Inky Binky Bonky

Don't Be Afraid to Ask for a Heart Screening

2011-12-12T16:58:00.000-05:00

Today, I read another story about a high-school athlete who dropped dead during practice from an undiagnosed, undetected congenital heart defect.The 17-year-old was at lacrosse practice. The very sport my high-school-athlete son plays.

I am relieved to know now that my son Martin has a healthy heart. Earlier this year, I finally asked our pediatrician to screen him for congenital heart disease (CHD). I had let the question nag me since 2005, when my younger son William was diagnosed with Scimitar Syndrome. Martin was screened in March, after I read news stories about five student athletes who collapsed and died while playing their sport.

I'm so sad for Daniel Valenson's family. They had no way of knowing. The heart defect he had (anomalous left coronary artery from the pulmonary artery) is very rare -- affecting 1 in 50,000 to 1 in 300,000 live births -- and often, the first symptom or sign of trouble is sudden cardiac death.

While Daniel's particular heart defect is very rare, congenital heart defects are not rare. They are frighteningly common, and yet, our children are not routinely screened for them at birth or as a requirement to play organized sports, although there are efforts to change this. In Chicago, for example, privately funded screenings have saved the lives of area athletes.

Congenital heart defects strike an average of 1 in 100 babies. Heart defects are THE MOST COMMON of ALL birth defects. More common than the ones you hear so much about -- and many of which women are routinely screened for during pregnancy -- such as spina bifida, Down syndrome, cleft lip and palate, and abnormal extremities.

Congenital heart disease affects about 35,000 children each year in the United States. Of those, about 3,500 die before their first birthday. Nearly twice as many children die from CHDs in the United States each year as from all forms of childhood cancers combined.

Don't be afraid to ask your pediatrician or family physician for your newborn, infant, toddler, young child or your student athlete to be screened for congenital (or acquired) heart disease.

While any physician may be able to identify a congenital heart defect, the most qualified and specially trained physicians in this area are those who are board-certified in pediatric cardiology. Certification matters!

Congenital heart defects can be found through:

physical examination (hearing a heart murmur)
pulse oximetry screening
echocardiography,
electrocardiography (EKGs)
CT scan
MRI
Chest X-ray

Another startling fact about congenital heart disease: About 10 percent of all CHD cases that are evaluated in adult congenital heart clinics are first diagnosed in adulthood — that means there are adults walking around today who have undiagnosed congenital heart defects.

Screening does not require invasive testing. Diagnosis and treatment saves lives. Now more than ever, people with congenital heart disease are living longer, active, normal lives.

Ask.

Happy Birthday, Mom!

2011-09-06T16:21:00.000-04:00

Happy Birthday to my wonderful, phenomenal mother!

Before I tell you a totally cool story about her early career days, let me tell you why she's my wonderful, phenomenal mother: Because she was there. Always. And she still is. Not just for us kids, but our kids, too.

She was and is a great role model in every way. I wrote about that in "Who's Your Role Model." And this is where I pick up on the career tale ...

So. The story. My mother was one of the first two women in the Leon County Schools to serve as an elementary education administrator. Mom served as an assistant principal in several Leon County elementary schools, including Oak Ridge.

It was all going swimmingly until she and her colleague learned that their male counterparts were making a lot more money than they made! So, the two women confronted the superintendent of schools about equal pay. (Go, Mom!) The conversation went something like this:

The superintendent said, "Well, you don't make as much because I figure you wouldn't be doing the same kinds of things the men would do." (Remember, this would have been in the late 60s.)

My mom replied: "What assignments wouldn't we do? Are you aware that on one occasion I escorted a sheriff's deputy to a classroom so he could take a 5th grader into custody?"

Did I say, "Go, Mom!" yet? Oh, it gets better!

My mother continued: "And are you aware that one of our students was crossing campus with a pistol in his hand and intending to shoot one of our teachers? I stopped him and confiscated his gun, a .38. Now, what is it that we wouldn't do?"

Whoa! That's my mother!

You rocked it then and you rock it now!

Happy Birthday, Mom!

Three Little Words: “There’s a HEART!”

2011-08-08T22:01:00.000-04:00

My favorite job in the world (in addition to being a mom and wife, of course) that pays only in sheer joy is the work I do with BrokenHearts of the Big Bend.

I love my heart families. No, I don’t think you get it: I love my heart families. They may or may not know it, but I would do anything I humanly could for any of them. I worry about them, pray for them, cheer when they hit milestones, cry when things go wrong, and rejoice in the miracles that they all are. I love. my. heart. families.

I especially love days like today, when I hear those three precious words. Even after three years, I never get tired of hearing them … “There’s a heart!” My own heart jumps and I get goose bumps. Because someone I adore is about to start a new life with a new heart.

I stop immediately and pray – for the person receiving the heart and for their family; for the family who made the difficult but incredibly generous decision to donate their loved ones’ organs; and for the team of physicians, nurses, social workers and other transplant-team members who, on a moment’s notice, step into action to make the transplant possible, to make it happen like clockwork.

I’ve been blessed to hear those three little words for Jori, Mykala, Cat, Timmy, Wyatt, Ramsey. I long to hear those words for Rachel, Chloe and Carmen.

Today, though, right now, I rejoice. Today, there’s a heart! There is a heart for Emily. Tomorrow, Emily starts a new life with her new heart.

Rejoice evermore. – 1 Thessalonians 5:1

Emily receives her gift of life tonight, a new heart.

Happy Heart Day, William! Five Years!

2011-06-29T22:08:00.000-04:00

Five years ago today, we gave our son over to the pediatric heart team at Shands Children's Hospital so they could fix his heart. Some days it feels like it was just yesterday, other days like it was a lifetime ago.

But one thing that never wavers or changes is our gratitude. Five years later, we are still so grateful to our pediatrician Dr. Dean Dalrymple and local pediatric radiologist Dr. Charles Williams, who finally diagnosed William at age 1, after he'd been so sick for a year. Grateful to Dr. Jay Fricker for taking care of William's heart until Shands hired a pediatric heart surgeon. Deeply grateful to that pediatric heart surgeon -- Dr. Mark Bleiweis -- for choosing Shands and for Shands choosing him. Because of these doctors, William is a happy, healthy, soon-to-be second grader who doesn't have a care in the world.


William, immediately after surgery to repair his partial anomalous pulmonary venous return, June 29, 2006.

William with big brother Martin, the day after surgery.
Uncomfortable, but loved listening to his bunny's heart.

Sitting up in a chair the day after surgery.
Not a happy camper, but when his brother
asked, "Does it hurt?,"
William replied, "No, not much."

Hanging out in bed on Day 2, still feeling sore, still hooked
up to chest tubes that drained blood from his chest cavity.

Back in the chair again on Day 3. This
time he gives his Grandma a smile.

Day 4 and feeling good. Getting ready
to go home! Yes, surgery was on a
Thursday. We were HOME by the next
Monday! That's how William and
Dr. Bleiweis roll.

"Seriously, Dr. Bleiweis. I am SO ready to go home!"


Saying so long to his favorite PICU Nurse Josh Campbell.

Since surgery, we have yearly checkups. We have echos.

We have EKGs.

Sometimes, we have CT scans of our chest
and visit our surgeon so he can see how much |
we've grown and how awesome we're doing
(doctors love to see that with all their patients!)

We even go to Gainesville to walk in the AHA
Heart Walk with our pediatric cardiologist
and pediatric nurse. We love Shands and AHA!

But mostly, we simply revel in every day. Feeling blessed that everything is going so well, and that William is happy and healthy. If you'd like to read more about William's journey, go to www.carepages.com; his CarePage name is MasterWilliam.

Happy 5th Heart Day, William!

We love you so, so much!

Parenting a Heart Kid

2011-06-23T10:14:00.008-04:00

This is not William's X-ray, but it is an image
of someone with Scimitar Syndrome.

First of all, it turned out to be little more than a fragile, superficial vessel that popped and bled. William’s fine and we, his parents, are thankful to be nothing more than overly tired after a late night in urgent care.

But when your asthmatic, heart kid starts coughing up bright red blood after a coughing episode, you try hard not to work yourself into a panic. That’s what happened last night.

William was minding his own business, taking a shower, and abruptly started coughing. OK. Not unexpected: he has mild/moderate, chronic asthma, and it’s been triggered and exacerbated lately by a lingering respiratory virus, brutally hot weather and intermittent exposure to the smoke from Florida’s wildfires.

When my husband went to check on him, though, he was caught off guard by the bright-red, kind-of-big splotches of blood coming out when William coughed. And it kept coming. Husband went bonkers, scared witless. I tried hard to be just a “regular” parent – ah, he probably just popped a vessel somewhere, or maybe it’s really just a nosebleed traveling down his throat. But I’ll call Capital Health Plan Urgent Care; we’ll see what they want to do.

When I talked to the nurse, I told him my 7-year-old son was taking a shower and started coughing and then there was blood. The nurse didn’t seem overly concerned and asked if my son had been sick.

“He’s had a cough on and off for a few weeks. Dr. Jones saw him a week ago Friday and his lungs sounded a little junky, but when we went to see his pediatric pulmonologist that Monday at Shands, she said he sounded really good,” I told him casually.

I was not going to panic. Just because he’s a heart kid does not mean it’s a big-deal serious thing. I was going to play my “he’s just a regular kid” card, even if I died a little inside doing it.

