A Letter from our Surgeon

We sent Corey’s heart surgeon, Dr. Luca Vricella, a Christmas card like we do every year. In it I included Corey’s first report card (all As, one B). I knew it would have meaning for the man who saved Corey’s life many times over, as it did for me. I wanted Dr. Vricella to know that his dedication and sacrifice to save the lives of children like mine is deeply appreciated, more than words could ever express. I wanted him to know that we think of him often, and I wanted him to see, with concrete proof, the kind of life my heart child has. How smart he is, how beautiful he is, and how none of it would be possible without this talented and selfless surgeon.

Today I came home to find a letter in the mailbox. Here is what it said:

“Dear Mrs. and Mr. Fleming,

It was wonderful to receive your delightful holiday card with wishes for the Holiday Season.

Many thanks for keeping in touch and the great picture of you with Mason and Corey. Hearing from families and watching their children grow happy and healthy is one of the true blessings of our specialty. Let me thank you in particular for sending me his 3rd grade school report card, it meant so much to me. When I took the liberty of sharing this with my own father, he told me that he wished that my grades were as good when I was in 3rd grade!

Although as always a little late, let me wish to you and your family a wonderful 2014, full of health, happiness and prosperity.

Sincerely Yours,

Luca Vricella, M.D.”

Corey’s going to pass out when I tell him his grades are better than Dr. Vricella’s! I love that guy.

 

Mardi Gras or Birthday Bash?

Image

The question is this: what’s wilder – Mardi Gras or my son’s ninth birthday party at the bowling alley? I am here to contend that my son’s party wins. If you’ve been to Mardi Gras, maybe you got some fun-colored beads. Maybe you danced all night in the streets. Maybe you sang one too many renditions of “Margaritaville” and woke up with a tattoo that said “Pat” on your butt, only you couldn’t remember who “Pat” was, or is, or if Pat even exists on planet earth. But I bet you didn’t have a bowling ball dropped on your foot by a third grader.

This year we decided to celebrate the heart-child’s birthday by partying at the bowling alley. Every birthday is a victory over his CHD, and apparently nothing says “in your face!” to CHD quite like a bunch of third graders annihilating pizza, cake, popcorn and ice cream cups all over a bowling alley. When planning the party, we thought it would be a great idea to invite 5 of Corey’s classmates to take over one lane. Then, to add to the fun, we thought we’d invite some of Mason’s friends and give a second lane to the younger kids. We had 13 kids total, ranging in age from 2 to 9. I don’t know where my brain was when planning this party. Possibly in my butt under that Pat tattoo.

Everybody who was invited attended. The party started out fine. Parents dropped off their children, said goodbye, and initially the kids all concentrated on getting their bowling shoes on and starting their games. The big boys were pretty competitive to start, trying to out-do each other and actually knock down the most pins. You know, the actual point of bowling. But then two things happened. First, one of the boys demonstrated his Olympic-caliber bowling skills by scoring two strikes right out of the gate, which deflated the rest of them. Second, another group of kids showed up for a birthday party in the two lanes right next to ours. And they were girls. Third-grade girls. What do you think happens when a bunch of third-grade girls show up to bowl right next to a bunch of third-grade boys?

Well I’m going to tell you. The girls totally ignored the boys. They were fully intent on setting up their game and getting down to business. So the boys decided to step up their game. This started with the boys pulling their shirtsleeves up and comparing the size of their muscles, loudly. Did that get the girl’s attention? Uh, no. So they stepped up their game again and started a wrestling match right in the middle of the lane. Excellent. Wrestle Mania meets Third Grade Bowling Party. And guess what? None of the girls even glanced in their direction. In a last ditch attempt to get the girls to look his way, one of the boys decided a good place to sit would be on top of the ball return. Which of course inspired other boys to give it a try too.

Meanwhile, on the lane with the younger kids, people were tripping and falling, getting their fingers pinched, complaining “he stole my ball!”, yelling for more pizza, and just generally trying to kill themselves and everyone around them. Again, really, what the hell was I thinking?

We somehow managed to break up the wrestling match between the older boys, get everybody off the ball return, and get everybody back into the actual bowling game. At which point one of the younger kids rolled a ball down the lane with enough force to push a feather about two inches, and guess what? The ball stopped dead in the middle of the lane. To solve this problem, one of the other kids decided to throw another ball down the lane. Very helpful. So instead of one stopped ball in the lane, we had two stopped balls in the lane. When I looked back there was a ball stuck in the gutter. This feat defies all known laws of physics, because the bumpers were up, making it impossible for the balls to even go into the gutters. Right.

