Joe Valente when he was younger with his mom and sister, Anna

The Promise I Made to Advocate for People With Congenital Heart Defects

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After being born with a severe congenital heart defect (CHD), I’ve come to learn there are no guarantees in life. But far before I ever understood it, my parents lived it in a way that few can imagine. I have no doubt that congenital heart disease is harder on the parents than the children — the children were born warriors and only know how to fight.

Before my third open-heart surgery when I was in kindergarten, my prognosis was pretty dim. So much so that my dad prepared my friends’ parents of my potential passing. That’s something no parent should ever have to do.

In a moment of true faith and honesty, my mother made a promise to God. She promised him if he took care of her baby boy that she would take care of his children.

After I came out of surgery, I had the healthiest heart I had in my whole life. My family believed God had held up is end of the deal, and now it was time for my mom and my dad to hold up their end.

Six months after my return from the hospital, my house was now a foster home for six children. The care offered in my parents’ home was to many of the sickest children in the region. Growing up in those walls was the second greatest blessing of my life — only second to my continued blessing of life.

After 15 years and 125 foster children, my mom decided it was time to hang it up. Then a phone call came in that changed all our lives forever.

A baby girl with Tetralogy of Fallot was in need of a home that could care for her. It was the one phone call my mom had been waiting for all those years —the baby had the same heart defect I had. There was no hesitation in her acceptance.

However, the baby was much sicker than I ever was and had other issues that complicated her care. The doctors warned my mom it was most certainly respite care, but she didn’t waiver.

Baby Michelle came and was beautiful and happy but extremely fragile. We all had experience raising very sick children, but trying to keep a baby from not crying or straining to keep her going each day was a whole different experience.

One night she stopped breathing as her heart stopped, and my father revived her on our dining room table before the paramedics could arrive. Months later, she was getting prepared for open-heart surgery, but she went into arrest before she ever made it into surgery. This time, nothing could be done. She became one of the many CHD angels who are so dearly missed.

I remember getting the call from the hospital as my mom and sister were giving her a final bath and dressing her one last time. I shut down. CHD isn’t fair. It doesn’t discriminate. “Congenital heart defects are the most common birth defects,” according to the  Children’s Heart Foundation.

But I never knew it would take the life of my sister. At 20 years old, I had no idea how to comprehend a death that was so close to me in so many ways. It was a harsh reminder of my own mortality.

I was in college, which was a six-hour drive away from home, and I convinced myself (and somehow my family) that I couldn’t make it home for the funeral. Seems pretty cowardly as I look back on it. But I don’t know that I could have held it together for any part of it — even the drive home. Every ounce of me knows I should have been there now, but I can’t change what should have been.

As I was driving the other day, I looked over to the empty passenger seat and saw baby Michelle. She was a bubbly teenager, looking out the window. It was the first time I had ever seen her as anything more than that fragile baby girl. My heart broke as I thought of what could have been and all the years and memories that were never a possibility for her and my family.

A promise is a promise, and it was kept even when it was known it would hurt the most. It’s a promise that’s still being kept 28 years later.

As I saw that teenage girl riding in my car with me, I made a promise to her and to God to be the best CHD advocate and medical professional I can with them at my back. I hope I can improve the quality of lives of adults with congenital heart defects who have beaten the odds and survived past their 18th birthday and to honor all those who have lost the fight, including baby Michelle.

I learned what it means to keep your promises, even when it seems easier to run the other way. I will never run the other way. I can promise you that.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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What You Won't Notice About My and My Son's Illnesses When We Walk Down the Street

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When me and my son walk down the street, what will you see?

A young mother with her toddler, both look well, healthy even.

It shows looks can be deceiving. It shows no one really truly knows what people have to have to cope with every day.

Being ill does not necessarily mean you look it. You may not look tired, you may have color to your skin, you may just look “normal.”

woman hugging toddler son who has head on her shoulder

Both myself and my son both battle unseen illnesses every day.

Elijah was diagnosed with Tetralogy of Fallot (TOF) and a neonatal stroke at birth, he had a full TOF repair done via open heart surgery at six months old.

Although he was treated, he will live with this condition for the rest of his life. He looks like an energetic little toddler, running about and causing mischief, learning new words every day.