“Oh. Um, why does your son see a pulmonologist at Shands?,” the nurse inquired.

“He has chronic, but mild asthma, and he has scimitar syndrome. He’s really fine, though. He’s been very healthy this year,” I explained.

“What was the name of the syndrome again?,” the nurse asked?

“Scimitar syndrome. It’s part of his partial anomalous pulmonary venous return, a heart defect,” I said.

“Oh. Has he ever coughed up blood before?,” the nurse asked.

“Years ago when he was a baby and had pneumonia, and then I think it happened once after he had his heart repaired several years ago,” I answered.

“Oh! How far do you live from our clinic?,” he asked.

“About 10 minutes or less,” I answered. “If I have to choose between going to an emergency room or waiting to see our pediatrician in the morning, I will choose to wait and see our pediatrician. I think he’s fine.”

The nurse put me on hold. A minute later, he came back and said, “We’ll wait. Please come now.”

And we did. We saw Dr. Henry Gunter, whom we’ve seen before, and he’s a wonderful, kind and patient physician. He had read William’s chart. He knew William had asthma and he knew he had a “great vein anomaly.”

Dr. Gunter checked William’s ears, eyes, nose and throat. His throat looked red, now raw, but like it had been painted red. Dr. Gunter decided William probably had popped some small vessel in his throat, but just to be sure, he sent William for a chest X-ray.

Aside from the wire that has popped open at the base of William’s sternum, everything looked fine. And even the wire isn’t a big deal. Dr. Gunter was gracious and glad it was nothing more than a popped vessel. So were we!

I give myself credit for appearing to be just a calm, typical parent last night. But I won’t deny that the heart mom’s little voice kept whispering in my ear, “He’s probably fine, but he’s a heart kid with respiratory issues. You can just never really know. The fact is, you might be home in an hour or you might be admitting him to the hospital. You just never know.”

That’s what it’s like. That’s how it feels when you’re the parent of a child with a congenital heart defect, or any other chronic illness. You work hard every day to be just another parent; but there’s always a little piece of you somewhere feeling a twinge of panic when something out-of-the-ordinary occurs.

Because it’s true, you really never know for absolute sure.

Happy Merry Mother's Day!

2011-05-07T20:47:00.000-04:00

If you need to find me on Sunday, I'll be hanging out here all day ...

Oh, wait! Not THERE! Gross!
That's what it looked like six months ago!

I mean, HERE!

Ahhhh, now THAT'S more like it!

Thank you to my own personal Pool Boy, The Hubs!

Happy Merry Mother's Day to All of You!

Bathtubs Make Good Beds Sometimes

2011-04-28T15:05:00.000-04:00

I came across this book today on Twitter: Go the F@#k to Sleep, a thought we parents have all had at one time or another about our children, who often, will not. go. to. sleep.

Don't lie. You know you've thought it!

And author Adam Mansbach knows it. "When 'Goodnight Moon' just isn't cutting it ... one dad and novelist has written a bedtime story to warm the hearts of sleep-deprived parents everywhere: 'Go the F@#k to Sleep.' "

Children and sleep. Oh, the tales I could tell. I'm a co-sleeping parent, from way back before co-sleeping was such a hip thing to do. I did it because I was desperate and co-sleeping accomplished my goal of getting (barely) enough sleep!

Seriously. There's a reason my husband nicknamed our first son, "Draculita." If I tried keeping Martin awake during the day, he was overtired and too crabby for sleep at bedtime. If I let him sleep during the day, he was too wide awake to go to bed at a decent time -- say, sometime before 3 a.m. Oh, I tried letting him cry it out. Once. And for weeks afterward, I couldn't round the corner into the next room without him screaming over my perceived disappearance.

For everyone's sanity, I stopped exclusively breastfeeding and let my husband start getting up with the baby during the night and bottle-feeding. Martin didn't care he was getting a bottle. Breastmilk, formula, he didn't care as long as it filled his belly. But he sure cared about (not) going to sleep in his crib. He wouldn't have it.

The crying and screaming were relentless, no matter how hard my husband tried. I'd turn off the monitor, close the bedroom door, stick plugs in my ears and shove my head under my pillow. But there was no escaping the miserable cries of a baby who wanted to play at 2 a.m., but was instead being rocked to sleep.

I confess. I thought it: "Oh, child. Please. 'Go the F@#k to Sleep.' "

I couldn't take it anymore. I grabbed a big, fluffy bed comforter, a blanket and an armful of pillows. I threw them in the bathtub in our master bathroom, flipped on the ceiling fan, pushed the door shut and curled up in a ball. Just the humming of the fan and my nice, new, white, porcelain-coated cocoon. Ahhh, peace.

It's the only way I survived those early months!

Several years later, a close friend had a baby girl. My friend looovvvvves her sleep. Even as an adult, she sneaks in an afternoon nap whenever she can. (And let me tell you, we are all happier people when she gets a nap.) I knew after first baby arrived, she was gonna be hurtin' for sleep. And it was not going to be pretty.

I'll never forget one of our first conversations after her baby arrived:

Me: "Hey! How're you feeling? How's that whole sleep thing going?!"
Her: "I'm soooo tired. Oh, my God. You know how I am about my sleep. And she. won't. sleep. She just cries. I'm going out of my mind!"
Me: (chuckling under my breath) "You'll be OK. Sleep when she sleeps. I know it's not your philosophy, but if you get desperate, try letting her sleep with you. "
Her (obviously not listening to me): "Is she ever going to sleep through the night? This is killing me. Oh, my God. You were so calm with Martin when he was a baby. I'm a terrible mother, Karen. Some nights, I swear, I would never do it, I love her so much, but oh, my God, some nights, I just want to throw her out the window! How did you ever not want to throw Martin out the window?!"
Me: "I did! But, hello, I didn't go around telling people that!"
Her: Huge, audible sigh of relief.
Me: "You know. The bathtub makes a very good bed sometimes."

Grasshoppers and Horses

2011-04-21T22:37:00.021-04:00

Yum! Grasshoppers and Horses are a sweet combo!

Grasshopper cookies make me think ... horses.

Growing up, I rode other people's horses through leasing agreements -- Copy Cat, Goose, Mini Dude, and my favorite, Bandit. After Bandit was shipped back to her owners in Atlanta, I suddenly found myself 15, horseless and seriously heartbroken.

That's when mom spilled the beans -- I was getting my own horse! On May 22, 1980, as a belated birthday gift, my mother gave me a beautiful, gray mare named Irish. How perfect was that -- my birthday falls on St. Patrick's Day?! It was kismet. She was rotten when I brought her to Coventry Farms, but over the first year, we learned a lot about and grew to trust each other. We were a great team.

My beautiful, gray mare, Irish. Her show
name was Shades of Gray, so named
after a song by The Monkees.

I rode competitively and loved it! Not just the riding part, but the hanging out with Mom at horse shows part, too. She would rise before dawn (and let me tell you, my mother is not a morning person!) to braid my horse's mane and tail, fighting arthritic hands. And every horse show, she would pack our favorite cookies -- Keebler's Grasshoppers, thin, wafery, mint-chocolate goodness.

Thank you, Mom, for all those wonderful weekends of braided manes, shiny riding boots, nervously holding on to my horse by the reins, anxiously watching me jump fences when surely you wanted nothing more than to hide your eyes! (I realize this now that I'm a mom.)

It all happened 30 years ago, but often feels like yesterday. Whenever I see, smell or eat Grasshopper cookies, I think about my horse shows, remember Irish, and feel very grateful not only for the outlay of money it took to support my habit, but especially for the investment of time, love, and enthusiasm my mother gave during a crucial part of my life. My days at the barn are the best, best days of my adolescence.

First show at Killearn Stables, Walk Trot, first place.
Eventually won champion for the day. The pony is Copy Cat.

Mini Dude looking perky circa 1977 at the Springtime
Tallahassee Horse Show at the Leon County Fairgrounds.


Goose! Crazy-looking, dappled, Appaloosa mare. Sweet girl. We won championship that day in our short-stirrup classes.

My Lady Bandit hanging out having
fun on the weekend.

Bandit looking AWESOME after a show
at Brookwood in Thomasville. It was
an off day, but still a lot of fun.

My Son is a Teenage Athlete

2011-03-18T13:28:00.000-04:00

Martin at one of his lacrosse games. That's my boy!

I’m not an alarmist and I don’t over-dramatize situations, but learning about the sudden cardiac deaths of four teenage athletes has had me a little on edge. My son Martin is a teenage athlete and his brother William has a congenital heart defect (CHD).

Ever since William’s diagnosis of scimitar syndrome on March 10, 2005, the question of whether Martin’s heart is as healthy as it has always seemed has been stuck in the back of my mind. I’ve left it there the past six years because I’m neither alarmist nor paranoid.

Well. Until I followed and read the recent stories about Wes Leonard, 16; Matthew Hammerdorfer, 17; Javaris Brinkley, 16; and hearing a personal story about 17-year-old Sarah Landauer of Gainesville.

I know the debates about young athletes and heart screenings. I know there are no guarantees with anything. Any one of us could be hit by a bus on our way home tonight.

I’ve read the checklist of signs, symptoms and histories for student athletes. That we can check no to most of them does little to assuage my anxiety. But a full-on physical check-up will ease my fears about the risk of sudden cardiac death.

Martin plays an aggressive, high-intensity sport and he has a brother with a CHD. Martin practices lacrosse with his junior-varsity team 15 hours a week, and he plays one to two games per week, and as the starting right attack, he plays 98 percent of the time in each game. I worry. And it's not unfounded worry.

