Posts Tagged ‘Love’

At the top of the world

June 11, 2010

REMEMBER: Grand Rounds hosted at Adventures of a Funky Heart! on June 15, 2010! Entry Guidelines are HERE.

Paul Cardall felt water on his back as he climbed Mount Olympus just outside of Salt Lake City yesterday. Concerned, he checked his backpack for leaks. Wife Lynnette quickly found the source:

A few yards into Wednesday’s hike, Paul’s commemorative “Celebrate Life” hike T-shirt begins to soak. He checks his backpack for water leaks, but there are none. His wife, Lynnette, touches his back.

“It’s sweat,” she says.

“Sweat,” the professional pianist repeats. “A new thing for me.” – The Salt Lake Tribune

No one thought Paul could do it. Shoot, no one even thought he would be here. Last September Paul Cardall, Husband and Father, was reduced to a shell of a man as his tired overworked heart slowly wound down. Born with Tricuspid Atresia and Transposition of the Great Arteries, his heart defect didn’t care that he was an award-winning musician. It didn’t care that people all over the world were following his story through his blog, Living for Eden. It didn’t care the his wife and young daughter needed him. All it knew was that 1 in 125 people are born with a Congenital Heart Defect. On that day, at that time, and in that place, Paul was the One.

And now it was a race. A game of Beat the Clock with Paul’s heart as the clock. Find a donor heart quickly, get it to the hospital, and our side has a chance. Let the final seconds tick off the clock and – well, no one wanted to think about that. But Paul and Lynnette had sat down and had THE TALK. What happens if…?

The call came – on Christmas Eve! – but that heart had a problem and Paul was left waiting. Then nine months later, another call. This time everything was GO! and the transplant went smoothly. Heart 2.0 even began to beat on its own, not waiting for the electrical jolt that was supposed to start it. Nonplussed, the surgeon zapped it anyway.

Now the race was on again, but this time it was different. Doctors told Paul to expect a two month hospital stay to recover. Paul was out in two weeks.

It was in that hospital that Paul stood and stared at Mt. Olympus and promised that he would climb that mountain. Not one day, not someday, but on June 9. Exactly one year after his brother died, and less than a year after his heart transplant.

His doctors fainted. Well, all but one of them:

Though some of his doctors at Primary Children’s Medical Center had wondered aloud whether Paul could actually make the climb less than a year after the transplant, cardiologist Angela Yetman not only believed he could do it, “she started up the mountain after we did and caught up with us,” he said. – The Deseret News

Someone glanced at their watch when they hit the summit: 1:00 PM. Photographs were taken, a prayer was said, and there were hugs all around. But Paul hadn’t walked the final steps; hadn’t reached the peak. It seems like such a little thing, less than a foot away, but mountain climbers are a pretty insistent bunch. You either reach the peak, or you don’t. There is no almost.

Finally Paul stepped forward and placed his foot on the summit at 1:10 PM… the moment his brother passed.

Paul has a motto, just as I do. He will often say “Let’s Celebrate Life!” That’s your assignment for the weekend – celebrate your life, especially if you have a heart defect. My father grew up in a time when a child born with a Congenital Heart Defect lived a short, painful life. I live in a world where a heart transplant recipient can climb a mountain.

What will the Cardiac Kids of the future see?

LET’S CELEBRATE LIFE!

Overheard

July 2, 2009

Person A: “She says she never noticed my scars.”

Person B: “She noticed. She just realizes that her Knight has had to fight a few dragons along the way.”

Thank you

June 5, 2009

I want so bad to go home and live a ‘normal’ life; a life of ‘normal’ baby ups and downs. Today our hearts broke for our son. He will have to have open heart surgery number two at just six weeks of life. That is something that no one deserves,” Lucas’ parents write on their blog. They thought that things were going well; as far as they knew they were ’rounding third and heading for home. Lucas had come through his operation, made it through Recovery and had just moved into a step-down unit. And then the bottom fell out: More than likely, they are heading back to the Operating Room.

I was chatting with some other Congenital Heart Defect (CHD) Survivors while I was in Colorado, and the subject of our childhoods came up. Even though we came from different backgrounds and our lives have taken us in different directions, we had one thing in common: strong parents. They stood up for us when we couldn’t stand up for ourselves. They sacrificed, so that we could have. They asked one more question, explored one more option, traveled one more mile, all for us.

Our parents dreams of the perfect family with the white picket fence and the dog were blown to bits in that moment when a doctor took them by the arm and said “We need to talk…” They had precious little time to prepare for the journey they would take, but they dug their heels in and stood like a rock when their world crashed down around them.  They have suffered right along with us. And some of them have found the strength to say goodbye.

I’ve been called a hero because I write this blog. I am not comfortable with that; I’m just a grown up country boy. Heart Mom and Heart Dad, if you want to see a real hero, go look in a mirror.

