"A Time I Had Courage"

I love William's second-grade teacher, Ms. Webb. She gets her students -- and especially my 8-year-old -- thinking about life ... in funny, silly and serious ways. One of her assignments recently was to have her students write about "A Time I Had Courage." 

William was only 27 months old the time he had to have the most courage ever, so he has little if any original memory of this time, but we have talked to him about it enough, he has seen photos of this time enough, and he has heard us tell his story to others enough, that he knows a lot about this particular time he had courage. 

I'm not going to tell his story this time, though. He has done that all on his own . With William's permission, here is his story about "A Time I Had Courage."

Don't Be Afraid to Ask for a Heart Screening

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!

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!”

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 Florida. 

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!

Five years ago today, we gave our son over to the pediatric heart team with the UF Health Congenital Heart Center 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

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!

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

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

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

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!

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

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.”

Diane Crim Photography. Used with permission All rights Reserved. RCDC Photography.

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

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.  

Diane Crim Photography. Used with permission. All rights reserved

 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?

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

“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.