So, on March 10, 2011, six years to the day of William’s CHD diagnosis, our pediatric nurse gave us the dates for Martin’s EKG and echocardiogram. Martin will have his annual physical plus an EKG on today, March 18, William’s due date. Martin’s echocardiogram is scheduled for March 22, William’s birthday. (I’m really not superstitious, but I hate it when dates and numbers fall freakishly together like that.)

I don’t expect anything but to find out everything is normal with Martin and he gets the whole-hearted all-clear to play sports as much and as intensely as he wants.

But right now, he’s teenage athlete who plays vigorous sports. He has a brother with a congenital heart defect. And within a two-week period recently, four teenage athletes have collapsed playing sports. It’s time for Martin to get that EKG and echocardiogram.

I Raise Awareness for My Son!

2011-02-04T13:48:00.000-05:00

Monday is the first day of Congenital Heart Defect Awareness Week. And as the infamous SpongeBob Squarepants would say, "I'm ready. I'm ready. I'm ready."

Rather than repeat everything I just wrote in a post on a blog I moderate, I'm going to send you over to the Broken Hearts blog, Straight from Our Hearts.

Thank you, Ramsey Brown, for agreeing to be interviewed today for a TV segment. Thank you, Kim Rooks, for repeating your message for support -- for the first time ever, our local office of the American Heart Association is donating drinks for our Broken Hearts Open House next Tuesday.

Thank you to all of our fantastic heart families who make Broken Hearts the awesome organization that it is. You all serve as ambassadors and we are so thankful for you.

And thank you to my beautiful son, William, whose heart we love and wouldn't have any other way.

It’s All Up to You

2010-12-20T14:43:00.004-05:00

I was reading my friend Becky Gjendem’s blog, Deep Muck Big Rake, the other day and she had written a review of Eat Pray Love by Elizabeth Gilbert. In her post, Becky quotes others and talks about how difficult, how painful – but how necessary – self-reflection is.

In November, my friend Rachel Lawley wrote "Seeing Clearly Now," in her blog, Wonderfully Ironic, about taking a look at herself and holding herself accountable.

A similar subject just came up this week in Dan Rockwell’s blog, Leadership Freak. In a recent post, “People are Frustrating?,” Dan wrote: “Personal happiness and personal freedom begin when we stop excusing ourselves and begin taking personal responsibility.”

All of these references to reflection, accountability and responsibility remind me of a passage in a book I received a lifetime ago from my friend, Renee. At the time, I was going through a seriously rough patch in life (well, rough till that point in my life, anyway). Divorce, job loss, death of a beloved grandparent. It was a sad, ugly chapter in my life.

So, for all those reasons and a variety of others, I started my inward gaze in my 20s (that was 20 years ago, if you're wondering). Looking inward should be a lifelong process, so I try to sit down with myself frequently. As with anything, I'm better at it some days than others.

But even as hard as self-reflection, self-acceptance and self-responsibility are, they also are incredibly liberating. On especially tough days of self-reflection, I always come back to this passage from Paul Williams’ book, Das Energi, that long-ago gift from my friend, Renee.

It’s all up to you.
You are completely responsible for your life.
You are the creator.
It’s an awesome burden and a great freedom.

It’s all up to you.
When you take responsibility for one life, you assume
responsibility for all life.
If you fail to take responsibility for your life, you
do not exist.
Tough, Isn’t it?

When you finally realize how really tough it is, when
you finally accept life, when you finally find there is
no way out but self-awareness and the incredible pain and
loneliness and responsibility it brings, then and only
then will you begin to be alive, and begin to know the
joy of freedom.

Amen, Mr. Williams. The incredible pain fades. The joy of freedom lasts forever.

Not for Me to Reason Why

2010-12-16T11:57:00.004-05:00

It was Dec. 16, 2004, and I was driving to work, looking at the impeccably landscaped golf course near my family’s home, watching mist rise from the ponds. As I admired the beautiful morning, I thanked God for it, and for letting me keep my infant son, William.

The day before, we learned that he did not have cystic fibrosis, a degenerative, debilitating disease that would have killed him young, or required a double-lung transplant – neither of which I had envisioned for our dark-haired, big-eyed boy. I was so relieved my older son Martin would have his brother throughout his life, and that my husband and I would not have to bury our child.

I thanked God again for sparing my family – my own and my siblings’ – the tragedies I had seen befall many of my friends’ families. Terminal illnesses, suicides, tragic accidents. I wondered out loud how all of that worked. How one family experiences typical life events, while another family suffers tragedy, sometimes many heartbreaks. How two people can suffer the same illness, disease, or injury, and one lives while the other dies.

Four days later, I learned there is no rhyme or reason. On Dec. 20, tragedy befell my family. Jonathan – my sister’s and brother-in-law’s only child, my mother’s grandson, my nephew – died in a single-car crash on Tallahassee’s dark, dangerous Deerlake Road. He was only 16.

I still thank God. But I’ve never again wondered, silently or out loud, how any of this works; there is no sensible or reasonable explanation. I’ve never looked at the world the same way since. I do try even more to live each day with gratitude, reverence and humility.

Who’s Your Role Model?

2010-12-09T16:32:00.002-05:00

I was reading a blog post the other day that my friend Niki Pocock wrote, “My Role Models Aren’t Your Role Models,” about Generation Y role models. In it, she asks, “Who was/is your childhood role model?”

It got me thinking.

But first. I’m not Generation Y. I was born in 1965, on the cusp of Baby Boomer and Generation X. My three siblings are solidly part of the Baby Boomer generation (born in 1955, 1958 and 1959), and my parents are Traditionalists. When I read descriptions of Boomers, GenX and GenY, I know I’m a tiny bit Boomer, a whole lot GenX, and somehow, more than a little bit GenY. That’s my generational filter.

Hangin' on to Mom, circa 1968.

That said, as cliché as this will sound: My mother was and still is my No. 1 Role Model.

Traditionalist women mostly grew up, got married, and raised their families (and there is nothing wrong with that!). But my mom earned bachelor’s and master’s degrees in home economics, worked summers as a waitress at the Tick Tock Inn on Rehoboth Beach, DE, and landed a teaching job after she finished college.

No small feat when you know that my mom’s family (parents and two older brothers) were hit hard by the Great Depression and, when my mother was 5, her father died from complications of pneumonia. Her mother remarried a few years later to great man, and the only grandfather (maternal and paternal sides) my siblings and I ever knew. But her early years were not easy. Still, she managed. And managed well.

Mom started her career in education teaching middle school. She and Dad married in 1952, moved to Tallahassee in 1953, and had their first child (my sister) in 1955. They had their second and third children, both boys, in 1958 and 1959. (Yeah, they’re 360 days apart!)

After staying home on-and-off while us kids were young, mom would return to her career as a teacher and school administrator. She was assistant principal for the curriculum at two elementary schools and a middle school. In between, she oversaw elementary-school curriculum for our school district.

Her career was a mix of Traditional and Generation X. She served the same employer – the Leon County Schools – for almost 40 years, like a good Traditionalist. But like a good GenXer would do, she mixed it up working in a variety of positions – teacher, vice principal, district administrator, and mixed it up more by working at both the elementary-school and middle-school levels.

Mom, summer 2010.

Over her 40-year career, mom (and Dad, a little … he was very Traditional in the sense that he didn’t participate consistently in child-rearing and didn’t participate at all in housework) not only succeeded as a career woman, she was also a wonderful, wise and present mother. There and present at my brothers’ sports events and band concerts, at my sister’s choir performances, at my swim meets and horse shows. All the while, mom kept a robust circle of girlfriends. She is still there and present for us.

Oh. And? Mom always volunteered (and still does at 83). A lot. The Junior Woman's Club, Faith Presbyterian Church, Brehon Institute of Family Services, Alpha Delta Kappa, Faith Preschool, and I’m sure a dozen other organizations I can’t even remember.

OK. She didn’t do it all by herself, which makes her even wiser and more wonderful in my eyes. I’ve always known no mother (or father, for that matter) can or should do it all by herself. Whether her support is from a paid helper, a husband, the kids, or that robust circle of girlfriends, mothers (and fathers) need support to succeed and thrive.

Mom had help from a part-time housekeeper/sort-of nanny, Bessie, who cared for us after school and helped mom keep up with things like laundry, cleaning and cooking. (Mom readily admits to this day that she has no idea how mothers survive today because Bessie was her lifesaver.) As we got older, we kids chipped in, too. My sister (who is 10 years older) watched after me a lot. I cleaned the house and cooked more often as I got older. One brother (who later became a trained chef) cooked a lot of dinners. And the other brother drove me around a lot to piano and riding lessons.

My mom blazed a trail as one of her generation’s first career mothers. And she was great at it – her career and being our mother. My siblings and I are lucky, grateful kids.

We Will Miss You, Steve

2010-11-29T12:30:00.005-05:00

“Because your whole world can change in 24 hours.” – The Paper (1994)

That’s Steve Catoe’s quote from his latest blog post, “24 Hours at Johns Hopkins.” I know that for Steve’s family, the past 24 hours have changed their whole world.

It is with a very heavy heart that I share with you that Steve died sometime between the late-night hours of Nov. 28 and early morning hours of Nov. 29. He was at his computer, doing what he does best, championing survivors and writing about congenital heart defects (CHD).

