Why I'm Thankful for the Friends of My Son With Congenital Heart Disease

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My 12-year-old son just passed the six month anniversary of his fourth open-heart surgery (fifth surgery overall). Last week we took a road trip from Tampa, FL (where we live) to Cooperstown, NY where he played in a week long baseball tournament with his best friends. It was a once in a lifetime experience he talked about for years, but something that, quite frankly, I was worried might not be in the cards for my son.

I never told anyone — not my friends or family, and certainly not him — how worried I was his dream might be over. Like so many other  congenital heart disease (CHD) moms, my thoughts were consumed by questions, fear, worry and sadness.

You would think by now I would have known what to expect, but I should have known better. I’ve learned over time that each CHD child and each instance and experience is different. This time around — in some ways — was just as hard as his first surgery at just 13 hours old.

I see a lot of articles and blogs for parents about babies and toddlers going through the CHD experience and what that means. But no one really talks about what happens as time goes on for the kids who continue to need intervention.

This age is hard. You realize he’ll always love you, but it’s his friends that are starting to see him through. I didn’t realize how true this was until they saved him.

Unlike a young child, my son is educated on his history, he knew what the surgeries entailed, what the risks were. At 12, hormones and emotions now play a huge role. Watching his spirit break broke my heart. Depression. Hopelessness. No will to push. This isn’t my son, is it?

All we could do was encourage him. It took some time, but slowly we got our first smile. Then another. And eventually we went home.

But even then, it took more time. Going home just ushered in a new phase of insecurity for him. He had a new, bigger scar. He couldn’t play sports with his friends. I distinctly remember him saying to me, “I don’t think my friends are going to want to hang out with me anymore because I can’t do the things they want to do.”

Of course, this was not the case — in fact, it was the opposite. These boys — oh how I love these boys — lifted him up. They helped bring him back to us.

They called. They texted. They stopped by. They made him laugh. They changed the rules when he was around. But most of all, they never left him behind.

Having just returned from this once in a lifetime experience, I can tell you the first time he took the mound to pitch, I definitely shed some tears. They won together and lost together. But he was there with his baseball brothers, his best friends. It’s something they’ll never forget. They took in each and every moment not just as teammates but as best friends, the ones who never left him behind.

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Editor’s note: This story has been published with permission from the author’s son.

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Anxiety and Depression Are More Than Just Side Effects of Chronic Illness

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I want to talk about something that is almost taboo, especially if you already have a preexisting illness – and that’s mental illness. It can be hard to admit it might not just be a “bad day,” especially when you have a bad week and you can’t get out of bed. It can be hard to accept that maybe it’s not your physical ailment keeping you down, maybe it’s not that medicine you’re on, maybe it’s more. The biggest problem I’ve come to realize in my own journey is it’s hard to accept I not only have congenital heart disease and numerous medical issues, but the way I view myself and the world around me isn’t “right.” The hardest step for me was to ask for help from a professional, because I didn’t want to admit there was something else wrong with me.

woman standing on a balcony watching the sunrise

Everyone has their own demons and sometimes one person’s demons are a little too big for them to fight on their own. I realized something was wrong when making a simple decision felt like a life or death situation. Having anxiety is knowing the problem isn’t that bad, but no matter what I do or how much I breathe and calm myself down, I can’t let go, I can’t get ahold of the situation and I can’t deal with it.

Everyday tasks seemed to break me down, because every decision I made felt like there was a tremendous consequence I couldn’t avoid. Now let’s add having already existing medical issues that forced me to make decisions, and most times I couldn’t take those back. The anxiety of knowing the well-being I held onto could crumble down with one wrong decision about even a simple task makes it nearly impossible to close my mind off, yet I think ,“If I just stay where I am, I don’t have to make any decisions and the world will still go on without me getting out of bed.” My anxiety had become comfort food to my depression.

 

I started seeing a specialist and I’m working on putting my demons to sleep. I’m working on being the best me I can be in any situation that is thrown my way. I wanted to write this so others know that even though it hurts, and you may think you’re the only one going through this, you’re not. We might all have our own demons and our own way of dealing with stress due to the outcomes of our lives, but you are not alone and there isn’t something “wrong” with you. It may feel hard to burden others who work so diligently on getting our physical health by telling them you’re breaking down on the inside too, but it’s so important they know.