What people don’t see is the incision mark running down his chest and the chest drain stitches that have left their mark even now, 15 months post-surgery.

The panic that when he becomes ill that it may result in another hospital stay.

That his development has to be monitored so closely due to the bleed on his brain at birth. We need to check all milestones are met at the correct time.

Sometimes it is not just a case of giving him some Calpol to make him feel better, sometimes it is a case of getting him checked out, his oxygen sats measured and making sure his chest is clear, with a normal heart rate.

It just goes to show that little boy running around, with a slight sun tan to his arms and color to his cheeks? He has a congenital heart defect. Something unless you knew, you would never have even guessed.

When you look at me, what do you see? That I am mother to a toddler, trying to keep up with him and running after him as many parents of toddlers do.

What you don’t see is that for the last three days I have been too tired to leave the house.

That I have had to try and take naps throughout the day just to make it to mid-afternoon.

That I have lost weight without even trying, that now my skin has flared up into acne again.

I am losing hair, that I cannot keep awake past 10 p.m., and haven’t eaten a meal in days as I have had no appetite.

My hormones are all over the place, and I frequently have violent mood swings.

I remain in a constant emotional state.

That sometimes although I am so tired, I cannot sleep for days on end as my joints hurt and I am so cold.

The reason for this? I too have an illness you cannot see, one that effects so many aspects of my life, my daily day. I have a thyroid disease.

One that requires to me to take tablets every day for the rest of my life.

It can affect me physically, mentally and can affect my relationships with friends and family.

It can affect my chance to have another baby, and may have implications for me conceiving or on the baby’s health.

I have another hidden illness one up until only a few months ago I was shared to admit. To say out loud. I have post-traumatic stress disorder. I have a mental illness. One I battle with even now, over a whole year post-surgery.

However, you will not see this. You will just see a mom and a toddler walking down the road. Looking like any other mom and son.

But we are not.

These illnesses and conditions can be disguised, as we do not look “ill,” but they can make you depressed, they can affect the quality of your life. They require constant medication.

Sometimes it is hard to admit you’re ill when you do not look it. But you will most certainly feel it, whether you’re at home, at work or walking down the street with your son.

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To the Man With a Visible Disability Who Commented on My Invisible Disease

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Living with congenital heart disease, a nearly invisible chronic disease, I had to learn at a young age when I needed to explain to someone I had something they couldn’t see. It was always uncomfortable, but there were many physical limitations I needed to make people aware of that separated me from my peers. I never thought of the difficulties of living with something so invisible until I was given one of the biggest gifts of my life by the most compassionate of men.

While in college I was working at a car stereo shop and in came a man in a wheelchair. He needed help with a lot of everyday tasks. He drove his wheelchair several miles a day to his passion — his nonprofit to help others with disabilities. As he drove in that day he was smiling ear to ear, the same smile he would have every time he came in those doors. He was in need of some lighting for his wheelchair so he could navigate the roads home in the dark of the night. I worked with him for several months until his wheelchair flooded the road with light so he could safely pilot his way to his life’s work.

We connected over the course of those months. I thought of him often.

One day he came in and I was gone — I was 180 miles away getting news that my countdown for my next heart surgery was beginning. When I saw him next he asked about where I was, and of course I told him. He was compassionately inquisitive, and I shared  the highlights of my story in the time we had.

What he said next forever changed my life.

“Wow, Joe, that must be really hard to walk around carrying that with you and nobody knows.”

I was speechless and holding back my tears. I cannot even remember my response; it must have been some jumbled mess.

After he left, what he said began to sink in, although it took weeks to fully comprehend. Even though I have had an invisible disease my whole life, I had never thought of the challenges that face someone with the same invisibility. I have never hidden my disease; I would gladly tell anyone my story if they ask or when the situation is suitable. But what if they don’t ask and I feel the need to tell them? How do I tell my story then? That has always been really hard, and in that’s what he was saying to me in that moment of empathy.

He gave me definition to my own struggles and the insight to see the struggles of so many who live with all things invisible, including mental illness and grief. I had never been one to judge someone else, but I would not say I was conscious someone may have something so significant below the surface. I have now learned to try to be fully aware of that in all interactions I have in my life.