I’d like to think he left us in the wee hours of Nov. 29, the 66^th anniversary of the Blalock-Taussig Shunt, which Steve has been writing about over the past two weeks.

“We’re thinking positive thoughts,” his cousin Denise Baldwin told me this morning. “That he’s not in any pain and that he has a whole heart now.”

Just 11 days ago, Steve wrote a post called “Run the Race.” It’s an analogy of his life, living with CHD. He writes about the stumbles and falls he had throughout his life with tricuspid atresia. In true form, Steve talks about fighting the good fight, never giving up and crossing the finish line still standing.

If Steve was tapping away at his keyboard when he passed away, I think he got what he hoped for – he crossed the finish line still standing. Doing what he loved best, doing what he did best. Telling a great story and teaching us what it means to live, no matter what our struggles might be. He made a huge impact on the CHD community, speaking at several events and being there online for more than 400 followers each on Twitter and his blog, Adventures of a Funky Heart, and more than 800 friends on Facebook. He did fight the good fight for so many of us.

Steve was one of the very first people I “met” online when I signed up for Twitter in February 2009. I immediately recognized his CHD (tricuspid atresia), as it is the same heart defect as my friend and Broken Hearts of the Big Bend heart kid, Eliza, had. When Eliza endured her own battles, Steve took time to keep his readers updated on her status and ask for prayers for her. Later, he was a champion for another of our heart kids, McKenzie, who lost her fight to neonatal Marfan syndrome earlier this year.

In February 2010, Steve flew to Tallahassee, Fla., to attend and speak at Broken Hearts’ Regional Forum on Congenital Heart Disease. I got to meet Steve, and also his cousin Denise, who is the one who called me this morning to tell me about Steve’s passing.

At the Forum, Steve — a masterful storyteller with an amazing story to share — talked about his life and his parents and their courage and determination to give their son the very best care they could find.

I feel so fortunate and blessed to have known Steve and to call him my friend. We e-mailed each other often, talking about our blogs, the latest goings-ons in the online CHD community, and life in general. It was through conversations with Steve that I realized that Broken Hearts would be more effective and be of more benefit to those families we could touch in person.

I’ll miss Steve’s advice, his points of view on congenital heart issues, his storytelling, and his quirky sense of humor. He was a part of my everyday life. I already miss him and I wish I’d had a chance to say goodbye. Although knowing Steve, he prefers it this way.

When I got Denise’s call this morning, I was — am still — shocked. I knew Steve had been struggling with the ever-delicate hemodynamic balance that many CHD survivors cope with.

In Steve’s case, he was working with his cardiologist to adjust the diuretic he took for his congestive heart failure. One of the possible side effects of the drug is gout; and Steve recently had been fighting gout. They took him off the diuretic and his gout improved, but he knew his congestive heart failure was worsening because his ankles swelled, he had a constant cough and felt, in general, rundown and tired.

Denise said, at this point, they believe his heart had been working too hard lately, and it gave out. “But, he has his right ventricle now. His heart is complete,” Denise said, continuing to stay positive (which Steve would surely insist we do).

Although Steve may physically have had only half a heart, spiritually his heart has always been whole. I believe for Steve what I believe for my Dad. Just as my Dad is up there hanging out with all of the ancestors he researched and wrote about, I believe Steve is in Heaven with all the CHD survivors he championed and wrote about, and he’s telling all of them how much we love them and miss them here on Earth.

A few weeks ago, Steve and I were talking (e-mailing) about his upcoming Funky Heart posts. He was planning to crank it up a notch or two. And he did. Just last Friday, Steve wrote one of his most powerful entries about working toward a cure for congenital heart defects.

I know he’s up there talking with his fellow CHD angels, telling them how his readers better keep fighting the fight from sea to shining sea. So, for Steve, let’s keep fighting the fight.

Keeping Steve's family in our hearts and prayers. Arrangements are being made in Bethune, S.C., where Steve lived. I will try to post information when it becomes available.

Thankful … and Wanting

2010-11-24T10:31:00.001-05:00

Mom

Growing up, holidays were magical. My mother made them that way. “I Believe” has always been her motto. Snowmen (even in Florida), Santa Claus, flying reindeer … she made it all seem possible and real.Today, I muster up all the “I Believe” I can and try to make the holidays magical for my kids. I want that for them. I want that for myself.

I am thankful my mother is here to share Thanksgiving. I love having one more Thanksgiving with her. She is 83 now, and I know there are not as many Thanksgivings ahead for us with her, as we have had with her in the past. I wish my father were still here to meet and know his youngest grandchild, my son, William George. They would delight in each other’s company.

I am thankful my sister Becky and brother-in-law Doug have joined us again these past few years for our Thanksgiving meal. I wish so much that their son Jonathan were here with us. He was 16 when he died on Dec. 20, 2004.


Thanksgiving 2002 From left, kids in front: Lauren, Jonathan, Martin. From left, back row: Lee, Mom, Becky, Me, Joaquin.

Thanksgiving 2004 was the last holiday my sister and brother-in-law had with him. None of us knew there would be far more Thanksgivings ahead without him, than all the ones we had shared with him in the past.

Loss makes love, thankfulness, family and holidays bittersweet. They make me aware of not only my family’s grief, but the mourning of others, too. As the holidays arrive, I think of not only my sweet sister, but all parents and families who are grieving losses.

May we all find peace and comfort throughout the holidays, and maybe, muster up a little magical “I Believe.”

Shadowing My Son's Heart Surgeon

2010-11-18T17:32:00.000-05:00

That Friday in September, for sure, goes down as one of my most amazing days ever.

I shadowed a doctor who is arguably the best pediatric heart surgeon in the southeast United States, and one of the best in the country. Dr. Mark Bleiweis is the director of the University of Florida Congenital Heart Center in Gainesville.

When I asked Dr. Bleiweis over the summer if I could follow him around at work some time, I assumed I would observe him making rounds in the pediatric intensive care unit at Shands Children’s Hospital in Gainesville. I figured I would sit in on conferences and consultations he had with families whose children were having, would be having, or just had open-heart surgery to repair their congenital heart defects. I guessed that I would sit and watch while he handled administrative work. I was right. I did all those things.

I did not think I would step into his operating room.

But I did.

I stood in the very operating room my son had been in four years earlier, about to observe the very surgeon who repaired my child’s heart. At first, it was overwhelming.

For at least an hour, I stood there, kind of numb, thinking: I’m here. I’m in the operating room. I am about to observe open-heart surgery on a baby. I am about to see what my son went through when he was 2 years old, after he left my arms that morning on Thursday, June 29, 2006.

I took deep breaths and stayed focused on being a writer, taking in as much as I could. I focused on being an advocate, learning more about what happens after we heart parents give our children over to the doctors and nurses who promise to take care of them, repair their hearts, and return them whole. I focused on not fainting from the sheer awesomeness of it all.

For more than six hours, I sat, stood, paced, stretched, watched, listened and absorbed everything I could going on around me while Dr. Bleiweis repaired the swollen, failing heart of a months-old baby.

Born with a complex, life-threatening heart defect called complete atrioventricular canal defect, the baby did not have the typical four chambers and four valves that a normal heart has. He had one large chamber and one valve.

This infant’s heart was working so hard to do its job pumping blood, it was more than twice the size it should have been. Without this surgery, he would die.

The baby’s heart defect was so obvious that during the pre-surgery ultrasound of his heart, even my untrained eye could see there were essential chambers and valves missing.

I saw Dr. Bleiweis delicately cut away the heart’s protective sac and expose the child’s beating heart. He placed the sac in a solution that makes the flimsy tissue firm and durable; it’s what he would use to make patches to cover the holes in the heart. The team attached tubes and clamps that led from the baby to the heart-lung bypass machine, which circulates a patient’s blood while the heart is stopped.

The perfusionist (the person who controls the bypass machine) administered a special mix of drugs called cardioplegic solution to make the baby’s heart slowly stop beating. The perfusionist drained the heart of its blood, and the heart shrank. Throughout the operation, Dr. Bleiweis would ask the perfusionist to fill and drain the heart. It was astounding.

I took turns with medical and nursing students and the anesthesiologist to stand on a stool at the head of the operating table.

I gazed over surgical drapes and looked straight down, less than a foot away, into the infant’s open chest as Dr. Bleiweis, using high-magnification lenses, sewed the tiniest stitches into the baby’s imperfect heart.

During the four-plus-hour operation, Dr. Bleiweis meticulously patched the holes between the baby’s upper chambers (the atria) and the lower chambers (the ventricles), forming a wall between left-side and right-side chambers. He created two functioning valves – a tricuspid valve and a mitral valve.

His work was so exacting, so intricate and so complete that as I watched the post-surgery ultrasound of the heart, I could clearly see the wall in the center of the heart and the two valves that Dr. Bleiweis created for the baby. The baby’s heart would never be normal, but now it would work as efficiently as it ever could. It was extraordinary.

The science and precision weren’t the only remarkable, memorable aspects of watching this elite team of surgeon, nurses, anesthesiologists and perfusionists.

On this day, Dr. Bleiweis – as the surgeon and center director – was clearly the leader in the operating room. His requests, directives and commands were clear, direct, exact and instructive. His team might not have always liked what they heard, particularly if he was correcting them, but his criticism was constructive and designed to make his team that much better during the very next operation and every operation after that.