Then one of older boys, not to be outdone by the antics of the younger kids, managed to pitch a ball across the lanes, over the bumpers, and into the middle of the girl’s lane. I don’t know if this was a Hail Mary to get the girls to look at him or if it was an honest mistake. Either way, I hid my face in my hands to cover up the burning red embarrassment on my cheeks. The grandmother of one of the girls shot me the look of death that only old ladies can master – you know the one. You’ve seen it. It’s scary. So I did what any well-adjusted woman would do in this situation. I ran and hid in the bathroom until the balls were all off the lanes. “Um, I just have to wash this pizza sauce off my hands. Be right back!”

By the time it was over the place looked like a war zone and my cheeks hurt like hell from nailing a smile on my face for two hours. But really, despite the insanity, I will say that it was worth it. Because Corey had a blast at his party, and in the end, what else really matters?

Athletes with a Congenital Heart Defect

The Sochi Olympics are in full swing, which got me thinking about athletes with CHD. Everyone in the world of CHD is probably aware of Shaun White, but there are some other noteworthy people who’ve managed to become athletes despite their special hearts. For example, I met Brian Roberts, major league baseball player for the Baltimore Orioles, when he was part of an event for children with CHD. He’s a classy and inspirational guy. Here is a list of 10 athletes with various defects, including Olympians.

Ten Athletes with a Congenital Heart Defect

1. Aaron Boone – former major league baseball infielder (bicuspid aortic valve)

2. Beau Casson – former Australian cricketer (Tetralogy of Fallot)

3. Lauren Holiday – Olympic gold-medalist in soccer (atrial septal defect – ASD)

4. Nwankwo Kanu – retired Nigerian soccer player and Olympic gold medalist (aortic valve defect)

5. MacKinzie Kline – golfer who played LPGA tour (heterotaxy syndrome)

6. Jane Lee – marathon runner (Tetralogy of Fallot)

7. Ramie Mohlman – US Olympic gold medalist, FILA World Cup of Sombo Wrestling 2006 (unspecified heart valve defect)

8. Brian Roberts – major league baseball player for Baltimore Orioles (atrial septal defect – ASD)

9. Brandon Rouse – defensive tackle for Clemsen (coronary hypoplasia), passed away after collapsing and going into arrhythmia

10. Shaun White – Olympic gold-medalist in snowboarding (Tetralogy of Fallot)

The Great Agent Search!

When I decided to search for a literary agent in lieu of directly contacting small publishers, I considered just playing the numbers game and blasting query letters out to everyone and their Aunt Sally. If you throw enough stuff at the wall, something will stick, right? Then I changed my mind. I’ve been doing a lot of that lately. Instead, I decided to refine my search for agents down to a group that (I thought) was more likely to be interested in my work. The agents that I’ve been in contact with so far have been really classy, and I appreciate that so much, because I know how wildly busy they are. The number of submissions received daily by agents is astounding, so I am grateful for any feedback they have to offer.

One agent told me that she was sorry she wasn’t the right fit for me, as she only represents children’s books. That was my mistake – I’m not sure how I got from “the books she represents remind me of Where the Wild Things Are” to “hey she’ll love a book about CHD!” She said she understands the importance of my work on a personal level, as her nephew has CHD. That was good to hear. 

But I have some good news! An agency that I am very excited about asked me to allow them a three week period to evaluate my proposal and sample chapters exclusively. I happily granted that, and now it’s time to wait and hope that they see the importance of this book. And not because I’m so fabulous, but because Corey’s story of hope is one that needs to be heard.

In the meantime, I’ve settled on this as an author photo for the day when the book is finally published.

Image

My Son Loves Dolls

Image

 

I’m going to take a break from talking about the publishing process/agent search and talk about a subject that’s wildly off topic. This post isn’t even about the heart child – it’s about his heart-healthy brother, Mason. But first, a quick update on the agent search: I’ve sent about 20 queries/submissions thus far, and received a few rejections. I’ll just have to keep on keeping on I suppose. More on that later.

Let’s talk about my son and his dolls. Ever since he met his first Disney Princess, it was love at first sight for Mason. He loves all things pink, frilly and girly. As his parents, we have done our best to allow him to be exactly who he is. For example, this year the one item he wanted most from Santa was an American Girl Doll. He now owns Caroline, and she goes everywhere with him. She sleeps next to his bed. She watches him build Legos. She’s pretty much everywhere that he is, except at the dinner table. I drew the line there, because I don’t want spaghetti sauce in the hair of this $100 doll.

