Posts Tagged ‘Cardiac Kids’

Special People, Special Moments

December 17, 2009

Check out the newest edition of Patients for a Moment, the blog carnival by and about the folks who aren’t carrying a stethoscope!

As soon as Christmas is over, I’ll turn my full attention to preparing for the Regional Congenital Heart Defect (CHD) Forum sponsored by Broken Hearts of the Big Bend.  The forum is going to be held in Tallahassee, Florida, on February 13, 2010. I’ll get to meet with a group of Cardiac Kids, some Heart Warriors, and most importantly, a lot of Heart Moms and Heart Dads.

Heart Moms and Heart Dads are a special breed of people. Things were going wonderfully, then suddenly a doctor took them aside and said “We think there might be a problem with your child’s heart…” and everything changed. The ground began to crumble under their feet, and all their dreams suddenly became a nightmare. Something is wrong with our baby, and for all anyone knows, it just… happened. Nothing we could have done to stop it or prevent it.

Some families crack under the pressure. Now you have a sick child and a broken family; a double tragedy. And in some families…

… in some families, the parents-to-be come closer together. Mom’s maternal instinct kicks into warp drive; she’s going to protect her child with every weapon she has. She’ll ask questions until the doctor screams for mercy and dispute any advice that doesn’t seem right. The quiet, unassuming woman you married will get in the face of anyone who doesn’t seem to be acting in her child’s best interest. Heart Moms develop iron wills – they will go to the ends of the earth for their child, and if that’s not far enough they’ll tie a rope and drag the earth with them.

A dad’s job is to protect and to care for his family. A Heart Dad realizes that through no fault of his own, he has failed that task. He also realizes that he can’t fix this problem – yes, that is part of his job, but for most of us, precision cardiac surgery is not something we know how to do.

So a Heart Dad accepts the fact that he has to find someone else to do his job for him – and men (especially fathers) don’t do that very well. But Heart Dads put their pride on hold and dedicate themselves to one task: getting their child safely to the help that they need. Maybe it’s not such a “manly” thing to do to ask for help, but they do it. And then our couple learns all about how time moves slowly in a waiting room, how the battle is fought day by day (and sometimes hour by hour) and that sometimes the good guys don’t win.

I love people like that, and I love meeting them. Because as hard as they’ve fought, there is still a seed of doubt in their minds: Will my child make it? What kind of life is he going to have? What’s going to happen to them when I am gone? Most of the Heart Parents I have met are young – in their 30’s, at most. They’re still learning, and things may be OK right now, but they’ll be fighting this battle all their lives.

I don’t claim to be an “inspirational speaker” and I am learning right along with everyone else at the CHD conferences I’ve attended. But maybe I can say something – or just introduce myself as a 43-year-old CHD survivor – and it will all fall into place. With good medical care and a little good fortune, your child can grow up and live a normal life.

I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

Moments like that are awesome.

Advertisements

On the Trail

May 19, 2009

The starting lineup for the 2009 Bolder Boulder is set – nine adults who have had  sixteen major heart operations will be participating. We’ve got nothing to prove: I jokingly say that when I wake up in the morning, I stretch my feet forward and look at my toes. If there is no toe tag… I’m still winning!

I’ve talked a lot about the race, but I’m having a hard time putting into words exactly what this means to me. Certainly it’s going to be a lot of fun – I met a some of the Denver area Adult Congenital Heart Association (ACHA) members while I was in Philadelphia and in Washington, DC; they are good people. And we all have a common story, we’ve all Walked the Difficult Path. When I talk about my heart with these people, they automatically understand. If the air is thinner than I’m ready to deal with and I need to take a break, I don’t have to feel guilty about begging off for a little while. I won’t feel left out, because every one of us has Been There and Done That at one time or another.