Through my journey, I’ve learned that my mental health plays a big role in the way my body feels, acts and reacts to stress, and how having a rein on it is helping keep my heart healthy(ish).

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Please Don't Call Me 'Brave' for Living With Congenital Heart Disease

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Nothing about this is brave, it’s a matter of survival. Hearing people say “You’re so brave” has always made me feel uncomfortable… like what choice did I have? I was talking to one of my friends who has a different congenital disease and we don’t understand why people say it to us. Those who had a choice and chose freedom, the law, and their country, those who were thrown into a situation at such a young age — to me, those humans are brave. I get backlash when I tell those who don’t understand, and I guess if you’ve never lived with it you would consider waking up and moving forward with everything on my plate brave. I’m sure most of them don’t know that most of the times those plates crash to the ground and I just walk away from it.

 

I work in retail and sometimes I have customers who ask about my scar (I’m usually surprised and happy to answer their questions) and they almost always call me brave and I usually say thanks. One time I was pleasantly speechless when a customer said, “Well that sucks”…Yes! Yes, it does. He preceded to ask why I had a big grin on my face. If you want the lowdown, here it is: It does suck. Having to make contingency plans, never running out of medicine, spending money on medical needs instead of adventures, having a hospital bag pack always, and continuously thinking “What’s next?”

If I had to call myself anything I would say I’m resilient. I say this because as many times as I get knocked down I get back up; not because I think I’m going to win, not because I have this love of getting beat down, but I want to keep moving forward. The only way to keep moving forward is to make any and all efforts to continue your life even after the final blow and you can’t get back up. Guess what? You can get back up, you can throw that punch, wipe those tears, gather your thoughts and move onward. I’ve lost many battles with my health physically and emotionally, but I can’t give up until there is nothing worth fighting for. And right now, I have plenty to fight for.

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What I Want My Friends to Know as Someone With a Congenital Heart Defect

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Typically I don’t mention that whole heart condition thing unless I’m really close to the person. I found out the hard way that people sometimes treat you differently once they know. They act like you are weak and can’t do anything. Instead of asking if you need help they assume you do. Or they stop inviting you to things because they think you’d be too tired to go anyways.

I don’t look like I have a chronic condition. I’m not in a wheelchair, I don’t have any visible medical equipment. I do have a pacemaker but unless I’m wearing a shirt with a shorter neckline you wouldn’t know I’ve ever had heart surgery. I look perfectly healthy from the outside. This makes not telling people easier since most people wouldn’t guess I’m suffering from anything.

But it is hard when you have the energy to go out but people don’t invite you in the first place. Because either they know about the condition and assume you’d say no since you said no the last few times or you’ve flaked so many times that they stop asking you, thinking you’re not interested. Then you feel like you miss out on amazing adventures because you spend you evenings watching Netflix and writing.

In college I would usually go to bed around 9:00 or earlier if I didn’t have something with my sorority or a group project to complete. My roommates would go out around the time I went to bed. I missed out on some of the “college experience” because I couldn’t pull an all-nighter at school during finals week like all my friends did. If I did I would probably pass out the next day from lack of sleep; they could and still manage to be awake and alert during the 8:00 a.m. exam.

Here a few things I want others to do and know as someone with a chronic condition.

Treat me like a normal human being. Don’t baby me. Let me ask for help. Don’t assume and do the work for me. I like the accomplished feeling after I finish a challenging project.

Invite me. Even if nine out of 10 times I am too tired to go out. Still invite me because I want to feel included and valued. I want to go out when I feel great – not stay at home because you’ve made plans and didn’t tell me.

Surprise me with movie night or playing video games at my place when I say I’m too tired to go out because sometimes getting dressed and driving can be too much. But maybe call first.

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Thinkstock photo via macniak.

