Living Dangerously: Cringe-worthy moments in the life and times of a heart mom

Margaret King is a talented writer who volunteers to cover a variety of topics for the Pediatric Congenital Heart Association. We are so thankful for her, as we are of all our volunteers. Lend your own talent to make a difference, volunteer with us today!

Being a heart parent requires leaps of faith every day. All parents walk the balance between protecting their children and allowing them to experience the outer world. Some days pass relatively smoothly, whereas others require a great deal of restraint. On those tougher days, I often find myself inwardly cringing, while outwardly keeping a smile on my face because my son is having such a great time being a “normal kid.” Here are unadulterated snapshots of some of my most mortifying heart mom moments in all their cringe-worthy humor — and thank you to my family for agreeing to let me share them!

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Did a little spit, dirt, and hair ever hurt anyone?

All children go through a phase of picking things up off the ground and putting them in their mouths. As heart parents, the importance of keeping our children as healthy as possible is drilled into us. A simple virus can set our heart kids back weeks, if not more, and other contagious illnesses can have serious health consequences for our children. Yet, we also know that our children need to explore their world, and build up their immune system like any other child. And so, I resolved not to freak out when Kieran put his mouth on the handlebar of a shopping cart, or chewed on the edge of a grocery store counter during checkout. But the biggest cringe-worthy moment I experienced in this department was when my son picked up someone’s discarded, half-eaten lollipop from the sidewalk, decided it was a serendipitous find, and before I could react, stuck it in his own mouth. Luckily, his own horror matched mine when he found the texture gritty, and pulling it out of his mouth to inspect it, found it was covered in dirt and strands of hair. “We could bring it home and wash it off,” he suggested hopefully, before I convinced him to chuck it as far away from human civilization as possible.

Clean Freak/Obsessive Mom

Do a lot of heart parents appear obsessive much to their social circle? No, not us (cue the sarcastic font)! When Kieran started kindergarten, I grilled his teacher about the availability of hand sanitizer, hand wipes, and disinfecting wipes in the classroom.

“Do you need me to come in and wipe down tables and toys?” I inquired hopefully. I was told that really wasn’t necessary, as the school custodian took care of cleaning the classroom, but that they would be more than happy to let me provide hand and disinfecting wipes.

I ran to the local big box store within ten minutes and filled my cart with industrial-sized tubs of cleaning wipes, and dropped them off that day with a note to let me know when they needed more. They must have lasted a long time, because I never got a request for more. Then again…maybe I scared them a bit with my apparent germophobia?

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85-year old kindergartner

My son has a cyanotic heart defect, which means his blood is deprived of full amounts of oxygen. One result of cyanosis is getting cold easily, and for most of the year (especially in spring, when others are perhaps overeager to cast off heavier clothes), my son dresses as if it’s 10-20 degrees colder than it really is. In March and April, he will be bundled up and beg to wear long underwear, a winter coat, and woolen hat when other kids his age are trying to get away with shorts or sandals. On a couple occasions, other moms have even peered at us and pointed out, as I’m wrapping layer after layer onto my son, “it’s really not that cold out.” Yes, well, tell that to my son while he’s screeching over a waft of fresh air from a cracked-open window–and tell that to my dear 85-year old Grandmother, while you’re at it!

Anti-Social Events

Social events have often required some degree of internal negotiation and planning for us. Whether its considering the weather (how hot it is outside, the risk of contagious illness during cold and flu season), parking issues (how far our son would have to walk for an event – festivals and professional sporting events are especially problematic), social concerns (how understanding friends and family are of my child’s limitations), or a myriad of other factors that run like a litany through our minds, sometimes I worry we come off as anti-social.

When my son was on Coumadin, we had the added concern of keeping our extremely active but uncoordinated toddler from major falls and head bumps. I recall the summer of his Fontan operation, the third of the 3-stage open-heart surgeries for his heart defect, when we were still supposed to keep him from doing heavy physical activities. His sternum was still healing, and the Coumadin left him prone to serious bruising. We were invited to a nearby church picnic, and as this church had been very supportive during our hospital stay, we wanted to go to say thank you to as many people as we possibly could. We also thought it would be a nice, family-friendly, safe atmosphere for Kieran to have some summer fun.

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When we got there, however, I knew we were in for big trouble. There was a large bounce house at the picnic, swarming with kids who were at least three times Kieran’s size. The larger kids were monopolizing the bounce house, and I watched with sinking dread as first one, then another small child emerged sobbing from the bounce house. Kieran saw the bounce house, and was overjoyed. The poor kid, cooped up in a hospital bed and then at home for much of the summer, must have thought he had hit the jackpot!

“Oh, no,” I said. “No way. NO. WAY!”

Cue total meltdown at the church family picnic, and the resultant heads turning with their eyes upon me and my husband, who were trying to calm and reason with our post-surgical young son.

We let him go in for “two minutes,” but unsurprisingly, he wouldn’t come out after a couple minutes of rough, wild body-slamming. I watched as he bellyflopped for the second time on his newly-stitched sternum, and imagined what cardiology might be saying to me right now. I watched further as 12 year-old kids shot through the air like ballistic missiles, narrowly missing my son.

“Get him!!! Go in there!!!” I hissed at my husband, who bravely entered the fray and dragged our son out.

Cue second meltdown.

In the end, we left after 20 minutes with a screaming child, hanging our heads as if we were the meanest parents in the world.