I’ve run into several “technical difficulties” getting organized for the trip. My Cardiologist prescribed a little extra Oxygen for me while I was out there, and for a while I thought I was going to have to ship a 60 pound Oxygen Concentrator cross country! The local group was right there with offers to handle things on that end. (I’ve been able to arrange to have it delivered to the hotel, so no hearts or backs were damaged in the making of this trip!) A few weeks ago when my hernia was really giving me a fit, I emailed the local ACHA organizer that I might not be able to come after all. Almost immediately I was told that if I could get there, I’d be loaned a wheelchair and an assistant to push me around. That’s going above and beyond! Thankfully the hernia is quiet and if all goes well, I’ll be able to be on my own two feet. But the offer was greatly appreciated, and as far as I know it still stands. I’m sure I’ve been a pain in the rear end trying to work out the details, but the Denver crew has been patient, and I am so thankful for them.

Like the team that is actually on the course, I’m fortunate enough to be in pretty good health. Other adults with heart defects are not. Heart Moms and Heart Dads look at their Cardiac Kids and wonder what the future will bring. A lot of things have changed since I had my surgeries, I’m hopeful that they will have an easier journey than my parents did. And perhaps one day, with more knowledge and funding, no one will have to walk this path at all.

And that is why we’ll be out there. Because every heart deserves to live a lifetime.

Until we speak again;

Elevator Sprints! (Cardiac Kids Part 2)

August 25, 2008

IF YOU HAVE A PACEMAKER OR ICD, CLICK THIS LINK!

The independent streak that Cardiac Kids have can pop up at the worst possible times. I was at the University of Alabama at Birmingham hospital, in the old Jefferson Tower. And another patient and I had just invented a new sport.

Elevator Sprints!

Elevator Sprints are just too cool. The hard part was getting past the nurses station to the elevators, but once we had, we were ready to go. We’d call both elevators to the floor and then ride down to the ground level. Once there, we’d say “One two three GO!” and jump on the elevator, hit the 16 button, and head for the top floor! The elevator actually seemed to speed up as it climbed, too, and that made this 11 year old boy really happy.

We could get away with this game because this was the late ’70’s, when hospitals were more 9 to 5 (or 9 to 8:30) operations. Things seemed to slow down greatly after the dinner trays were collected, and really shut down after visiting hours ended. Certainly, the hospital was open for business, but if you weren’t in an area where most of the patients were critical, things really did seem to quieten down for the night.

Once we hit the 16th floor, the first one off the elevator won. Thankfully there was never anyone with a cup of hot coffee waiting for the elevator to arrive, because I probably would have run him over.

On about the third night of Elevator Sprints, my elevator slowed to a stop and a doctor got on.

One of my doctors.

My Cardiologist.

I was busted!

Needless to say, he casually mentioned our meeting to my parents the next day. My father sat me down and said “Son, apparently you don’t understand the seriousness of this situation.” I’m lying… I can’t tell you what he really said! He was pretty shocked, because here I was at UAB for Heart Surgery and I’m running up and down the elevators!

I was humiliated, but now it is a funny “Kids, what can you say?” story. Even though I was there for surgery, I didn’t feel bad. Didn’t feel sick in the least. So why was I cooped up in this hospital? The world is leaving me behind, you only get to be 11 once!

Heart Moms and Dads, this is something that you may need to have a talk with your Cardiac Kid about. We’re not normal… but we’re so adaptable, we adjust easily. It’s not long before we’re used to our “new normal” and like all children, we want to push the envelope. See just how far we can go. And sometimes, that’s not a such a bright idea.

Cardiac Kids need to learn to think before we do. Yes, it looks like fun, and it probably is fun, but it might be in our best interests to NOT try to jump the bike one foot further than Earl can. Or – inditing myself again – ride the roller coaster at the beachfront amusement park. But it is a balancing act: you do need to teach us to watch out for ourselves more than the average kid does, don’t hover. We need to be independent, and to learn where our limits are all on our own. It’s a fine line, protecting us from ourselves without making us so timid that we spend the rest of our lives saying “I can’t.” We’re trusting you to teach us to be cautious, but to also do what we can and enjoy our lives.

And you probably won’t know how good a job you’ve done. There will times when sanity rules and we do the right thing for ourselves, and you know nothing about it. We may not even realize it ourselves until years later. That’s just life.

I never ratted on my partner in crime, and he got away scot-free! I really need to look him up; I haven’t been on an Elevator Sprint since then!