Dr. Bleiweis, who can operate on the grape-size heart of a newborn baby who’s no bigger than a water bottle, could easily be arrogant or condescending. And yet, he is consistently professional and gracious – to his team, his staff and, especially, to his heart families.

Two months after my shadowing, I’m still absorbing everything I saw that day. I’m still assimilating, organizing and categorizing my observations and conversations. But here are thoughts that have stuck with me:

I am amazed and struck that a pediatric heart surgeon must map out – sometimes in a matter of days and other times in a matter of minutes – the best surgical option for a child whose heart is complicatedly misconstructed.
There is no room for mediocrity in pediatric heart care – not in pre-operatory procedures, during an operation, or in post-operative care. Pediatric heart teams persistently reach for excellence. Every single day.
In the operating room, everyone must work cohesively. They must anticipate what the person next to them will need next, do next, ask for next. They must foresee what their patient will do next, will need next. And they must be there, ready. If there are personality conflicts, hard feelings, or bad attitudes, they’re not perceptible. Everyone in the room works harmoniously, willingly, gladly and always with one goal in mind – the care and comfort of the patient.
Dr. Bleiweis and his team sweat not just the small stuff, but the minutiae, every hour of every day. And I, along with hundreds of other heart families every year, am very grateful that they do.
I’m inspired that parents can and do entrust their child’s life to the hands of a surgeon – most often, a person they’ve never met before – who promises to repair their child’s misassembled heart. I am even more moved that there are people willing to accept that mammoth responsibility as humbly as Dr. Bleiweis and his team do.
I am utterly, wholly and completely awed that this is what this team does: they fix babies’ hearts. They save babies’ lives. Every. day.

William Scores His First, Long-Awaited Soccer Trophy

2010-11-13T13:54:00.004-05:00

Since William was 3, he has begged for his brother to give him one of
his dozen, prized soccer trophies. We, of course, have told William
when he plays soccer when he's older, he'll earn his own soccer trophy.
He just had to be patient. Today was the day he earned his first trophy!

Dear Coaches Stephen and Brian:

Thank you so much for being great coaches. It’s been such a positive start to William’s soccer “career.” Not every volunteer coach gets the right mix of skill-building, fun and positive reinforcement, but you both got it right all season.

So you know just what a wonderful milestone this soccer season has been for our family …

Letting William run free and wild on the field, and letting him decide when he needs to take a break, has been a huge step for us. William was born with a heart defect. When he was 2 years old, his heart was repaired through open-heart surgery at Shands Children's Hospital.

William has always had the all-clear to play whatever sports he likes, but as worried parents who weren't sure what a "heart kid" could do, we bite our nails – and have had to learn to bite our tongues – when William plays sports. We have to remind ourselves that he really is just a regular kid.

Watching William in his first practice and in his first game were sweet, sweet milestones. Because there were times, when William was a baby, that we weren’t sure he would make it at all, never mind be able to run around on a soccer field, passing the ball to his teammates and scoring goals. I've never seen a kid smile so much running up and down a soccer field. William has had a blast, and Joaquin, Martin and I have totally enjoyed watching him play.

Thank you both for helping make William’s first soccer season such a memorable one. We are very grateful.

Karen, Joaquin and Martin

What's in Your Refrigerator?!

2010-07-19T13:05:00.005-04:00

I was just reading a Tweet a friend of mine sent out this morning about office refrigerators. @Healthy_Heather -- aka Wellness Without Pity -- wrote: "I'm glad to see more homemade lunch in the office fridge, but beware the hidden ew-factor! http://bit.ly/9z5DLO"

Funny she wrote that today -- shortly after I spent a few minutes this morning in the office kitchen dumping out the likes of three fuzzy fruit salads, a bag of overly juicy bean sprouts, and a couple of long-forgotten sandwiches.

I mean, seriously. I bring my lunch to work almost every day. I wouldn't store my lunch next to a litter box, so it freaks me out sometimes to put my fresh eats alongside the accidental science experiments.

During a stint with a former employer, I spent an entire morning at work restoring health to the communal refrigerator. It was beyond disgusting. Once I was done, I e-mailed my co-workers (slightly modified to protect the innocent ... and the guilty!):

Hello,

Among the perks of working here is the benefit of working with someone whose penchant for cleanliness persistently lies just this side of mental disease. Ah, yes, laugh, and then go look at the kitchen.

Not only are all the eating utensils neatly stored in the drawer now, but I soaked, washed and dried them all over again because as I put them away the first time, I noticed that most of the spoons and forks were covered with a disgusting film of grease, soap and soggy, bloated food chunks. Mmm, tasty treats.

I also wiped down the microwave since whoever scorched their frozen lunch never bothered to clean up the dried-up glob of blackened, cheesy goo they left behind. That was really yummy, too.

And I cleaned out the refrigerator. Yogurt that expired last October. Cream cheese gone bad since January. Hazelnut creamer that chunked up in early March. Green bacon. Fuzzy pineapple chunks. That was truly scrumptious.

But it was potential media attention that made me dump out the fridge's contents -- I was really concerned the Discovery Health Channel would show up next week, ready to film its next segment of "Diagnosis: Unknown."

PLEASE NOTE: There are two containers of -- gee, I hesitate to call it food -- something that resembles rice and another that might once have been soup. At 3 p.m., if they haven't been claimed, they're going into the garbage can, along with the bag of Tex-Mex scraps on the floor next to the garbage can.

Oh, and speaking of the garbage can ... I even washed the slime and spooge off the container's lid.

The freezer's contents are fairly safe for now, but just to be sure, you might want to go ahead and label anything you own in there. One never knows when the "must clean" synapses in my diseased brain might fire again.

Enjoy the kitchen. And now that it's been given the once-over twice, do everyone a favor -- please do your part in keeping it from becoming another haven for mold and and food-borne disease.

Gracias,
KTC

At home, I border on obsessive about my refrigerator, freezer and pantry. If you are a food item and you are a couple of days past your expiration date, well then: Food, Meet Garbage.

I'll never get why co-workers think it's OK to leave their food in the office refrigerator until it stinks up the place. Lucky for them, I guess, they've got me.

A Life Unfinished

2010-07-17T23:08:00.000-04:00

Jonathan Frederick Barch

July 18, 1988 – Dec. 20, 2004

Come to me in my dreams, and then
By day I shall be well again!
For then the night will more than pay
The hopeless longing of the day.
~ Matthew Arnold

Just before waking one morning recently, I had the most vivid and real dream, where the people (sometimes pets) in my dream are there, visiting me through my dream.

I should clarify: the people who visit me are no longer with us. Over the years, through my dreams, I have visited with Nama, my father’s mother, who died 1987; my father, who died in 2001; my friend Lynn Smithson, who died in 2003; and my nephew, Jonathan, who was 16 when he died in a car crash on Dec. 20, 2004.

This particular morning, it was Jonathan who came to visit. He has been in my dreams many times before, but always off in the shadows, at the edges. Not there, yet there.

That morning, though, he was there. Standing in front of me. Head full of dark curly hair. Striking blue eyes. Whole, healthy, smiling. I got to talk to him. I told him how much I loved hanging out with him when he was a little kid, watching him play at the beach at Grandma's Airstream. I told him how I wished I’d seen him more often as he got older. How I wished I’d seen him play hockey and lacrosse.

I told him how much I missed him, and how I wish so, so much, every day, that he were still here with us. In my dream that time, I got to do something I almost never get to do in my dreams with people who come to see me. I gave Jonathan a hug – a tight, never-let-you-go kind of hug that I could feel in my dream. He hugged me back. I know I must have smiled in my sleep.

Just as I was telling Jonathan again how much I love him and miss him, I could hear my son’s voice whispering to me in my sleep … waking me from the sweetest dream I’ve ever had.

On this, what would have been your 22nd birthday, I remember this dream again, Jonathan, and smile. Thank you.

The Gulf of Mexico is Supposed to be Forever

2010-07-06T16:57:00.059-04:00

As a native and lifelong resident of North Florida, I love the Gulf of Mexico. Thanks to my mother and her love of the water (from the shore) and my father and his love of the outdoors and fishing (in the water), our family of four children spent many weekends and summers along Florida's panhandle beaches.We skipped the touristy areas and went straight to the natural settings and state parks.

From Destin (before it was such a popular destination) and Panama City (St. Andrew State Park), to Mexico Beach and Cape San Blas (St. Joseph State Park), to St. George Island and Carabelle, to Wilson Beach (now-deserted cottages) and Alligator Point (when there was still a sandy beach and you could see your feet under water).

Mom would watch us kids and Dad would either fish in the surf or he would (and I'm not even kidding) take his green canoe, the Kelpie, out into the bay. (He took it into the surf once, too, and it capsized – anything for a fish or two!) But I digress ...

All I have to do is see the Gulf of Mexico and I'm at peace. I also love to hear it, fish in it, swim, stand and float in it, sun on its beaches, and eat shrimp, crab and fish from its waters. When we drive to the beach, I immediately know we're approaching water because I can smell that beach air. I love walking through fine, warm, white sand.

After my younger son turned 6 in late March, I marked several summer dates so the boys and I could go to the beach and hang out for the day when Joaquin was working. We couldn't wait -- digging in the sand, dodging waves, boogie-boarding, staying late enough to see the sun set and then driving home, the boys dozing in the back seat, sleepy and worn out from the sun and saltwater.