Until next time;

The Talk

April 17, 2009

Men, recall the dating adventures of your life. Specifically those few weeks when you were just getting to know her and she was learning about you, when things were still awkward and both of you were on pins and needles trying not to do The Wrong Thing. Because The Wrong Thing would be just the event to make the other person shout AHHHH! before running off into the night, never to be seen again. We’ve all been there.

When I was in high school and college I used to conceal my heart problem until what I felt was “the right moment”. It was hard to judge exactly when the right moment was – things had be be past the Just Talking stage, but not quite to the Dating stage. Usually when we were seeing movies and going out to dinner as “Just Friends.” Then I would tell her about my heart problems.

Why? Because I had fallen into the trap of thinking that since I wasn’t perfect, I wasn’t worthy. What could I offer anyone? And unfortunately there have been a couple of young ladies caught in that trap, also… as soon as we talked about my heart, the relationship ended.

This trap comes from the belief that anything less than perfection is a failure, and is unacceptable.  But the trap isn’t true… I do not know how or when it started, but somehow we have been convinced that the lesser citizens among us aren’t as important, or as useful. Their hopes and dreams don’t count.

For proof that this isn’t true, look no further than Susan Boyle. Susan recently appeared on Britain’s Got Talent, the show that spawned American Idol. Susan’s 47, slightly overweight, inarticulate, and not very attractive. The audience was laughing at her as she told the judges that she wanted to be a professional singer, and even the judges rolled their eyes and looked at her with dismay. Then the music started and Susan blew the walls down! (Click HERE to see Susan rock the house!)

Today, my heart comes up fairly quickly. As soon as the young lady asks what I do and I say I advocate for CHD Survivors, she’ll usually ask how I got involved with that. The answer is obvious.

If you are the parent of a Cardiac Kid, don’t let being unlucky in love get him or her down. You can’t walk away from life; you have to take it all, the ups and the downs. I often wonder how many turndowns were really because of my health, and how many I credited to my heart because my imagination was running away with me. Remind your Cardiac Kid that even though he/she may be physically weak, they’ve already been through a lot more than any of their classmates. They are strong in ways that most people can’t imagine, and they just have to keep being strong. You can’t win if you aren’t in the game.


The Hero we Forget About

November 1, 2008

First, a couple of announcements: There is going to be a Q and A session for Adults with Congenital Heart Defects held in New York City on November 11, 2008 at 6:00 PM. Dr. Ralph Mosca is the speaker, and the subject is “Surgery and Adult Congenital Heart Disease”. The event will be held at the New York Presbyterian Hospital/Columbia University Medical Center Milstein Building, 7th Floor – Rm 213 (Reemstma Conference Room), 177 Fort Washington Avenue, New York, NY 10032. You need to RSVP – email NYCAreaACHA@achaheart.org if you intend to come (You can also e-mail questions for Dr. Mosca to this address) and they ask that everyone attending please bring a snack to share, if at all possible.

The CHD Blog has more on Lobby Day 2009, the National Congenital Heart Coalition, and the SEVEN groups that have united to form the Coalition. Is your CHD Support group part of the Coalition? No? Why Not? The CHD Blog also gives you a link to follow if you want to attend Lobby Day.

And some very sad late news: Senator Dick Durbin’s daughter has passed away. She was 40 years old and born with a Congenital Heart Defect. But for some good news, Katie is hanging in there and improving!

I keep telling you how special Heart Moms are, it is true! Every word of it! People like Katie’s mom and Colby’s mom expected to be out teaching their kids the things that a growing child needs to know (don’t touch a hot stove, don’t drink that, and don’t try to give the cat a bath!) not sitting in a hospital somewhere. But life isn’t fair. And to their credit, they hide the tears and keep on keepin’ on. Not many people realize that a heart defect breaks three hearts… the Cardiac Kid’s, Mom’s… and especially Dad’s.

They are rarely mentioned, but Heart Dads suffer, too. The man is supposed to be the Protector and Defender of his family. But how do you fight something like this? The answers are maddeningly vague: “As best you can”, and “One day at a time.” That’s almost not an answer. And we’re supposed to have all the answers. Breaking down in tears and shouting “I just don’t know what to DO!” isn’t an acceptable response. So we bite it back, and it eats at us.

And there is no such thing as a normal activity with a Cardiac Kid. Katie’s dad has written of his simple desire to kick a ball with his daughter. And you have to trust other people with your child’s life. For a guy, that’s especially hard to do. Take my child away and cut on him or her? No way. That’s why the men seem to be having the most difficult time in the Surgical Waiting Rooms. Fixing the problem is our job, real men don’t leave the work to someone else.

No. A real man understands that as much as he wants to correct this situation himself and make everything all better, he can’t do it. He might be able to fix the broken heart that occurs after that first crush goes sour, but this is beyond him. So he does the only thing he can: Find someone who knows how to make things better.

If the problem can’t be fixed, at least give us a chance to fight another day. Because we will go to the wall for our family.