Posts Tagged ‘parents’

Welcome to the club

June 4, 2010

I read a lot of medical blogs every day looking for information to pass along to Funky Heart! readers, and when I found  StorytellERdoc he quickly became one of my favorites. There is no doubt about it, the doc can write. Today’s entry deals with children who have a Chronic Illness and their parents. StorytellERdoc has been there himself:

One of our amazing ER nurses, Kathy, the mother of a son with cystic fibrosis, said it best when Cole was first diagnosed. “Welcome to the ‘Parents-Of-A-Sick-Child Club’,” she whispered in my ear while hugging me. “It’s a club that no parent would ever want to belong to,” she continued, “but one that will change your life forever.”

No doubt about that. You wanted the 2 kids and a picket fence that is the dream of every parent. What you got was a full-scale war. You’ll have to learn skills that have absolutely nothing to do with your chosen career, take a crash course in Medicine, learn a foreign language (yes, “Doctor-talk” is a foreign language!) and unless you are lucky enough to live close to a major medical facility, you’ll have to become your own travel agent. But somehow you manage to dig your heels in and push back; you fight for what is yours and you hold on. That’s all you can do.

In the ER, when I meet the parents of an ill child, especially a prolonged, chronic illness, my utmost respect and compassion flows outward in tidal waves. I can only imagine the heartbreak and the struggles they have known in dealing with the fight for their child’s life, trying to obtain just a wee bit of normalcy.

It is a war that won’t be covered on the evening news, and can barely be put into words. Only a chosen few – members of The Club – understand. StorytellERdoc is a member of the club. Go, and read his account of one family’s  battle.

Just as a thought…

June 10, 2009

If 90% or more of all children undergoing surgery to correct a Congenital Heart Defect survive to adulthood (Generally accepted percentage for the United States); and there are currently more adult CHD Survivors (1,000,000) than there are children (800,000)…. then why do a lot of this blog’s comments and my email imply that parents receive very little advice about raising a Cardiac Kid?


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;

Slow down

March 17, 2009

Don’t panic!

That’s the best advice I can give you. When in the middle of a crisis, do not run in circles as if your hair is on fire. Slow down, calm down, take a deep breath, and sort through the situation.

“Slow is smooth, and smooth is fast,” the old saying goes. If you have a large job that has to be done fairly rapidly, the best way to tackle it is to cut it into as many small parts as possible. First I have to do A. Then B. Then C. If C doesn’t work, then I have to choose between D and E. So, what would make me choose one option over another? You think it out and plan it before you have to do it. So when you’re in a crisis, the clock is running and C isn’t working,  you’re already thinking ahead, deciding what comes next. And because you’ve taken the time to think it through and make a plan, the decision is almost made for you.

As the parent of an unborn child with a heart defect, you have an advantage. Hopefully the defect was detected via Ultrasound or Sonogram. The doctors have had a good look and they have a plan. When the child is born, we do this, then we do that. Talk to the parents of some of the older CHD survivors, they never had that luxury. One moment they were the happy parents of a newborn, and a moment later the roller coaster ride began.

So don’t panic. Grab your doctor and don’t let go until you know the plan as well as he does. Have the information you need to make a critical decision quickly.

If the defect was not expected, then everyone is forced to rely on experience. You don’t have any, so you are going to have to rely on the medical staff. Hopefully you and your spouse have had a couple of “What if…?” discussions, so you have a general idea what you want to do. If not, don’t kick yourself – every parent expects things to go wonderfully and may avoid such topics. But have that discussion as soon as possible.

This is not a world that you would choose to be in. But you are here, and you need to learn to deal with it.


October 29, 2008

UPDATE: As of 6:00 PM Eastern, Katie is out of surgery. Click here to go to her blog for more information.

It’s been an interesting day. Even though I’m here in South Carolina, I’ve been following Katie’s surgery, checking her website for updates. Judging from my website stats page, quite a few people are also keeping up with her by clicking through from here to her blog.

The Internet has given a whole new dimension to friendship and concern. In 1967 and 1977, when I was a long way from home having surgery, all my friends and family had no choice but to wait by the phone for updates. In ’67, no one had even thought of a home answering machine, (as far as I know) so you pretty much had to be there or you missed the call. The first time it was just the three of us, but in 1977, my church passed the hat and collected enough money to send my pastor to Alabama to be with us for a few days. He arrived the day before the surgery, stayed for 3 days – they got up enough cash to pay for a hotel room, too – and then he flew home. I didn’t find out until later that someone (and I still don’t know who it was) gave him two rolls of quarters so he could call home with any news. And in those days, you had to find a pay phone. But since hardly anyone had a cell phone (I had never heard of one) there literally WAS one on every corner.

Websites are active 24 hours a day (unless the server goes down, which occasionally happens) and e-mail is almost instantaneous, so we can find out what is going almost as soon as it happens. Sitting in a waiting room waiting on someone to let you know how a surgery is proceeding is a mind numbing kind of loneliness; having friends to share the burden doesn’t seem to make it any easier. When it comes down to it, it’s just you and the clock.

Rodney Dangerfield once said, “I’m having heart surgery; if everything goes right, it will take about four hours. If it goes wrong, it’ll take about thirty minutes.” Rodney was only half joking; you mentally note the time your loved one was taken from you and watch the clock. If you don’t hear anything for a while, you’re relieved: apparently nothing has come up that would alter or cancel the planned procedure. But if they are gone too long (and everyone has a different idea of how long is too long) your worrying again. Something’s up… it’s taking too long. There must be a problem. What’s going on? It’s a natural reaction.

You have family and friends there with you, and those who can’t be there but who call in to check. Hopefully they are doing all that they can do to support you. Your internet friends  – many of them you have never met – are “standing” with you too. Because “alone we can do so little; but together we can do so much.” (Helen Keller)