The photo (on the left) of the boys has been my phone-screen background since I took it over a year ago. I took it during our rainy but completely wonderful 2009 Memorial Day weekend getaway on Panama City Beach. Who knew then that the least of our worries this summer would be riptides?

I've grown up in the same town where I was born and I accepted a long time ago that even though I'm still here, I can never go back to many childhood hangouts ... I miss my mother's and my favorite store to shop for clothes, Rheinauer's. I can't go to the Ice Cream Palace at the Northwood Mall with my friend Jeanette and order the biggest banana split on the menu. My friend Lora and I can't wander the woods and meadows in our neighborhood "cow pasture." My brother Bob and I can't run the basement halls in the old Capital Press Corps offices, or grab a snack with my Dad at the snack bar -- the "Stand 'n Barf," as he called it.

Those places are gone. They have been either torn down or rebuilt into something else. I expected that to happen eventually. Stores, buildings and vacant land go through developments and redevelopments.

But the Gulf of Mexico is supposed to last forever.

The oil disaster breaks my heart. And every day, it just gets worse. Today, oil and tar balls were seen in Lake Pontchartrain, Louisiana.

I wish I could tell you I've been out there skimming the Gulf waters for tar balls, building habitats for the sea life on the run. I wish I could say that even though I wouldn't go in the water, I'm still going to the coast and enjoying the sand and spending money in our coastal towns. But if I said those things, I’d be lying.

I won’t take my kids to the beach. I won't let them swim in it. (I explain it to friends like this: "If someone pooped in the deep end of your pool, would you still swim in the shallow end?") I especially don’t want to risk exposing my younger one to air pollutants. His lungs already behave like those of a much-older person, thanks to asthma and a congenital heart defect, scimitar syndrome.

I haven’t turned my back on the Gulf of Mexico, yet I feel like a traitor, a fair-weather friend, an unreliable parent, a pitiful ally. The Gulf has always been there when I wanted to spend time with it. Now it needs me and all I can do is pray.

I know the water still looks beautiful in many places, but the fact is, there's oil in the water, even in places where you might not actually see it. Even worse, perhaps, there are toxic dispersants in the waters. Sea life is moving toward shallow waters because their deeper-water habitats are polluted. Wildlife and sea life are coated in oil. I can't even bring myself to eat anything from the Gulf; I know tourism and state agencies keep deeming Florida's seafood safe, but I'm not taking chances.

I’ve never missed a place so much. I’ve never felt so much hate for a corporation as I feel toward BP. I don’t worry as much as about the economic havoc as I do the earthly devastation. I don’t worry as much as about today’s human inhabitants as I do future populations – populations that include my boys and their families, and likely, their families.

I am grateful to those who are out there skimming water for tar balls and oil, bathing, cleaning and releasing our poisoned wildlife, tracking and studying migratory birds (some of which are endangered species).

I pray every day that our Gulf of Mexico will somehow, some way, some day, miraculously pull through. If I can’t take my children to the beach, I at least want to take my grandchildren and great-grandchildren there, and tell them about the days when the Gulf was flooded with oil ... and how it recovered.

Learn more: http://emergency.cdc.gov/gulfoilspill2010/.

Always Grateful

2010-06-29T23:58:00.008-04:00

My now 6-year-old son William spent most of the first year of his life sick. Constantly sick. No one seemed to be able to figure out what was wrong. One doctor kept telling us William was sick because he was in daycare.

Finally, just 12 days short of his 1st birthday, William was diagnosed with scimitar syndrome (sometimes called partial anomalous pulmonary venous return). A year after that -- four years ago today -- on June 29, 2006, William's beautiful little heart was repaired at Shands Children's Hospital at the University of Florida.

We are ever, ever grateful to Dr. Mark Bleiweis for his special gift of fixing babies' hearts. We thank God often, still today, for pediatrician Dean Dalrymple and pediatric radiologist Charles Williams for their sense of urgency, curiosity and diligence in getting to the root of William's illnesses. If not for these amazing people, we might still be wondering what was wrong. And we are always thankful for William's pediatric cardiologist, Dr. Jay Fricker, who makes sure William continues to do well.

One of William's biggest supporters and cheerleaders, though, doesn't often get public praise, but he certainly deserves it for his eternal patience, his constant support, his everyday care and never-ending hugs and love. I think God specifically chose Martin as William's big brother because He knew that William would have a rough start in life and that Martin would take extra-special care of William. They have a beautiful brotherly bond, especially for siblings who are nine years apart. They are best Bubbas.

After four years, 14 years, 40 years, we will always pause on this day -- June 29 -- and thank God for His presence in William's and our lives, and for guiding us to the people William needed to be whole and healthy.

Happy Heart Day, William. We love you and are so glad you are here and whole and healthy and happy.

Familiar Song, New Verse: Talk!

2010-05-17T16:37:00.047-04:00

Well. This explains a lot: Florida's doctor discipline system not tough enough, critics say / Most cases dropped, few serious penalties imposed.

It's no secret in Florida that the Department of Health and the Florida Board of Medicine, in particular, are lax in regulating, policing and disciplining Florida's medical profession. Even though I've known this for years, reading this article makes my stomach churn. It makes me angry.

This isn't about a hair salon allowing unlicensed cosmetologists to cut hair in their shop. It's not about whether yacht and ship brokers and salespersons have a license to do business.

This is about physicians appropriately and accurately treating patients, and the State of Florida taking appropriate action when they don't. Treating patients -- people. Our children, our spouses, our parents, our siblings, ourselves.

In my April 8 post, "Medical-Specialty Board Certification: It Matters," I wrote about a doctor who held himself out to be a board-certified pediatric cardiologist. A doctor who misdiagnosed my son twice.

Bob LaMendola's Fort Lauderdale Sun-Sentinel story hits home.

About a year after my son's open-heart surgery, I filed a formal complaint with the Florida Department of Health against that doctor .

I spent two months collecting my son's medical records and writing a summary about how my son was misdiagnosed twice. I explained that the doctor had held himself out as a board-certified pediatric cardiologist and I even included photocopies of the Web site advertisement and a "Yellow Pages" ad showing how he advertised himself as a board-certified pediatric cardiologist.

As a bonus, I pointed out to DOH that it violated its own policies regarding the qualifications of the medical director of the cardiac clinic for Children's Medical Services. DOH's policy stated that the director must be board certified or eligible for board certification in pediatric cardiology. Tallahassee's medical director for CMS' cardiac clinic is neither.

I'm not sure which part of the laws on medical-specialty advertising and Department of Health CMS policy the investigator didn't understand. But it took the Department of Health no more than a few weeks to write me a form letter telling me my complaint was dismissed and the doctor had not violated any state laws. No explanation. Nothing. Just. Dis. Missed.

Since my son's misdiagnoses, I met a young mother whose son also was misdiagnosed twice by this same doctor. Sadly, tragically, her son died of the very congenital heart defects that the doctor told her (twice) that her son did not have. He died suddenly, just three weeks after he was misdiagnosed.

I know I tell these stories a lot. I tell them because they need to be told. Parents need to know.

Physicians are not infallible. But worse, some physicians aren't honest about their credentials or limitations.

We are so quick to openly and publicly pan a restaurant over lousy customer service. We tell our friends all about the hairstylist who left us looking like we went to a pet groomer. We will tweet all day long about how bad the in-air service is on a flight we're on.

But when it comes to telling someone about a bad -- or worse, harmful or life-threatening -- experience with a physician, dentist, nurse, anesthetist, or other health-care professional, so many of us tiptoe around the subject.

Even if Florida dismisses your complaint, you still have every right to talk to people about your experience. Especially if it jeopardized your life or the life of your child, or other loved one.

Bad restaurant service is temporary. Hair grows back. As long as you get safely from point A to point B, who cares if the flight attendant was rude or nice, or if the in-flight food was fabulous or foul?

Physicians, dentists, nurses, anesthetists and other health-care professionals have the potential to improve your life or end it. If your health-care experience was a threat to your well-being or life, tell someone. Tell everyone.

Happy Mother's Day, and Merry Christmas

2010-05-10T17:14:00.008-04:00

Yes, I know Mother's Day was Sunday and today is not Sunday. But I love my brother's Facebook post about our Christmas stockings so much, I begged him to please let me share it here. So, I give you my first guest blog. From my brother, Bob.

Happy Mother's Day, and Merry Christmas

by Bob Thurston

Mother's Day is a good day to talk about Christmas stockings.

Every December 25, I dig into a stocking my mom knitted by hand before my first Christmas. My brother and sisters have one just like it. So do our spouses, kids and grandkids.

My favorite Christmas memory is of waking before dawn with my brother and sisters and plundering our stockings, knowing they held enough treasure to tide us over until breaking light made it safe to nag our parents out of bed to open presents. We rummaged through a king's ransom of knick-knacks and candy that stretched the red, green and white yarn of the stocking to its limit: distorting our knitted names at the top, distending Santa's angora-bearded face at the shin, and bulging the crossed candy canes at the arch.

Only now do I marvel at how it all got in. As a kid, I just dug and delighted, giggled and sighed, pulling out an astonishing assortment of the wondrous, the silly, the sentimental and the practical: candies and tree ornaments; puzzle books and playing cards; Matchbox cars and Army men; jacks and Slinkys; toiletries and school supplies; and a plump Florida orange nestled in the toe.

When we became parents, we learned the how-to. The orange is your anchor, and a magazine or a thin pack of notebook paper, tucked in around the calf, props the stocking open – the better for fitting in the bigger things. When those are all in place, you drop in the doohickeys and the thingamabobs.

