in the lives we live. There are lots of appointments and therapies, too, but without each other, we’ll never make it and neither will Nolan. But our root system has to extend outward, too: family, friends and other heart families. They keep us supported and we support them. I know it’s the tough-guy thing to put the world on your shoulders, but you just can’t go it alone. Reach out for the roots of others.

4. I know I’m training for this marathon as I run it.

Nolan is 2 years old and he’s doing great… but this definitely isn’t a sprint; it’s a long run. Most of the time, though, I have no clue what I’m even doing. I’m far from the perfect dad, but I’m trying my best. I’m no clinician, but I’m trying to learn. I’m not well-known, but I still write regularly on my blog and even went to Washington DC to lobby for more CHD research. There’s something new daily, if I sit down and really think about it. And there’s more to come. I don’t know how I’m going to explain to Nolan that his next surgery will be painful. I do wish he could run as fast as his twin brother, but he’ll get there. I do want a long and strong life for him… and we’ll do that together.

So as we celebrate Father’s Day this month, I want the dads out there who are going through a similar situation to know that while it isn’t the “dad life” you planned, it’s still a dad life full of wonders and joy, and it’s a journey that will make you a better man every step of the way.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Mom Who Found Out Her Unborn Baby Only Has Half a Heart

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If I could go back to the day my daughter, Gracie, was diagnosed with hypoplastic left heart syndrome (HLHS), I would tell myself, “It’s OK to be scared. It’s OK to cry. It’s OK to be mad. It’s not fair. It’s not what you wanted. But you’re about to embark on the greatest journey of your life. You don’t see it now, but you will learn so many things.”

photo 2 (2) Undying love and dedication. You will sit for hours upon hours just staring at a 6-pound baby covered in wires and tubes and an open chest cavity with a beating little heart underneath. You’ll be unable to hold her or even really touch her. But there’s nowhere else you would rather be. You don’t know that some day down the road, that little girl who you can’t touch or hold will come running up to you, throw her arms around your neck and squeeze you tight. She will give kisses and hold your hand. She will rub your cheek when you’re sad.

Patience. You will wait for two weeks to hold your baby, and it will be like a minefield trying to maneuver around the wires and tubes. You’ll have to be careful not to pull off monitors and to avoid her incisions. It will take ten minutes with two people helping you to get her settled in your arms, and it will be worth every single one of them. Your butt and legs will fall asleep, but you’ll ignore it because you don’t want to put her back in the bed. After a few weeks you’ll be moving her and picking her up on your own, giving sponge baths and changing diapers. You’ll get to take her outside for the first time on the way to the car to go home when she’s 5 weeks old. You’ll work on breastfeeding over and over while people tell you it might never happen. It does. For 13 months. She grows. You’ll watch her learn to crawl and walk and run. She’ll tumble and fall and come running to you to kiss her knee. You’ll tickle her and she’ll laugh. She’ll cry and you’ll be able to soothe her.

Strength. The kind you never knew you had. You will learn ins and outs of the medications and what works for your daughter and what doesn’t. You will be her strength and her advocate. You will know how to stand up for her. You will show her what it means to fight and be tough. You will sleep with beeping machines on a crappy bed for weeks on end, going days without showers and hours and hours without eating. You will sleep holding her in your arms at home with one eye open, feeling her breathing. You will administer meds and monitor o2 levels every day and stay on top of weekly appointments. You will take her back for more surgeries, handing her off to the nurse to have her chest cut open over and over. And every time you will hold it together for her, because she needs you. She will say, “Mama” and want to share your food. She will go on walks with you and turn around to look at you and give you a huge smile. She will be happy. So happy. She loves her blanket and loves to listen to you read to her. She goes to appointments and lets the nurses take her vitals and listen to her heart. All with a smile. She is strong. You showed her how to be.

As you’re sitting on that table hearing that your unborn daughter will only ever have a half of a heart, that she might not grow up, that it’s OK to terminate. Remember this: just because she has half of a heart, it doesn’t mean she won’t live a whole life. You see that baby kicking and moving up there on that screen? Fight for her. And don’t stop.

The Mighty is asking its readers this question: 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.

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NFL Player Ensures 4-Year-Old With Heart Condition Will Have a Very Merry Christmas

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At a time when professional athletes are often getting media coverage for the wrong reasons, one NFL player has demonstrated his heart of gold.

The Oakland Raiders recently made 4-year-old Ava Urrea an honorary captain for the day, according to the YouTube video below. Ava lives with a serious heart condition that’s required her to have over 14 procedures. So, as part of the Touchdown Dreams program, the Raiders showered her in gifts and invited her to spend the day with them.

Offensive tackle Menelik Watson was so moved by little Ava’s struggle that he decided to give her family his entire weekly paycheck. The sum most likely amounts to around $18,000, according to Bleacher Report.

Watch the full story of this sweet gesture in the video below: 

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