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Why I Have to Ask If Your Child Is Vaccinated

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Hey new mom friend,

Ashley here. Jackson’s mom — yes, that Jackson. The one with the trach, the one with the CHD (congenital heart disease), and the one your little one just invited over to play. Or maybe we set up the time to meet. Either way, I’m super excited to be getting together. Play dates are the best, right? Or is it the wine? Whatever — I’m pumped.

You see, Jackson spent a lot of time in a hospital. A lot of time being poked and prodded. A lot of time being a patient instead of a baby. So getting to do these kinds of things with him is amazing. And, it’s great for me, too. My husband and I spent a lot of time in that hospital, and we were so looking forward to the day when we could take him home and let him meet the world head on.

But, I have a question to ask you, and it may be a little personal.

Is your child vaccinated?

Ah, the “v” word — a word that is almost as emotionally charged as the last election. A word that a lot of people tend not to talk about because they believe “it’s personal” or “it’s a choice.” That it’s something that isn’t anyone else’s business — a family decision that affects their family and their children alone. But for us — it’s not.

Baby lying on a sheet, with connections to an echocardiogram

Jackson was born full-term, but that doesn’t mean he was quite ready for the world just yet. Born at 38 weeks, Jackson weighed in at about 5 pounds, not even hitting the first percentile on the growth curve. That’s OK, though, a lot of babies are born his size. But that wasn’t his only issue — he had a jaw that was too small and a heart that wasn’t whole and a belly that didn’t quite make it all the way to complete when it was forming. He was born with a lot of challenges — challenges we met with as much strength and grace as we could muster, but they were challenges nonetheless.

Along with these challenges came compromises, concessions that had to be made to allow him to grow and develop. He had a tracheostomy, bowel resection and open-heart surgery before 4 months of age, and all the while, we battled infections and illnesses, treating them the best we could, throwing high doses of very powerful antibiotics his way and stressing his system in ways that a baby shouldn’t have to be stressed.

We had to make another big compromise, too. We had always planned to get Jackson vaccinated. My husband and I have done the research and understand the studies. We know the risks and we know the benefits and we know that preventing diseases that can be prevented isn’t even a question for us, especially after seeing the aftermath of the ones we can’t prevent. The issue, though, is that vaccines aren’t always top on the list in a hospital setting. When it comes down to the question of “life-saving surgery” or “hepatitis B shot,” it can be easy to understand how one is chosen over the other. Plus, his immune system, already compromised from being in the hospital and having his little body opened up so many times, just isn’t quite ready to take on the vaccines just yet.

Sure, we’ll get there. We’ve talked to his doctors and have a plan to catch him up, but it won’t happen overnight. So, in the mean time, he’ll be susceptible to those preventable diseases we talked about before.

One of the arguments I hear a lot when it comes to a choice not to vaccinate your children is that they are your children — you know their medical history and what they need. They don’t have any problems that would make it hard for their bodies to fight off disease, so why do they need the help? Why not let nature take its course and treat the disease as it comes?

But there is Jackson, and the thousands of kids like him diagnosed with congenital heart disease at birth. Or the thousands of kids going through cancer treatment. Or the kids born with an immune system that wasn’t quite right or the countless other children who are too young or too sick or can’t be vaccinated for one reason or another. You probably wouldn’t even know some of them have had life-saving surgery or spent months behind hospital walls, but they have. And they need your help.

You see, when these little ones get sick, it doesn’t necessarily just run its course at home with a few days of bedrest and chicken noodle soup. It’s hospital trips, oxygen machines and rounds of antibiotics we hope work but that might just not because their bodies have been exposed to them so many times. It’s continuous monitoring and sedation and being set back even further when it comes to development. And, for some of these little ones, it might be the hospital visit they don’t come home from.

Maybe it’s too much for me to ask that you vaccinate your child because we can’t vaccinate ours just yet. Maybe it feels pushy or preachy or overbearing. Maybe it feels like I’m forcing my beliefs on you and not letting you parent how you see fit.

Or, maybe it’s not. Maybe it’s not too much to ask. Maybe it’s just one mom asking another to help her little one go to a daycare, school, or the playground without worrying. Maybe it’s one mom trying to give her little one a shot at a childhood free from the hospital he lived in for much of his young life.