Mom's other secret is Dickens: keep the Christmas spirit all year long. Bargain bins, clearance shelves, impulse items at check-out – stocking stuffer nirvana.

Through the years, those stockings have been stuffed and emptied, torn and mended, time after time.

They captivate our children and make children out of us.

And even after we've dug down to that orange in the toe, they overflow with a mother's love.

Happy Mother's Day, Mom. I love you.

When Doctors Fail

2010-05-09T20:39:00.003-04:00

Adventures of a Funky Heart writer Steve Catoe posted a story I sent him over the weekend about a heart mom I know who lost her baby at 40 days old.

Michael should still be here. He would be 2, and this Sunday would have been his third Mother's Day.

One mom who read this post asked if there was anything she could do. There is: Tell every heart parent you meet and know to be sure their child is seen and evaluated by board-certified pediatric heart specialist. Trust your instincts. Ask questions. Expect answers. Don't tolerate ego. Demand to be part of your child's care and treatment. Advocate, advocate, advocate.

When Doctors Fail

Medical-Specialty Board Certification: It Matters

2010-04-08T17:24:00.126-04:00

“Any doctor can deliver a baby, treat cancer, or declare himself a cardiologist. Certification means the doctor had special training in that field and passed an exam to prove knowledge of it.”

Six years ago, I would have said Associated Press writer Marilynn Marchione was exaggerating in her recent article, Doctors face board specialty 'expiration dates'.

Had my son never landed in the hands of a physician who “declared” himself a pediatric cardiologist, I might still think that way. But he did. So I don’t.

In a previous post about my son William’s heart murmur, I mentioned “the eight-month-long road to a correct diagnosis was ill-paved and rife with potholes.”

I’d like to explain now.

At William’s four-month well-baby checkup, his exam revealed The Heart Murmur. The pediatrician (whom we no longer see) referred my son to a specialist -– “a pediatric cardiologist,” the pediatrician said -– to evaluate the murmur.

If only I’d known then, what I know now: verify credentials yourself. You can’t rely on referring physicians. They might not have verified credentials. They might be assuming a specialist is certified. Or, the specialist might be so rooted in the community that everyone assumes he/she is a board-certified specialist.

You also can’t rely on advertising -- even though (in Florida anyway) claiming you’re board certified in an area you are not board certified in is against the law.

If I could do it again, my first stop would have been here, so that my second stop could have been with a real pediatric cardiologist. Despite what the pediatrician said, the local physician who sees pediatric heart patients is not this area’s “only option.”

Knowing what I know now, I'm not at all surprised this physician misdiagnosed my son. Not just once, but twice. This doctor is nothing more than a pediatrician who completed a pediatric cardiology fellowship ... 35 years ago. Since he's not board certified in pediatric cardiology, there's nothing to show he has pursued any continuing medical education (CME) in this area.

And there have been so many advances in CHD diagnosis, research and treatment over the past three-and-half decades, it hardly seems possible he could have stayed relevant without a lot of CME.

Physicians I love and trust implicitly have told me William’s congenital heart defect (Scimitar Syndrome) is not an easy one to diagnose -- implying I should cut the doctor some slack.

But if it's so hard to figure out, I ask them, then please explain how William’s eventual correct diagnosis was made by a mere pediatrician and pediatric radiologist? Neither of them specialize in, or have had concentrated study in pediatric cardiology.

Really, if not a pediatric cardiologist, then who is imminently qualified to diagnose congenital heart defects -- even those that are difficult to diagnose? If you're going to "declare" yourself a pediatric cardiologist, then you'd better well know what you're doing!

After William's diagnosis, we requested a referral to the University of Florida Congenital Heart Center -- one of this area's many options. The physicians there are extremely competent, very compassionate and ... board certified.

About 15 months after William's open-heart surgery, I filed a formal complaint with the Florida Department of Health. The complaint included misdiagnosis of condition and false advertising. However, DOH declared the physician had done nothing wrong. Nothing. Not even falsely advertising himself.

I also e-mailed the American Board of Pediatrics about the physician’s advertisements. Although the ABP can’t tell me what, if any, action it took, I noticed that about six weeks later, the physician no longer held himself out in advertisements as a board-certified pediatric cardiologist.

Marchione writes in her article, “The next time you’re at the doctor’s office, take a peek at those certificates hanging on the wall. Like gallons of milk, some of them are expiring.”

Better yet, make sure from the start they even have certificates.

The American Board of Pediatrics sponsors a campaign called “Certification Matters.”

And let me tell you: It. So. Does.

Spring is Bittersweet

2010-03-20T13:37:00.015-04:00

George Lee Thurston III
Oct. 1, 1925-March 20, 2001

My father was genius-smart, oddball-strange, comedic-funny and present-aloof. After his terminal diagnosis, he stayed genius-smart, oddball-strange and comedic-funny. But finally, thankfully, he became simply present.

Diagnosed in December 1998 with chronic obstructive pulmonary disease, his pulmonologist gave him about two years to live. Always pushing the limits of everything, he lived two years and three months longer.

Dad knew for a long time that chronic lung disease would eventually get him. When he was 19 in 1944, he had a thoracotomy to cure his stubborn tuberculosis. He smoked cigarettes in his 20s and 30s. When he was 70, he had open-heart surgery for quadruple bypass and placement of a mechanical aortic valve.

After his COPD diagnosis, Dad lived slow, but actively until about November 2000, when his real struggles began. At first, his scoliosis stopped him in his tracks. Dad was known for his asymmetrical shoulders and “tilted gait,” both caused by sliced muscles during the thoracotomy. His curved spine was painful. Shortly after Thanksgiving 2000, he parked himself in his recliner and left it only to, well, you know, and go to the doctor. We called hospice. Dad wanted to die at home, with his family, with no extreme interventions.

It’s not all sad and depressing. We knew Dad was dying. And it was a gift. We got what many people don’t get: not only a chance to say goodbye, but a chance to reminisce, recapture and renew our love and compassion for each other.

As he drew nearer to the end of his life, he opened up more and more with each of us, letting us know that while he wasn’t always there while we were growing up, he was here now and he loved us deeply, and he always had.

A month before he died, on Valentine’s Day, I took my opportunity to tell him things I had told him before, but it had been years, and to tell him things I hadn’t said yet. It was a blessing.

It’s only fitting that my father died on the first day of Spring. Because in dying and death, there was also rebirth. Thank you, Dad, for sharing your life during life, and especially for sharing your life in your death.

My Valentine’s Day Letter to My Father

Feb. 14, 2001

Dear Dad,

Your mother taught me a great lesson in life -- don’t wait too long to say what you want to say. So, I’m not going to wait until it’s too late to give you this letter.

I have to tell you how hard it is for me to see how fragile you are. I watch you struggle to do what used to be so easy for you and I think to myself: This is the man who heaved a heavy canoe off his camper, lugged it to a boat ramp and then canoed for several miles down a river. It hurts to see you in such pain. I wish I could make your pain go away.

I watch you struggle with your thoughts and your train of thought. I’ve taken solace in the last couple of years that while your physical health has been failing you, your mind has stayed strong. Your mind has always been your greatest asset. I know you get so frustrated when all your synapses don’t fire properly and I hurt inside to see you struggle.

Since I was 15 and Mom was almost killed in that car accident, I’ve had periodic dreams about her dying. I cannot even tell you how many times I’ve woken up with tears streaming down my face, thinking she was dead. Ever since then, I have known what her death will do to me. It will be a horrible and devastating thing.

I don’t know if it’s been those dreams that have kept me aware of that and unaware of what you’re leaving me will do to me, or if it’s because you’re such an unemotional creature. But it’s only been in the last few months, and especially the last few weeks, that I’ve realized what a horrible and devastating thing it will be when you die. I know you aren’t afraid of it, and that helps some, I suppose, but, still, it will be so awful, Dad, and I wish it never has to happen.

But it’s going to and I can see it won’t be all that terribly long from now. Do you know the worst part about someone dying? After someone dies, you can’t see them anymore. You can’t touch them. You can’t hug them. You can’t smell them. You can talk to them, but they won’t answer you – at least not in the same way as when they’re living.

You know what I like to think, though? I like to think you’ll go wherever it is your father -- and Hopa and all your other ancestors – are, and you’ll get to see them and talk to them and be with them again. I like to think that. I hope it happens for you.

I also like to think that you’ll do what your mother does sometimes -- which is visit me. Martin and I were driving home one afternoon from preschool -- it would have been early this year or maybe sometime last year. Martin started asking me questions about his Great Gramma Nama and all of the sudden, I cannot explain it rationally, but she was there. I mean THERE -- watching, listening, smiling. I absolutely cannot tell you how real and powerful her presence was, but Nama was there in the car, riding home from preschool with us.

I turn a phrase, edit copy, or make a writer go ask more questions, and I know those are talents I inherited from you. I make a pun, tell a joke or do some goofy thing at the office, and I know it’s because I learned it from you. I have you to thank for my quick wit and sometimes-caustic humor.

I smell smoke from a chimney during a walk in my neighborhood, or feel flames off a fire and I remember all the times you took me camping and canoeing and fishing. I bait a hook and cast a line and know you taught me to do those things. I smell coffee brewing or Beanie Weanies steaming or eat a ham-and-mustard sandwich and I think about campground meals and picnic lunches at Lake Hall. I watch the sun come up and remember the time you stopped at Carrabelle Beach -- just to show me the sun rise over the water.