You never know what someone else’s struggles are, sometimes even your own. I learned that about myself in a moment of true compassion.

Thank you for the gift!

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Check out our Submit a Story page for more about our submission guidelines.

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The Honest Answer I've Started Giving to People Who Ask How I'm Feeling

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How often do you get the question, “How are you feeling?”

When living with a chronic illness it feels like a daily occurrence, and it can be a difficult question to answer. My first unspoken response is always, “Compared to when?” because compared to my sickest, I feel great; compared to yesterday, I feel terrible; and however I feel today doesn’t necessarily have any bearing on how I may feel tomorrow.

Once a friend of mine who has the same congenital heart defect I have asked me how I was feeling. I said I was feeling good. I had just been discharged from the hospital and was having ventricular tachycardia, which required me to wear a defibrillator vest, which meant I could no longer drive and my open heart surgery was now urgent. She laughed, because she knew that in our world we say “good” when most people would be in pure breakdown mode. But it was an honest answer.

When you live with a chronic illness, your definition of “good” is totally different from those who are healthy. Those who have good health often have a hard time comprehending what it means that we will never be better and probably be sicker in the future, because they get sick and get better. I don’t blame them. It is hard for anyone to have empathy for someone whom you cannot relate to at some level. But if we don’t tell  them the truth they most certainly will never know.

Sometimes saying “good,” “great” or “better” gives the person asking some false sense of comfort and does nothing to express how you really feel. Sometimes that is just fine and we need not share more. But what about the times when those responses don’t even come close to how we feel and the person asking is someone we want to be truthful with? How do you initiate the proper response under those conditions? It is natural to use a one-word answer which has led me to learn a new response — “Sh*tty!”

It comes out naturally, it is not complicated, and there is usually little angst in saying it because it is so simple. At a minimum I am telling the truth. Uttering those words have helped me initiate some of the most difficult conversations of my life. It usually garners the full attention of whoever asked, and sometimes nothing more needs to be said — just know I feel sh*tty today.

We cannot always hide behind being “good,” “great” or “better.” I believe sometimes we need to be truthful. For me I find truth in those two syllables, more truth often than any other two syllables I could think of. Maybe you have a word that rolls off your tongue easier. If so, find it! Don’t always hide behind the optimistic one-word responses. Instead I recommend finding the simple true response that you really need to say. Speak the truth to those that you trust. I believe it can open communication, cultivate empathy and take away some of the isolation we can feel when living with a chronic illness.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.
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To the Teen on the Indiana Jones Ride Who Recently Had a Transplant — Thank You

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On Monday, my dad drove my older sister, three of our “heart friends” and myself up to California for a short trip to Disneyland. We met up with our other heart friends for dinner in Downtown Disney that same night. The restaurant thankfully had let me make a reservation a few days before our trip and we were able to put enough tables together to get 16 people all together to eat. It was an amazing weekend filled with a lot of laughter and amazing memories.

I want to talk about an amazing family I met while exiting the Indiana Jones ride. Some of us got early entrance into the park and after everyone went on Space Mountain, we grabbed a quick bite for breakfast and headed over to Indiana Jones. Before all of this, I had spotted a young girl (either a teenager or young adult like myself) wearing a medical mask as well as a backpack that had tubing attached to it. At first glance I thought maybe it was cannulas for oxygen, but I later found out it was a type of permanent IV.

We all climbed into the ride once there, and I forgot about her for the time being. It’s hard to focus on anything in particular when you’re being thrown around in a vehicle and almost losing the bow you’re wearing in your hair. It came back to me, though, when we all climbed out of the car at the exit and I turned around to make sure we had got everyone in our party when I saw her and her family climbing out of the car behind us. For a split second I wondered if I should ask if she’s had a transplant. I know I most certainly don’t mind people asking me about my health, scar or why I use a wheelchair at times. But I also know not everyone is as comfortable or open about their medical journeys and it can be a situation they prefer to keep private.

I made a quick decision, though, and decided to just go for it. What’s the worst that could happen? I started off with, “Excuse me, I hope you don’t mind me asking, but did you have a transplant?” Turns out the teenage girl had a bone marrow transplant not too long ago. After I introduced myself, her mom asked me if I had had one, gesturing to the scar on my chest. I explained that I had four open heart surgeries but will someday need a heart-lung transplant.