So, I hope you’re not offended when I ask. And I hope it makes you think a little about your decision, one way or the other. And I hope you like white wine, because I brought two bottles.

Hugs,
Ashley

Follow this journey on The Adventures of Jackson and Juna and on Facebook.

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How My Mother Taught Me to Live With My Chronic Illness

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Some people receive a devastating diagnosis later in life, but for me, I received my diagnosis when I was born. I was unable to comprehend what my diagnosis meant and how it would alter the course of my life, but my mom could. She took the burden of helplessness, anxiety, and pain as I went through surgery after surgery on my tiny body and documented each moment of sorrow and triumph.

She knew from the moment I was born that I would not have the life of a typical child and that it would not be an easy journey, yet she did everything in her power to teach me that my life, which would be filled with surgeries, sickness, and pain, was worth living. I am able to identify now, as a young adult, three ways that my mom taught me how to live with my condition.

1. She demonstrated strength.

When a person receives their diagnosis, people often measure that person’s strength on how they handle the diagnosis. In my situation, it was about how my family showed strength and taught me to be strong. I know that watching her little peanut fight to survive was the most difficult moment in my mother’s life.

She chose to love me deeply, even though there was a great possibility of losing me. She was the first person in my life to show what true strength looked like and continued to demonstrate that strength as I grew older. She was the one who told me about the realities of condition, my limitations, the possibility of never having children, and when my next surgeries would come. She would cry with me and allow me to grieve the life I might have had, but always identified the positives in each new day. She showed me that strength comes from surviving difficult experiences, but also from an attitude of positivity, faith, and hope, even when there is little to hope for.

2. She always encouraged me.

Even after my doctor’s informed me of my limitations, specifically in the areas of physical activity, my mother never said I could not do an activity. She let me find my physical limits on my own even though she already knew them. She let me  participate in any activity I wanted to, but would always ensure that it was modified to maintain my safety and health. When other children would pick on me for my differences, she always encouraged me to stay with the activity and show the other children what perseverance is. However, if I really felt uncomfortable and said I wanted to quit, she would not ask questions, but help me find a new activity to do. My mom always pushed me and encouraged me to find my own interests and rhythm in life.

My family always loved hiking and it remains our favorite family activity. When I was little everyone could just take turns carrying me when I got too tired to continue, but as grew older, they had to find other ways to help me make it through. When my mom would notice me getting tired, she would sit with me while I rested or take my hand and help pull me until I made it to the end of our hike. It was always in moments like this where recognized her encouragement and unwavering support. Without my mom’s encouragement I know I would not have learned to live with my chronic illness.

3. She was my advocate and an educator.

When I was born, people where less knowledgeable and aware of congenital heart defects. People around me did not understand how a person could look so healthy on the outside, but have a body racked with pain and ailments. Since I was too young to understand my own condition, my mom was the one who took the time to educate strangers and peers on my diagnosis.

My mom would go into my local high school’s anatomy class during their cardiovascular system unit and bring diagrams and explain congenital heart defects to teenagers. We would participate in heart walks, support groups, and Make-A-Wish fundraisers to promote awareness and understanding about life threatening heart conditions.

She taught me about the many acronyms of my condition and took the time to show me through illustrations what was wrong with my heart, how it was repaired, and what would need to be repaired in the future. She took it upon herself to know my condition in order to best advocate for my medical care. She would ask for second opinions, pursue care from the best doctors and surgeons in our city, and never stopped asking questions. She would bring lists of questions about symptoms, changes, and concerns to each doctor appointment and when I became old enough, she would have me do the same. She taught to understand my tricky heart and how to best care for it.

My mom also believed me and trusted me when it came my body. If something did not feel right, she would help me seek care and find answers, even if it required seeing multiple specialists. When I was child my mom fought for the best medical care and services I could receive and as I grew older, she taught me to fight for my own quality care and how to educate the people around me about my chronic illness.

I’m so grateful to my mom who raised me and taught me to be positive and to have hope, despite a life of chronic illness. These words are a glimpse of the impact that a mother can have on a chronically ill child, but I will never be able to fully find the words to recognize and appreciate my mom for the strong and incredible woman that she is.

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Thinkstock Image By: Mandryna

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