Epic Fail

However, the cringe-worthy moment that stands out the most involves our pre-op instructions before the Fontan, our son’s third open-heart surgery. Kieran’s Fontan was scheduled for a Monday, which meant that our pre-op day was the Friday beforehand. After a long day of appointments, meetings, and blood draws, our son was given “blood bands,” which were hospital ID bracelets that prepared him for surgical intake and patient identification. We were given strict instructions not to lose the blood bands or let them come off at any time during the weekend. Of all the instructions we were given that day, other than the NPO guidelines (ie, no food by mouth), the blood band instructions were the most important. “If you lose them, we’ll have to reschedule the surgery and do the lab work all over again,” we were told. No one wanted that, especially Kieran, who can name about 1,000 things he’d rather do than get blood draws.

However, we quickly learned that it wasn’t so easy to keep loose-fitting, plastic ID bracelets on a 3-year old boy. Not only did they keep slipping off, but the fact that it was finally summer in WI, and the fact that we weren’t certain how much of the summer our son would be able to enjoy, made us give in to his request to play with his water table at his grandparents’ house over the weekend. Surely there could be no harm in that, right?

My well-meaning parents sprayed sunscreen on my son, and he happily went over to the water table and splashed around. It wasn’t until later that we realized the combination of spray-on sunscreen and water had made all the writing on the blood band bracelets slide right off. Instead of identification bands, our son now had two completely white plastic bracelets that barely stayed on his arms.

We crossed our fingers and hoped for the best. On Monday morning, we sheepishly reported to surgery, hoping no one would notice, but right before the first oral sedative was administered, the nurse peered at the blood bands in consternation. We knew the gig was up, and confessed everything.

“Oh, no,” she muttered. “Oh, dear.”

One of the blood bands was completely illegible, and the other had only the faintest outlines of the print that once was. As she squinted, we waited nervously, afraid that after all this, the surgery would have to be rescheduled and the painful, traumatic blood draws redone. Finally, the nurse said she was able to make out some of the original print on the bracelet, and Kieran had his Fontan surgery as planned.

And this still remains … my biggest cringe-worthy heart parent moment yet.


Margaret King bioMargaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.

When a Cause Finds You

The Pediatric Congenital Heart Association is pleased to welcome Jonathan Corwin as our newest blogger.  In just a few short months, Jonathan has dove in and participated in many PCHA activities from advocacy, to fundraising, and now blogging.  Welcome, Jonathan, we are so grateful you found us! If you would like to be an advocate, like Jonathan, sign up to join our CHD advocacy network, today!

There are times when you find a cause and then, there are times when a cause finds you.

My son, Lukas, was welcomed into this world in June of 2011 looking as healthy as his brothers before him, even though we knew something deadly was lurking. Having already been diagnosed with Truncus Arteriosus, it was a moment that forever changed our family and brought about experiences I never could have imagined. Lukas is why I advocate on behalf of Congenital Heart Disease (CHD). After watching my own personal heroes in scrubs and lab coats fight to save his life, how can I not? Many CHD survivors cannot advocate for themselves. How can I not?

I chose to attend the 2016 Congenital Heart Legislative Conference in Washington, D.C. earlier this year with Lukas, and it was an extraordinary experience. I was inspired among so many survivors and their loved ones, a collection of people, many of them strangers to each other, all sharing a common bond and mission. The determination to fight for this worthy cause energized the room. The conference was an opportunity to share our stories and command action with Members of Congress elected to represent us. And that is exactly what we did. There were stories filled with joy and those filled with heartache, stories of second chances and those we have lost. Sharing Lukas’ story in the fight for CHD advocacy has been one of the most incredible and rewarding experiences of my life.

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After Lukas was born, I watched helplessly over the next two weeks as he went further down the path of heart failure, while his doctors gave the rest of his tiny body as much time as possible to grow stronger. He was immobilized and intubated. As if this was not already terrifying enough, he stopped breathing due to a nerve response triggered by the breathing tube. Alone in the room with him the first time this occurred, I panicked as his color drained, alarms began to sound, and medical personnel rushed in from every direction. They began their work and openly pleaded with him to take a breath. I can honestly say I have never been so terrified in all my life. This scene was repeated a half dozen times over the next few days leading up to his first open heart operation. He came through this ordeal with flying colors and we were soon able to join him in recovery. My little boy was less than a month old and already he was the strongest person I had ever met. He underwent a second repair in 2015 and continues to be a shining example of perseverance.

For the first time ever, Lukas met someone with the same heart defect at the conference. It was a very personal moment. My son beamed while showing this young lady his scar, and she asked if she could FaceTime with him and keep in touch. I was so touched. I was forced to hold back tears. At 17, she is wise beyond her years. It is people like those we met at the conference and on this journey who will bring about change in outcomes and patient care.

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Sharing stories likes Lukas’ not only brought us closer at the conference, but were a window for Members of Congress into the importance of fighting for this cause. 160 attendees participated in meetings with our legislators as we implored them to cosponsor the Congenital Heart Futures Reauthorization Act of 2015 and make appropriations requests relevant to CHD for the Centers for Disease Control and the National Institutes for Health. We made a lot of progress and laid the groundwork for even greater successes in the future.

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I did not find this cause, this cause found me. Now, I feel the responsibility on behalf of my children, and those other CHD survivors who need a voice, to use every tool at my disposal in this effort. Too often we have potential champions for this cause who have never been asked or given the opportunity to lend their voice. I am here to ask you to lend yours. Will you join the fight for CHD advocacy and help introduce others to this life changing journey? Congenital heart disease is the most prevalent birth defect leading to infant mortality in America. That simply is not acceptable. Not by any measure. Together, we will build a coalition of legislative champions who strive to give healthcare professionals and researchers every tool they need to save lives and improve patient care.


Blogger_Corwin_JonathanJonathan Corwin lives just outside Indianapolis, IN with his 3 sons – including Lukas, who was born with Truncus Arteriosus in 2011. In addition to his advocacy on behalf of congenital heart disease, Jonathan was previously an aide to United States Senator Richard G. Lugar. In his spare time, he enjoys taking daytrips with his children, Indianapolis Colts football and Indiana Pacers basketball.