At this point one of my friends came over to us to see what was going on. I introduced my friend, explaining to the family that we all had congenital heart defects and met at a camp about 17 years ago. We get together as much as we can, knowing that when you have medical issues like us, it helps to have friends who “get it.” The mom agreed and added that they had been waiting for 10 months in the hospital for the transplant, and the people you meet in the hospital and in the medical community during your journey become like a second family to you. Nodding, I told her, “I know. I wanted to reach out because I know how hard this all can be. Had to let you know there are people out there who get it and you’re not alone.” Her eyes filled with tears and she thanked me for reaching out, telling me how much it meant to her and that she hoped I got what I needed for my health.

After leaving the ride, I regretted not thanking her as well. Within this past year and a half, most of my experiences with transplants have been so negative. I was denied by four transplant centers, during the evaluations I learned about all the terrifying complications that come with transplants, seen families and patients wait for months and months on end with false alarms concerning getting organs, and then finally getting the organs but then they failed within weeks and months — winding back up on the list in the hospital.

But seeing this young girl going to Disneyland for the first time since being listed for transplant reminded me of the hope that can come with transplants. It was a bittersweet reminder for me that transplant would have let me do so many amazing wonderful things that I’ve never gotten to do before, or have had to stop doing… but I was so grateful for the reminder of how wonderful and hopeful the process can be and I was beyond elated for this young woman who had gotten her second chance at life.

So to the young woman and her family I met in the exit at Indiana Jones in Disneyland, thank you for the wonderful and much-needed reminder of how beautiful transplant can be. I want you to know I am ecstatic for you and all you’ll finally get to do now with this gift of life.

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

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When I Reaffirmed My Vow With My Husband Who Has a Heart Defect

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I love and am loved by my husband who has a congenital heart defect. This has led to other physical complications and will ultimately result in a heart and lung transplant.

To say this has been a journey is quite an understatement. It has been exhilarating, terrifying, exciting, sad, happy and every emotion in between. For a while we lived with the fact that he would pass one day, most likely sooner than many. That was a horrible place to wake up to every day. Right now, we’re living in the day-to-day joys of what “mundane” we can find in our life.

I chose to spend my life with him through sickness and in health, but I had no idea what that meant at the time. We all come to points in our lives where we have to make a choice. I had to look at those vows and look at him and tell him — with full conviction — I still meant what I said 10 years ago. I really meant through sickness and health. I meant it.

This means being in and out of the hospital. This means taking a day off work so I can help care for the baby because he’s too tired. It means understanding that he wants to help, but sometimes he just can’t.

It’s really hard to describe to the general community. I found there are few people who can truly relate. I believe God has brought people into my life who understand my situation. They’re my cheerleaders in the middle of the night when I’m worried he’s retaining water yet again. It meant I had to work full time rather than be the stay-at-home mom I was planning to be because he physically can’t work full time.

It means watching him get let go from jobs because they don’t understand his condition, and he can’t keep up with the work. Watching him wanting to provide for his family while having to accept disability as a form of payment. Raising three young children and showing them that even though they’re scared when Daddy is sick, we believe we have a God we can go to and find joy, peace and true happiness.

That’s what I’ve learned most about this terrifying, exhilarating, exciting adventure. Look for the joy in this life. This world can seem broken and sad and sick, but we can still find joy and true happiness in the rubble.

Here’s what I would tell my loved ones about being a caretaker. I love that I have a man who truly loves me and would give his life for me and my kids. He is a godly man and is raising our children with morals and character. In the end, we have no idea how long any of us will be here. We can live in the fear of death, or we can live vivaciously in the life we have now.

For us, this means hiring a friend to help clean the house so we can spend the evening at Disney World. And eating dinner together as a family at night, talking about our days and when we were little. Letting Grandma and Grandpa take the kids so we can have precious alone time even if it means sitting on the couch laughing at reruns of “The Office.”

Maybe he wasn’t put on this Earth to be an amazing salesman or elite businessman, but he’s leaving a legacy with our three children, which, quite possibly, will become three families in the future. Families who will carry on the legacy their father passed on to them. I want my family to see the strong, courageous, joyful man I have the privilege to love and care for. Till death do us part.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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