Last year he was obsessed with princess dresses. He wanted his own. So Santa brought him 3 Disney Princess gowns. Those of you who know Mason know that he is a HUGE kid. Literally a full head taller than all the other first graders in his class. Finding Disney Princess gowns that fit a giant 6-year-old boy was a challenge. But I did it! And he stomped around the house in them for a couple of months. He has now outgrown that phase, but I’m so glad we let him enjoy it on his own terms.

I think about what might happen to my son if we chose to squash his love of dolls and princesses. Instead of growing out of his princess-dress phase, would he have gone on to rebel as a teenager? And what would that have looked like? Something mild like dying his hair pink? Or something more permanent, like piercing his nipples and tattooing his face? It’s hard enough to figure out who you are – there are plenty of people my age who haven’t figured it out yet – without having people in your face telling you that you are wrong or bad for not conforming to society’s gender-based standards. 

And Mason is learning to self regulate. I have mixed feelings about this. On one hand, I am glad that he is capable of being realistic. On the other, I am sad that he has to justify his love of the color pink to anybody. At the ripe old age of 7, he already understands that some kids will make fun of him for loving girls and princesses. Not long ago, a kid on the bus sneered at him and called him “a stupid little girl.” That really broke my heart. But it also gave me a chance to tell him, one more time, that it’s okay for him to be just exactly who he is. Whatever life throws at him, he will always have his mother’s love and support, and like every other mother, I hope only that it is enough.

I need an agent!

My book is written.  My pitch is written.  My proposal is written.  I was all set to pitch small publishing houses, but then, after speaking with another author, I changed my mind.  I may end up trying for Tiny Publishing House You’ve Never Heard Of, or self publishing, but first, I’m going to try and land an agent and end up with Random House.  Why not go for the gold?  If it doesn’t work out, at least I’ll know that I tried.

So how hard is it to land an agent?  Here’s a good quote from the National Writers Union, “Finding a literary agent is like moving to a new town and having to find a contractor to remodel your house and a mechanic to fix your car all at once.  It has a strong element of Russian roulette.”

Great.  Where’s my gun? 

The key to pursuing an agent is apparently patience.  Everything I have read suggests that finding an agent is difficult.  Extremely difficult.  If you’re lucky enough to find an agent after six months and hundreds of query letters, working with the agent before your book is submitted to publishers will take another six months.  Or a year, or two years.  It may be a decade before my book sees the light of day if I stay the course.

A decade is too long.  So I’m going to try and land an agent for the next few months, and if I can’t do it in that time frame, then I’m going to pitch the small publishers directly.  It took most of the day yesterday to get seven query letters out, so I need to get back to the computer!

Wish me luck….

 

10 Easy Elf on the Shelf Ideas

How do we celebrate Christmas with a heart child? As normally as possible. This year the boys are fully invested in the magic of Christmas, and that is wonderful. They also love their Elf on the Shelf (Super Magic Elf). Every morning they bolt out of bed and go on a hunt to find her. Where will she be next? This is awesome. Until a few days before Christmas when I find myself banging my head on the Christmas tree. I’m ready for her to fly home to the North Pole, because the only place she hasn’t landed so far is on my head.

Anyway, I thought I’d share some of the fun places our elf went in the house.

IMG_6129[1]IMG_6127[1]IMG_6125[1]IMG_6124[1]IMG_6121[1]IMG_6118[1]IMG_6117[1]IMG_6114[1]IMG_6112[1]IMG_6111[1]

Famous People with CHD

I’m still working through the publishing process. My pitch and proposal are written, and I intended to approach small publishers directly, but I have changed my mind and am now searching for an agent. During the course of this search, I discovered that Sylvester Stallone has a child with CHD, as he wrote a forward to a book about CHD. This brought me to a search for famous people with CHD. I discovered this fascinating list, compiled by another heart mom (also named Jennifer – we’re everywhere!), and I wanted to share it here. This is the list as well as the direct link to her blog (I have not changed the list at all):

http://anotherchdjourney.blogspot.com/p/famous-people-with-chd.html

“Famous People with a Congenital Heart Defect

Famous Heart Parents with CHD Kids

Please note this is a list of people that are in the public eye for something other than Congenital Heart Defects.

This specific list is only for those people who are in the public eye for something other than CHD but who also happen to be a heart parent or a CHD Survivor.”

Let’s Take the Heart Child to the Dentist! In the Snow.