Shoes Worthy of a Heart Hero

The Pediatric Congenital Heart Association celebrates creative efforts to raise awareness and educate the public about congenital heart disease.  This post was written by Jacob’s mom to recognize his incredible achievement!  

In September 2014, Jacob Burris was unexpectedly diagnosed with a CHD known as a coarctation of the aorta.  His disconnected aorta was repaired surgically last year at the Oregon Health & Science University, OHSU Doernbecher Children’s Hospital in Portland, Oregon. The medical care he received was amazing.  Since then Jacob has become a heart health advocate for checking blood pressure since detecting his high blood pressure is how his CHD was discovered at the age of 12.  At home in Eugene, Oregon, Jacob passes out 1” pins that remind people in our community to ‘Check Your BP.’

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Thanks to an incredible partnership between Doernbecher Children’s Hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his CHD story with the hope that it will inspire others who are affected by CHDs to find strength and persevere through the rough times. Jacob designed a classic- the Air Max 95 Premium. His shoe design has a lot of ‘double meanings’ that he hopes will strike a chord with the CHD community.

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The shoe features a custom made circuit board pattern with his name worked secretly into the circuitry. The toe of the shoe is blue and transitions to red by the time you get to the heel. For Jacob, this represents his blood flowing strong through his once obstructed circuits.  The colorway doubles as a nod to his favorite superhero and inspiration, Spider-Man. On the back upper you will find Jacob’s two thumb prints overlapped into the shape of a heart and the sock liner has a heart rate monitor that says ‘I walk to my own beat.’ Jacob plays the drums and he loves that the drum beats, and so does his heart. The tongue has a “JB” logo, representing his initials. But, if you look closely you will see that the ‘B’ isn’t quite connected all the way – just as his aorta was disconnected, it actually forms a 13 which is the age Jacob was when he got to create this shoe.

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Jacob’s shoe also features the signature of Stan Lee – Spider-Man’s creator –  in the air pocket on the sole!  When Make-A-Wish granted Jacob’s dream to meet the legendary comic creator earlier this year, Jacob took the opportunity to ask ‘The Man’ if he would lend his signature to his custom shoe. Jacob is likely the biggest Spiderman fan you will ever meet and getting his ultimate hero, Stan ‘The Man’ Lee to sign off on the shoe was absolutely excelsior! Jacob also had the opportunity to work with his team of Nike designers to develop a very stylish hat and hoodie, which go great with his Air max 95 Premiums!

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Jacob hopes people in the CHD/heart health community will want to help him spread the word by wearing some of his custom designs. You won’t have to wait long; the collection will be available November 21st in select Nike stores and online at Nikestore.com with 100% of the proceeds going directly to OHSU Doernbecher Children’s Hospital.To date, this partnership has raised over $11 million for OHSU. Our family is very thankful to be part of a community with CHD heart heroes and warriors that fight for a better future for kids and adults living with CHD.

For more information about Jacob’s incredible story visit his website at www.jacobsheartstory.com and ‘like’ our page – Jacobs Heart Story – on Facebook to show your support and stay updated on Jacob’s mission to spread the word about CHDs and heart health!

It’s In Your Hands

Being a heart parent isn’t easy. That’s no news flash. You’ve run the gamut of emotions from scared, to sad, to angry, then rinse and repeat. Oh yeah, and life doesn’t stop and wait for you to get it together either. There are days where you feel like maybe you’re starting to get it together, then comes a week where you’re feeling like the worst parent in the world. Through it all you try your best to hold on, and in this whirlwind of craziness that is our life we find ourselves craving encouragement. Well, Mom and Dad: I’m here to encourage you today.

I want you to take a deep breath, let it out, and then think for a moment about your hands. Think of all the things you use your hands to do. Next look back on this past week or two and remember a time where you used your hands to do some good. Maybe you used them to calm your heart warrior after a fall and a scrape. Maybe you placed a hand on another parent’s shoulder to let them know you’re there with them in their struggle. Maybe you’re making your famous spaghetti and meatballs that your kids love. How do you feel when you think of that moment? Let yourself be filled with that feeling.

Parents, there’s something special in our hands: something that brings joy and peace and safety to others. And that – in turn – makes us better. Let’s face it, we’ve seen a lot of profane things in this world: the tubes, the monitors, the incisions, the open chest and beating heart. We experience real fears and anxieties, real trials and struggles. In the midst of these things, though, is the work of our hands…and that work is sacred.

So when you’re pumping in that last tube feed and you’re tired, or you hammering out a supportive text message to another parent, or you’re shaking the hand of a lawmaker as you advocate for heart kids, or you’re snapping a fussy toddler with a beautiful scar into a car seat, I want you to realize that it’s sacred work you’re doing, in the midst of all the profane things we face. And when you get down and you feel like it’s all for nothing, I want you to close your eyes, take a deep breath, and think about what your hands have done this week. Create a special place in your mind where that feeling resides and make sure you always go back to it. Because you’ll realize that after close inspection, your hands are often busy doing very sacred work. Stay strong, parents.

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BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Where You Least Expect It

So I learned a lesson from a monkey…and not even a real one at that…

My son Nolan has been into a variety of toys and stuffed animals, but not really anything he’s latched onto.  Until he found the monkey.  You see, the monkey is a not-flashy stuffed animal that was actually part of a diaper cake that was made for us when we had a baby shower for our first son, who is now 5.  Somehow this monkey has traveled with us all these years, looking for the right child to obsess over him.  Enter Nolan.