There were a lot of things you didn’t do when I was growing up, but the things you did, you did well and the impressions, obviously, are lasting.

I wish you didn’t have to go. Ever. But I know the day will come. I won’t be ready. Ever. But these are all the things I will like to think.

I love you.

Karen

Scimitar Syndrome: A Discovery Highlight

2010-03-03T15:49:00.005-05:00

If you’d told me in high school that one day, I would read abstracts from the Annals of Thoracic Surgery with the giddy delight of a 5-year-old eating an ice-cream sundae, I would have burst out laughing, and, well, I would not have believed you for even a second.

But here I am (more than two decades later), all excited over an abstract I found online from a 2009 edition of the Annals of Thoracic Surgery. The article is about a multicenter study in Italy of patients with scimitar syndrome.

Scimitar syndrome is a rare variation of partial anomalous pulmonary venous return, a congenital heart defect. And my almost-6-year-old son is one of the 1-3 in 100,000 babies who are born with scimitar syndrome, and one of the 1 in 125 babies born each year in the United States with a congenital heart defect.

I’ve learned a lot about scimitar syndrome since those first months after William’s diagnosis in March 2005. And finding the abstract today was a highlight of my discoveries.

The study included 26 patients. Most of the patients presented like my son, with symptoms including recurrent upper respiratory tract infections and pneumonia. Eighteen of the patients had an intraatrial baffle repair, while eight patients had their scimitar veins moved and re-implanted at the left atrium.

Those were the two repair options William’s brilliant pediatric heart surgeon — Mark Bleiweis at the University of Florida Congenital Heart Center — discussed with us. He said he wouldn’t make a decision about which repair to use until he saw William’s heart. Then he would figure out which would be the better solution.

Once inside William’s chest, Dr. Bleiweis thought William’s left atrium was a bit small to accommodate the right pulmonary veins, so he created an intraatrial baffle — a tunnel directing the blood flow from William’s anomalous right pulmonary veins (located near the junction of the inferior vena cava and the right atrium) into his left atrium, where it belonged.

We knew then that Dr. Bleiweis knew what he was doing, and we trusted him. Now I’ve found a study of 26 patients over a 10-year period that shows “the intraatrial baffle repair seems to have a lower incidence of postoperative complications and a better patency rate, at last follow-up, than the re-implantation of the scimitar vein onto the left atrium.”

We’ll take it.

The Heart Murmur

2010-01-28T22:11:00.003-05:00

I did it even when my 14-year-old son was a baby. And I was doing it now. Holding my breath. Praying. Watching the pediatrician’s face as he listened to my 4-month-old son’s heart and lungs during a routine well-baby check-up.

One minute. Two. My son’s chest. His back. Three minutes. Four. His chest. His back again. It was taking too long. He was listening to my baby’s heart too long. I closed my eyes and I prayed.

The doctor rolled his chair back and looked at me. I looked at him, thinking, praying ... Don’t say those words. Please don’t say those words.

“I hear a heart murmur.” He said it.

I pulled my son, William, tighter to my chest.

“Most of the time, these murmurs turn out to be nothing, Ms. Chavez,” the pediatrician gently told me. “But this sounds significant; I’m afraid it’s going to turn out to be something.”

“I’m going to refer you to a pediatric cardiologist,” the doctor explained.

My heart dropped. There was a problem with my baby’s heart. His heart.

I wanted to rewind that day, July 30, 2004. It had been just a normal day. Now it was anything but.

“If this really is something,” I asked the nurse practitioner on my way out, “what do I look out for? How will I know if something has happened or has gone wrong?”

“He’ll have trouble breathing, he’ll look blue,” she answered in a hurry as she went to help another patient. But she looked sad.

It wasn’t nearly enough information. I was terrified. I cried all the way home from the doctor’s office. I reached toward the backseat, trying to hold William’s hand. I realized I had to tell my husband our infant son has a heart murmur and needs to see a pediatric cardiologist.

The innocence and naïve joy of having a new baby were gone. Everything changed that day. Our lives were never going to be the same.

The eight-month-long road to a correct diagnosis was ill-paved and rife with potholes. We spent five months in the hands of physicians who were poor listeners and even worse diagnosticians.

It was a fearful, heartbreaking, stressful time. William was never well. I developed Bell’s palsy that September, and my 16-year-old nephew was killed in a car crash five days before Christmas.

After that, getting William well took on new meaning and our efforts to do it amplified. We “fired”’ our pediatricians and found a new one. One who listened, examined and treated carefully, methodically and cautiously.

William’s correct diagnosis – scimitar syndrome, a rare variation of partial anomalous pulmonary venous return – came just days before first birthday. It was the result of the divine meeting of the medical minds of two thorough and thoughtful physicians.

The first was our new pediatrician who had immediately questioned and investigated the diagnosis that William’s heart murmur was functional. He thought it sounded pulmonary and was concerned because he could hear the murmur in William’s back. Functional murmurs, he said, typically can only be heard through the chest.

The second brilliant mind was a pediatric radiologist who had read two sets of William’s chest X-rays – four months apart – and noticed the same problem in each: William’s lungs were unequal in size and function. Of all the patients that pediatric radiologist sees in the hospital and in his radiology practice – and he remembers my son and these minute details of his lungs. That still amazes me.

Once William was diagnosed and we got to the Shands/University of Florida Congenital Heart Center, everything got better. We learned so much about his particular condition and we no longer feared that he would drop dead while he was running in the yard with his brother. And wonderfully, at Shands, we continued to find doctors who listen, examine and treat carefully, methodically and cautiously.

I hug, kiss and tell my children every day that I love them. I stare at them and marvel in their beings, their health, and their lives. I will never forget William’s four-month, well-baby check up and hearing those words “heart murmur.”

Those words and all the days that followed have changed our lives forever. I would not have believed it then, but I know now, they have changed for the better. My husband and I are a stronger couple. Our family is a stronger family. We appreciate our lives in ways we never did before. We have William's heart to thank. We didn't think it then, but we know now, we wouldn’t have William’s heart any other way.

An Empty Bed

2009-12-27T02:31:00.002-05:00

I’m listening to my 5-year-old son William play on the floor with his cars, helicopter and his cousin Jonathan’s aircraft carrier and I remember the first night he did not sleep at home.

He was 8 months old and had pneumonia. He had been fighting respiratory infections for almost four months. He was so sick by now, he would just lay on your chest, moaning, listless, exhausted. At our insistence, the pediatrician admitted William to the hospital on Tuesday, Nov. 16, 2004. I don’t know if his life was in danger or not then, but we felt like it was. He was so ill and weak, my husband Joaquin and I felt like the next illness might take him from us. We were terrified we would lose William.

I stayed with William in the hospital for three days while Joaquin stayed with our older son Martin, who was 9. I would not leave my baby. But by day four, I was depleted, and Martin wanted me home. Martin and I drove to the house we had moved into only three weeks earlier. An old house with outdated décor and in disrepair. We had not even unpacked. Our home was no sanctuary and I desperately needed sanctuary.

I needed to pack clean pajamas and William’s own diapers for him. And that’s when I realized why I didn’t want to leave the hospital. I did not want to come home to William’s empty bed.

I went to his room and leaned into William’s crib. I knew he wasn’t there. I prayed he would be back in it soon, but worried he wouldn’t be. For a moment, I realized that if we did not figure out what was at the root of William’s health problems, that one day, he would not come home. My heart broke and I sat on the floor by his empty bed and I cried.

I did not come home again to stay until Monday, Nov. 22, when William was well enough to be discharged. That night, I went to his room and leaned into his crib and kissed him. William was home.

On Dec. 15, we drove William 2½ hours south to Shands’ pediatric pulmonary clinic and learned they wanted to test William for cystic fibrosis. The pulmonologist seemed convinced that’s what William had – a progressive, debilitating lung disease that would likely take William’s life before he turned 30. We prayed and held William close. Thankfully, the test was negative. We rejoiced and thanked God for this blessing.

Five days later, on Monday, Dec. 20, my 16-year-old nephew Jonathan died in a car crash. My sister Becky’s only child. He was a beautiful, kind-hearted, funny kid who loved his family. His death came out of nowhere.

After a long night in the emergency room with my sister and family, I came home. I went straight to William’s room, leaned into his crib, picked him up and sat in our rocker. He slept and I held him tight and rocked him. As I sat there, I pictured nothing else but my sister coming home, going to Jonathan’s room and finding only his empty bed. A bed she had no hope of ever seeing him in again. My heart broke and I cried.

Today, our friend Sara grieves for her 17-year-old daughter, Eliza – a beautiful, insanely optimistic child who had more courage, more verve, more doggedness than any child or adult I’ve ever known. A wise and soulful spirit, Eliza.

Becky and I drove to Sara’s house to see what might need doing before Sara comes home from Shands, where she has lived with Eliza in the pediatric intensive care unit for almost 8 months.

I saw a light on in the kitchen and I remembered something Sara wrote to us … that the thought of going home without Eliza makes her ache. I pictured nothing else but Sara coming home, going to Eliza’s room and finding only her empty bed – with no hope left of seeing Eliza sleeping peacefully there again.

My heart broke again and I have cried. For Becky and for Sara. For William’s hard and frightening first year. But most of all, for Jonathan and for Eliza. Your beds are now empty and our hearts will never fully heal, but your lights, your lights will always shine.