IMG_5742

When I think about fun, I think about the dentist. When I really want some excitement, I take the heart child to the dentist. And his brother. At the same time. Because you can never bring enough children under 10 to the dentist. Maybe next time we’ll bring a friend!

Yesterday the boys had their 6-month check-ups at the pediatric dentist. This is always stressful for all the obvious reasons, but, since Corey is a heart child, we get to add in the extra bonus stress of taking antibiotics before the visit. Why does he have to take antibiotics before his routine dental check-up, you ask? Some doctors/dentists feel that there is a great deal of bacteria stirred up during a dental procedure (including cleanings), and therefore it’s a good idea to take precautionary measures for people with compromised hearts. We don’t want the bacteria infecting Corey’s heart.

Corey, thankfully, swallows pills. We hand him his baby aspirin (the only medication he takes daily) after dinner every night, and he just swallows it with his drink. It’s handy when he needs ibuprofen and anything else too. Except the pre-medication for the dentist. This used to come only in liquid form, and he had to take 40 milliliters (8 teaspoons) of that nasty “cherry” flavored gooey foulness. Which he just loved doing, as you can imagine. If you add cherry flavoring to dog poo, do you think it tastes any better? Right. And for any of you that have given your kids liquid medication, you know that 40 mL is a LOT of liquid. Four of those 10 mL syringes. Ack.

So at 7 am twice a year I get to negotiate, cajole, coerce, beg Corey to take all this horrible medication. Once, when he was younger, I just had to hold him down and force him to take it. He cried the whole time and I felt like Conan the Barbarian. I think we’re both still scarred by that incident. But! This time there was finally a pill option. Four shiny little pills – hallelujah! I ask every time for the meds to come in pill form, and every time the pharmacist and the dentist both say “no.” Not this time. They said “yes!” Corey swallowed his four pills like a rock star, and we were ready to go!

Except that it was snowing. Did I mention that it was snowing heavily the morning of the appointment? Heavily enough to close schools? Right. Let’s go to the dentist in the snow!

On second thought, I decided I wasn’t going to do that. Their father was going to do that! I am a full-fledged snow weenie. That’s right – I said it. I do not drive in the snow. If there are 3 flakes outside my window, I’m not driving anything other than a sled. But Damian isn’t. Daddy to the rescue!

Corey took his pills, everybody got bundled up, I handed Damian a steaming hot mug of coffee, and off they went! The roads were bad, but the appointment went well for both boys. In the past, because Corey has weaker teeth due to his CHD, Corey has needed to have some cavities filled. Not this time! It was a clean bill of health for both my boys, and everybody came home safely a couple of hours later.

And then we went sledding……

Fear Factor

Image

We are all afraid of something. Or perhaps we are afraid of many things, but there is one thing that comes immediately to mind when someone asks, “What are you afraid of?”

I was trolling the WordPress daily prompts again, contemplating the different ideas tossed out to bloggers. One suggested writing about a time when you ate humble pie. I thought, “Well I must have eaten humble pie at least a dozen times, but I can’t think of a single specific scenario worth writing about.” So I ditched that one. Next!

I found “fear factor” (http://dailypost.wordpress.com/2013/11/28/prompt-fear-factor/) and thought, well this one is obvious. My greatest fear is probably the same fear that all parents of CHD children share. I am afraid my child will die. It’s hard to acknowledge this fear. It’s hard to say it out loud. Somehow that makes it more real. But it is there. I just choose to live around it. In spite of it. I remind myself that tomorrow is promised to no one, and whatever may come next, I have done right by my child.

I’ve thought about it a bit more lately, because of the good news I received from my cardiologist about my own heart. Fearing that you may outlive your own child is a terrible feeling. And so there was some small comfort in knowing that my own heart was weak, and maybe I wouldn’t have to suffer that fate, simply because I would go first. Before my time, but before his time as well. I am glad to know that I will be here to see both of my children grow up, but now I have come back again to the idea that it might not be me first.

I have a friend whose child has cystic fibrosis. Sometimes I wonder how she lives with this. And then I think she must live with it the same way I live with Corey’s tricuspid atresia. I remind myself, tirelessly, that Corey lives well and is happy now. I remind myself that where there is life, there is hope. I remind myself that it is not in my control. It is not in my hands. It’s in God’s hands, and I just have to accept the road ahead as it comes.

But I really hope the road ahead is less rocky than the road behind.

PS – Thanks to The Huffington Post for making me laugh with their hilarious fear photos from the Nightmare Fear Factory. (http://www.huffingtonpost.com/2012/10/18/nightmares-fear-factory-haunted-house-photos_n_1980308.html#slide=1646897)