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Needless to say, Monkey is Nolan’s homeboy.  Well one day things got interesting, because it occurred to us that we hadn’t seen Monkey in awhile.  Was he in the van?  No.  Was he under Nolan’s bed?  Nope.  In the wash?  Nah.  It was a great mystery.  The good news was that Nolan actually hadn’t been asking for Monkey, so we had time to figure it out.  What I was dreading, however, was the thought that Monkey was lost somewhere, like the grocery store or the mall.  Then, out of the blue one day, Nolan started asking for Monkey…and he walked around everywhere with my wife looking for him.  Oh boy.  So I ran upstairs and began looking myself.  I looked in the closets and in all the rooms, behind dressers, etc.  No Monkey.  I was exasperated.  Where the heck was the Monkey?

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Then I looked at the place I would’ve least expected it.  See, the underside of my oldest son’s bed is actually two big drawers that pull out.  Of course, I already looked in those drawers for Monkey with no luck.  Something told me to pull the drawers out and see if, by some CRAZY chance, the Monkey was back there.  I got down on the ground, looked, and there he was!  It was a triumphant moment as I bounded down the stairs and victoriously presented Monkey to my happy little boy.  YESSS.

So what on earth does this have to do with anything?  You see, as a Heart Parent sometimes things get difficult, sometimes they’re frustrating, and sometimes they’re just plain overwhelming.  There’s not enough time, not enough sleep, and not enough good news to go around and make things better.  We know what it’s like aimlessly roaming the hospital halls just waiting, or that nervous feeling in the pit of your stomach when the calendar inches towards the next cardiology appointment.  In those crazy moments, there exist other moments of joy, victory, and confidence.  We always want those things to exist in places where it’s obvious, almost like it fell out of the sky into your lap.  I wish I could say that’s always the case.  You have to find those moments…and often they’re not where you expect them to be.

It can be in the car, stuck in traffic, when the song comes on…you know, the one you haven’t heard in foreeeeever, that makes you smile.  Or it could be that other parent, you know, the one who has it all together while you’re a mess; and they tell you you’re doing an awesome job.  Or maybe it’s on that day you have to leave for work at 5am and you look up at the stars still in the sky and the beauty of it takes your breath away; and you realize that while your world isn’t always perfect, it can still be stunning.  Friends, don’t let those moments pass you by: they’re like little treasures that you stumble across from time to time and if you learn to appreciate them, you won’t be able to help but to smile and get that feeling like “Hey, I’ve got this!”  So don’t forget to look around from time to time, find moments where you can help others, find your “monkey,” and remember that it’s ok to just smile and laugh sometimes!

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 Chris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

5 Things You Shouldn’t Say to a Heart Dad

The Pediatric Congenital Heart Association strives to empower whole families dealing with congenital heart disease.  That includes you, Dad.  Thanks, Chris for the great reminder! Dad, we’ve got your back and will strive to be more intentional!

Let’s just put it out there: for a long time Dads have gotten a bad rap in the media.  We don’t know what we’re doing, we can’t clean a thing, we only care about beer, and kids?  Well they just baffle us.  It all came to a head a few years ago with this epic Clorox ad:

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That, and another diaper ad where they tested a diaper’s strength by “leaving kids with dad” really started to change things and the portrayal of Dads is shifting from more Homer Simpson to dedicated, loving parent.  I’m all about poking fun at myself – heck, you’ve seen it on my blog countless times – but I also refuse to be labeled as incompetent.  When you throw a complex Congenital Heart Defect into the mix the result is a new normal.  So here’s a few things that anyone (both guys and ladies) shouldn’t say to a Heart Dad:

1.  Man Up

The idea of toughing things out and “being a man” totally doesn’t apply to a Heart Dad, I don’t care what you say.  I could’ve never dreamt up the things we’ve gone through with Nolan…and honestly, nothing could have prepared me for what we went through.  Being a Heart Dad is emotional (another traditionally “non-man” thing) and exhausting.  When it beats you down – and it will – it isn’t a sign of how manly you are.  Even though guys have a hard time showing emotions or asking for help, we do need a lot of support from others to make it through this.

Say this instead: “Dude I can’t imagine what you’re going through.  Let me know how I can help.”  Which leads me to my next thing…

2.  Let me know how I can help (but never help)

We’ve all been subject to this one: everyone wants to help, but how many people actually show up?  I’m not trying to sound mean or ungrateful, but there are times where – YES- you need that help…and where is everyone?  The offer to help is great, but good intentions don’t equal actual help!

Say this instead: “Hey man, I wanna bring you guys dinner: how does tonight sound?”  We sometimes have a hard time asking, so just offer!

3. Does this mean no sports?

Yep, you guessed it.  My life became a failure once my son was born with half a heart and probably wouldn’t be the Yankees centerfielder of the future.  Woe is me.

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Believe it or not – and this will shock you – some Dads are about more than sports.  Fellow men: we’ve come to grips with the reality that sports probably won’t be a big thing in our home…and it’s alright!  So what if my son may not play baseball?  He’s alive right now and kicking CHD’s butt…and that’s what I want to cheer on.

Say this instead: “Bruh: your kid’s really doing this thing!  Awww yeah!” Or something positive and supportive along those lines.

4.  Guys don’t do that / Awww must be mommy’s day off

It drives me crazy when Dads get stereotyped but it also drives me nuts when Dads stereotype one another.  In this new normal, there could be lots of things you’ll start doing that maybe you’ve never done before: groceries, more cleaning, LOTS of laundry, dispensing medications, struggling through feedings, etc.  I can’t stand it when guys have this pre-set list of duties in their heads, as if it makes you less manly to wash a dish or two.  You know what?  Tonight I helped make dinner, gave 3 kids a bath, did a load of laundry, washed a sink of dishes, fed 2 picky kids and tube fed another, swept the floor, and picked up toys off the floor, and read the kids books before bed.  To me, that’s some manly stuff right there.  Guys it’s not enough to just bring home the bacon.  You need to pull your own weight *mic drop*

Oh wait, I’m not done.  For everyone else, please don’t trivialize a Dad who is out there trying.  It’s bad enough we had to see our kids struggle for life: I don’t need your fake pity in the grocery store.  Heart Dads do a great job of taking care of their kids…it’s not “Daddy is the babysitter” time or “Mommy’s day off.”  It’s called being a parent. *now the real mic drop*

Say this instead: “I don’t know how you do it, but you’re doing a great job!”  It’s not an ego boost as much as it’s simple positive affirmation.  This journey is new for us, and it’s new almost daily: we’re doing our best to get through it without our kids being all jacked up, so a little kindness towards us goes a long way!

5.  Nothing

This one is a toughie because I don’t think it’s something that’s done intentionally.  I’ve been on multiple CHD websites and facebook groups, and I often see posts for advice that feature the same wording “Hey heart Mommies” or “Any heart Moms out there know about…”

I know you’re not intentionally leaving out the Dads, but unfortunately it’s there and for awhile I would answer these posts with “Heart Dad here…” because I wanted to show that, hey…we know stuff too.  There are people out there who write “Hey heart families”…and kudos to them.  Again, I’m not saying you’re wrong when you write things to other Heart Moms…it’s important to have those connections too.  But part of why I started my blog was because there really wasn’t a lot out there for Heart Dads: I didn’t see a lot that was honest and humerous and written in a way that I could relate with.  And you know what I’ve discovered?  There’s A LOT of Dads out there who are looking for the chance to have a voice too; they’re looking for the chance to be connected and have a seat at the table.  We don’t want to be portrayed as the dudes in the background who help out every now and then…we want to be a major player, and we can be!  Sometimes you just have to remember to leave room for us at the table.  I appreciate every Heart Mom out there for giving birth to our Warriors, for being nurturing and kind and for keeping us all going without running into traffic.  Heart Dads: you’re important too, and we’re all in this together.

Say this instead: “What do you think?”

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Be The Forest

One of the founding principles of the Pediatric Congenital Heart Association is collaboration.  We recognize that it takes a strong network of people to succeed, whether it is advocating, educating, or simply just making it through the day.  As Chris describes, we all need to be part of the forest.

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I’ve said it once and I’ll say it again: Heart Parents are strong.  There’s something about the combination of worry, knowledge, lack of sleep, and ungodly amounts of caffeine that make us nearly superhuman.  There’s no one tougher than us and our kids, right?  I like to compare our kind to the mighty Redwood tree.  You look at them and are amazed at how big they are and how strong they look…they’re a marvel of nature.

Despite our ability to kick into beast-mode nearly at will, there are in fact times where we stumble and fall.  We get stressed out, we burn out, the hospital bills arrive, the van breaks down, your kid threw up his entire feed…AGAIN.  Sigh.  And suddenly we go from Redwood to dandelion, just ready to blow away at the next little thing.  You ever get this feeling?  Or is it just me?

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Here’s an amazing fact: I read somewhere recently that while Redwoods are absolutely gigantic and look so very strong, they actually have a very shallow root system.  That seems absolutely insane, considering how huge those trees are, but it’s true.  The powerful thing I learned from this is that while Redwood roots are shallow, they extend outward to support one another.  This keeps them from starving, this keeps them from blowing over in the winds and storms…each other.

Please realize, Heart Moms and Dads, that despite how alone and frustrated you might feel on any given day, you’re not alone.  Not at all.  Reach out and find someone to talk to, someone to hear your gripes, someone who will support you because they’ve been there.  Look into your local community for heart families to connect with.  Use social media: there’s tons of groups out there too.  You’ll quickly find there are people out there just like you, no matter how messed up you may feel.

And when you’re on top of your game and feel like you’re rolling along, then you should reach out and help someone else.  There is an estimated 2-3 MILLION people living with a CHD…and their parents add to that number.  Think about what difference we could make if all of us reached out to help one fellow CHD parent.  Think about it.  Use what you’ve lived to help someone see the sunshine…and when you’re in that dark place – and you will be – someone will be there to help you.  A fellow guest blogger here with PCHA put it perfectly: this is a marathon, not a sprint.  I will say that during this marathon ALL of us will stumble, and when that happens will you be the one to stop and lend a hand?  Will you find yourself without a hand to hold?  I hope not.

For some of you this is very challenging: it requires you to reach out of your comfort zone and maybe rip open some old wounds.  When you do that, though, you will help others heal.  For some of you, the help starts with you.  You know how the saying goes, you should love your neighbor as you love yourself…but I’m willing to bet there’s some of you out there that I don’t exactly want loving me based upon how you love yourself.  Ouch, I know.  But it’s true and you know it.  You’re doing a great job, Heart Mom and Dad.  Keep it up and keep running…keep your hands outstretched to help others.

Let’s be that mighty Redwood forest together…because it’s more than one tree, it’s all of them working as a team to support one another and survive.  Do you want to see more CHD research?  Advocate for it together.  Do you want to give the best care to your heart warrior? Work together.  Do you wish to one day see the end of CHDs?  Fight for it together.

There’s an African proverb that sums it up best: “If you wish to go fast, go alone.  If you wish to go far, go together.”

Be the forest.

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BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

 

Ultra-Marathon Runners: The Value of Continuing Support for CHD Families

The Pediatric Congenital Heart Association recognizes the need for open, honest communication to empower patients and parents of children with CHD.  As Margaret describes, support can come from many people: doctors, nurses, or those who have walked this journey ahead of us.  The need for support does not end when you leave the hospital. Contact your hospital for information about local peer support or visit mendedlittlehearts.org for a list of congenital heart support groups across the country.

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Early on in our journey with CHD, when we were still in the hospital with our newborn baby, I was starting to get impatient, worn down, and, like any new mom, longing for the day we could finally take our son home and introduce him to life beyond hospital walls. I hadn’t yet met any other heart parents in person, and I was feeling overwhelmed from the 29th or 30th night of sleeping in a hospital pull-out chair, pumping milk, and spending the day next to our son’s hospital crib feeling pretty helpless about my entire role as a new heart mom at the hospital bedside of a brand new baby. I was starting to express my frustration to any doctor or nurse who entered the room.

“This is a marathon, not a sprint,” one of the nurses told me gently but firmly. “You have to remember that with these hospital stays.” And I did remember those words for subsequent surgeries. Hospital stays really do feel like marathons. But the challenges of CHD don’t end with surgeries or hospital discharges, and neither does the need for a supportive CHD community.

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Photo by Mako10

Last weekend, I attended a daylong training program on how to provide peer-to-peer support to other heart families. Almost seven years into this journey, despite providing informal support to many fellow heart parents over the years, I feel a pressing need to actively, continually learn how I can be the best member of a supportive heart parent community I possibly can.

These thoughts had long been weighing on my mind:

How can I support parents just starting out on this journey? How can we provide better continuing support to heart families post-surgery? How can we provide a continual, supportive network to heart families across the entire lifespan of CHD?

I can still remember one of the very first local heart moms I met whose son’s CHD is almost identical to my child’s. The relief I felt when I found out her child was a few years older than mine and they were enjoying their lives and loving their family. The weight that was lifted off my shoulders when I learned the first several months had been a big challenge for them, too, and that I wasn’t alone in my feelings, and that I wasn’t “failing” by thinking this was hard. All these years later, she is still the person I would consider my “go-to heart mom” for all things related to this journey.

My son will be 7 this summer, and though that shouldn’t sound old, it’s been almost 3 years since we were inpatient and going through the Fontan surgery, the last of the 3-stage surgeries for HLHS and several other single ventricle heart defects. These days, when friends in the CHD community are facing the Fontan and they ask me things such as, “how many calories per day will my child be able to have on the low-calorie diet?” or “What’s the latest protocol for warfarin, post-Fontan?” I start to reflect on how I am no longer always up-to-date on the changing protocols and guidelines, which can vary across institutions and individual patients, let alone over time. How much more do I feel that way when new parents are facing the earlier Norwood and Glenn surgeries, and ask me if they’ll be able to breastfeed their baby, or how many visitors are allowed in the NICU at a time, or how many cubic centimeters of formula their baby should reasonably be taking per day.

I don’t feel like an “older” heart mom (despite my–ahem–growing age)–after all, to me, those are the women who have walked much further on this road than I have, the ones I myself look to for invaluable support, advice, and information. The ones who have truly pioneered a world where we still have no definitive outcomes, who have gone before and mapped at least a few roadmarkers in relatively uncharted terrain. I feel like a middle child in our larger CHD community. I find wisdom from parents further along on this journey absolute gold, yet at times feeling increasingly out of touch with the finer details of the very earliest years. Maybe my role from now on is only advocacy, and I should leave the support part behind, I started to think. But as much as I love the variety of ways to participate in CHD awareness, the thought of being no longer relevant as a support parent and stepping away from the social aspects of being a heart parent made me feel sad.

It turns out, however, that it’s not about knowing all the answers to all the latest questions, or being a walking database of information. Medical questions are often best referred to doctors and nurses anyway, and information can always be found out with a little help and digging. What parents most often want is to talk to someone who has been through a similar experience and is often on the other side of what they are currently going through.

Doctors, nurses, and other professionals are wonderful sources of information, and parental support is certainly not meant to replace that. Parental support is meant to provide a calm and listening ear that isn’t constrained by busy hospital schedules or interrupted by pagers or alarms. It provides hope, encouragement, and empathy. It doesn’t have to–and often shouldn’t–involve fixing problems, having all the answers, giving advice, or telling a parent how to feel or act. It provides reassurance in what for many parents will be the scariest hours of their lives. However, other parents have been through what most of the doctors, nurses, and other professionals haven’t–hearing your child has a heart defect, handing your child over for heart surgery, and dealing with new normal that is life with CHD: the what-ifs and unknowns, the fears, the everyday challenges and victories, and the uncertainties of life with a “heart kid.” At the end of the day, the doctors, nurses, and hospital staff are there to treat the patients–our children, not us–and rightly so. That is what they are there for, and no parent would expect or want anything less than our children’s health to be their number one priority. Parental support allows someone to take a few minutes or an hour to pay attention to the parent first and foremost, and give him or her an outlet for their feelings.

The value of peer and family support, however, has an additional reach. Recent research conducted by Mended Hearts found that adult cardiac patients who had received inpatient visits from Mended Hearts volunteers felt more optimistic and had lower rates of hospital readmission for chronic conditions such as heart failure. When asked how Mended Heart volunteer visits were helpful, the most cited area was “support from someone with a similar experience,” even more than receiving information about their condition or the volunteer organization itself. These findings were especially significant in patients who were dealing with a chronic cardiac condition that required lifestyle changes–a description that applies to many heart families managing their child’s heart condition.

But the benefits don’t have to stop once families leave the hospital. An article published in the February 2015 issue of Cancer (a journal of peer-reviewed scholarly articles) described the findings of a study of breast cancer survivors who were experiencing post-treatment stress. The study found that the women who attended the support group did not experience the negative “biomarker of psychosocial stress” (in this case, a shortening of telomeres in their chromosomes, which speeds the aging process of the human body) that the control group that received no support group time did. The women who attended the support group had very similar results as a second study group of distressed survivors who attended yoga and meditation classes!

Finally, then, there is the need to provide continuing support and the sense of a sustaining community to heart families beyond those early years. As our children grow older, they (and we as parents) often deal with a new set of issues that can leave us, and our children, feeling isolated if we don’t have a supportive community around us.

Some of these issues might include:

–screening for developmental delays and obtaining access to services such as speech and physical therapy

–feeding problems, oral aversion, weight gain, and diet challenges

–setting up IEPs and 504 plans as our children enter school

–staying on top of the latest research developments in the CHD world, and what those mean for our child’s medical care and long-term options

–secondary complications or other health problems facing the patient or other family members

–seeking therapy or coping strategies for PSTD, anxiety, and other psychological complications members of heart families are at risk for

–support for siblings, who often feel left out, anxiety regarding their brother or sister’s future, or who deal with grieving

–potentially dealing with heart (physical) and health limitations

–your child’s growing awareness of his or her heart defect and mortality, the need and responsibility of self-care, peer pressure, bullying, how your child can talk to friends and potential boyfriends/girlfriends about their heart defect

–survivor’s guilt (sometimes seen in older heart children who have lost friends)

–dealing with the possibility of rebellion and risky behavior in young adult and early adult years

–transition to adult CHD care and your child managing their own health

–body image, birth control, pregnancy and parenthood, and much more.

–livelihood and financial management as an adult CHD survivor.

Heart parents want comfort and reassurance–but they also want honest answers, and to be equipped for the unexpected. It isn’t ethical to make false promises to new heart families that “everything will be just fine” or “you have three surgeries, go home, and that’s it.” Indeed, I would argue such statements do a disservice to members of the CHD community who are facing uncertain times, and ultimately, can contribute to a culture of denial that many are trying to move away from. We can’t pretend that it’s easy for any parent to hand their child over for open-heart surgery. We can’t pretend that hospital stays aren’t challenging feats of physical and mental stamina. We can’t pretend things will always be free of complications and unforeseen outcomes. Support is, “It won’t always be easy. But no matter what, we are here for you. You are not alone.”

“This journey is a marathon, not a sprint.” Even now, all these years later, I remind myself of those words during the times I need patience, answers, or fixes. I would argue that the scope and span of the entire CHD journey feels more like an ultramarathon–and we runners are here to cheer each other on for the long haul.

Margaret King bio

Margaret King is a stay at home mom who loves spending time with her family, avidly reading, community gardening, traveling, and exploring the outdoors. She is currently working on a young adult fiction series and enjoys flash fiction and science fiction writing as well. Margaret has worked in the past teaching English abroad in Nepal and Mongolia, which she counts among the best experiences of her life, along with her heart family journey which she is so happy to share with our readers.

Can You Hear Me Now?

Guest Blogger Chris Perez knows first hand that even the littlest action can have a big impact. The Pediatric Congenital Heart Association offers many ways to get involved.  Click on any of the following for more information or to get involved: volunteering, contacting your lawmakers, sharing your story.  By working together, even the smallest of actions can help Conquer CHD.

 

Can You Hear Me Now?  Good.

Remember this guy?

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Yes, I’m bringing back the Verizon Wireless Guy, who used to walk around saying “Can you hear me now?  Good.”  It was all about the strength of Verizon’s network and the ability to be heard clearly wherever you are.

Stories about heart warriors are always struggling to be heard in a busy and noisy world.  Still, they need to be heard, and we want them to be heard.  As a heart parent, I’m sure you’re connected with lots of other heart parents and it seems like they’re doing some spectacular things like speaking at conferences or even traveling to lobby with government.  And you…you can barely get out of the house.  You just want to be heard.  Well fear not, heart parent: you can still be heard on a smaller – and still VERY important – scale.

It’s OK to Start Small

While your first inclination is to go BIG – this is about your child, after all – lots of big things start small.  Doesn’t a fire start with a tiny spark?  So maybe you can’t make a trip to Washington DC or to your state’s Capital to do some lobbying.  All is not lost: you can still do it at home.  Start with your Mayor or City Council.  Schedule some time to tell your story and see if your local government can help pass that story along.  You’ll find that they love to hear from their constituents and possibly even have much more time to listen to you than someone in a larger level of government.  I remember reaching out to the Mayor of Charlotte regarding a proclamation for CHD Awareness Week and in a week or so I actually received one in the mail, which was really awesome!

Local news is a great way to share your story too: tv news, the newspaper, and even those smaller, local papers are great.  People complain that the news is full of bad stories, but I promise you they love good news just as much as you do.  There’s a weekly paper in my area that has done a really awesome job of sharing my son’s journey and people do, in fact, read that stuff!

If you’re shy and those things aren’t for you, then maybe you should consider starting a blog of your own.  I can attest to the power of the written word only through a blog: it’s given me an opportunity to connect with people throughout the world.  And all you have to do is type!  Likewise I encourage you to share your story with the Pediatric Congenital Heart Association: just go to http://conqueringchd.org// and click on “Share Your Story,” and off you go.  You never know how your words can uplift someone who needs it.

Get Involved

Weaving yourself into the lives of others is a great way to share your story in a meaningful way.  Of course, I definitely encourage you to stay involved with the efforts of the PCHA: educate yourself, share with others, and advocate for more CHD research.  Take some time to look into local groups as well: maybe it’s a patient/family advisory committee through the Children’s Hospital, a support group, or a local chapter of a group like Mended Little Hearts.  These are opportunities to support and be supported and I can’t stress enough the importance of this.  My local group is called Camp Luck and they do amazing work that involves supporting families and running a medically-supervised camp for heart kids.  They hold lots of events throughout the year where my kiddos can come and play and you know you’re in the room with family: everyone understands you.  We’ve had the chance to meet some really cool people and when we get to share in our experiences, we find we get stronger.

Maybe – just maybe – you have some extra time on your hands.  What to do with it?  Volunteer!  There are a lot of heart parents who volunteer at their local hospital and it’s a wonderful way to give back.  There is tremendous value in being a volunteer, both personally and to the organization you’re supporting.  People also listen to volunteers: if you’re passionately involved at the Children’s Hospital, for example, it can open doors to sharing your story and helping people out because that passion will show!

Make Sure Your Opinion Matters

Ok Heart Parents…let’s be honest with one another here.  After a hospital stay, you get home and work on getting back to normal.  In the mail comes…dun dun dunnnn…a survey.  You throw it away, don’t you?  Come on, admit it!

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Well I have some news for you…these surveys are important…REALLY important!

You see one of the big changes in healthcare today involves the patient experience.  There’s the realization that people come into the hospital automatically expecting excellent medical care.  Duh.  I mean you don’t go in and say things like “I hope they operate on the correct knee today!”  Good quality care is a given, and it’s something that healthcare has been touting for years.  While that’s still important, healthcare is realizing that patients and their families have to actually be treated like human beings.  Have you had a rotten experience in the hospital?  Tell someone.  Feel like you don’t matter as a parent?  TELL SOMEONE!  Hospitals now have staff who handle these things day in and day out…and it’s not a mindless complaint process: they dig into data and look into root causes of problems in healthcare…and ultimately they work to fix that culture so the complete and total experience in the hospital is the best it can be.

So where do you think the hospital staffers get their data?  You guessed it: SURVEYS!  That’s why they’re so important: if your hospital is awesome, tell them they’re awesome…it really goes a long way.  If it wasn’t the best experience, say so in your survey, because nowadays a lot of federal reimbursement for hospitals is tied to patient experience scores and goals.  So it’s in their best interest to give you the best experience possible.  Now that doesn’t mean you should demand ridiculous things from your medical team, but rather they should be treating you with human connection, empathy and compassion.  They should communicate, they should treat you as if you were their loved one, they should include you in the whole process.  If they don’t, speak up!

Help out your local Children’s Hospital by filling out your surveys and providing good, honest feedback…it’s how your story can help them improve!

It Only Takes a Spark

What does it take to have an impact with your story?  Not a whole lot.  You don’t have to go big or go home: you can start small and let the fire build.  I really want to encourage you to reach out to local media or local government, get involved in your community, and make your voice heard through surveys!

 

BlogHeadshotChris Perez (aka HLHS Dad) lives just outside Charlotte, NC with his wife and 3 sons – including Nolan, who was born with HLHS in 2012.  He is the author of Half Heart. Whole Life: an HLHS Dad’s Blog, where he shares his journey as a heart dad with honesty, humor, and the realization that dad’s just handle things differently. In his spare time – if such a thing exists – Chris enjoys New York Yankees baseball, playing guitar, and memes.  You can visit Chris’ blog at http://hlhsdad.com.

HLHS Dad goes to Washington D.C.; Part 2

Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015.  Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life.

Read the first part of his story here.

Day 2 of the Congenital Heart Legislative Conference was definitely an early start.  We were supposed to report for breakfast starting at 6:45am and that meant an early wake up time and packing up so I can get checked out of the hotel.  Luckily for me I usually get up at 5:45am for work, so it wasn’t a big deal…plus you can’t beat the commute of simply riding an elevator downstairs.  I got all my stuff together, including my bowtie swag (I gotta look fresh to death) and was ready to head to Capitol Hill:

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After a good breakfast we were grouped up by state: there were a total of 5 of us from the great state of North Carolina.  We were given a list of the legislators we were scheduled to meet with.  My list had Congressman Richard Hudson, Senator Thom Tillis, and Senator Richard Burr.  The good news was that several members of our group were scheduled to meet with different people and most of us had the time to go together to these meetings, so I had a total of 5 meetings that day.  Of course, it would be an interesting day if we didn’t have some interesting weather: it was snowing in DC and Government was supposedly on a 2-hour delay (delayed government?  what?), but supposedly all of our meeting times were being kept.

So off we went into the tundra (it wasn’t that bad) and set out for our first meeting of the day:

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Congresswoman Alma Adams

Congresswoman Adams represents the 12th District in NC, which includes Charlotte and parts of Greensboro.  We actually arrived to the office at the same time she did and she was very nice about greeting us.  As we waited I was really nervous about getting the day kicked off because I really didn’t know how these legislators would respond to our requests.  In a small way I thought it would go something like this:

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Luckily, it did not.  Ms. Adams invited us all into her office.  She listened to our stories, asked some good questions, and was really patient with us.  She applauded us for coming out, in this weather, to share our story…and that it was so impactful because we’re parents and not paid lobbyists.  After spending time in training hearing that we might not get more than 5 minutes total, I think we must’ve spent at least 20 minutes with Congresswoman Adams.  At the end of our meeting I gave her the card with Nolan’s pictures on them and she smiled as she looked at it and said “Well hello there, Nolan. Aren’t you handsome?”  It came with such a genuine kindness and I think we couldn’t have kicked off our day with a better experience, especially for us first timers.  I know these legislators are busy and I expected to meet mostly with staffers (which is ok) but it was nice that Ms. Adams gave us a moment at the start of her day.

The fun doesn’t stop there, read the entire post here.