I have a new interview up at my blog, this time with Daria – a 17 year old living with Corrected L-Transposition with Pulmonary Stenosis.

I first met Dar when she was a fourteen year old camper at Camp del Corazon, a non-profit I volunteer with. Dar and her group of friends quickly became “my” kids, a group I look forward to seeing each year. Daria graduated camp last summer and I am eagerly anticipating her return in a few years – only this time as a counselor!

Click the image to read the interview

As many of you know, I volunteer for Camp del Corazon – a non-profit organization that sends kids (7-17) living with cardiac issues to a five day camp. We have space left in sessions 2 and 3 and I’d like to give you a Top Ten List of why you should send your special heart child to our wonderful heart camp!

1. There is absolutely NO COST to your family! That’s right, your child is granted a lovely five day camp journey with boat ride (to AND back!), room & board, activities – all at no cost to you!

2. Your child is amongst their peers with dozens of fellow heart buddies to spark new friendships and forge bonds that can last a life time!

3. Camp del Corazon is an ACA (American Camp Association) accredited camp!

4. Camp del Corazon was founded by a pediatric cardiologist and nurse! Trust me; round the clock care is there for your child with nurses, doctors and a fully equipped infirmary. ALL activities have a nurse stationed at them!

5. PIRATES! How can you go wrong with an awesome theme like pirates? Costumes, props and decorations are thoroughly encouraged for campers AND counselors alike to get into the spirit of our theme!

6. Your child’s itinerary may include just a sampling of these awesome activities: Swimming, kayaking, archery, arts & crafts, boom ball, court games, climbing wall, high ropes course, nature PLUS a free choice activity of their choosing!

7. Your child will stay off the California coast at Howland’s Landing, a private cove on the leeward side of beautiful Catalina Island! Gorgeous ocean view, fresh air and balmy, beachy days.

8. All of our activities center on building a camper’s self-esteem & teamwork skills through positive reinforcement and encouragement.

9. Thoroughly enthusiastic counselors (such as myself!) are there for the kids ~ to mentor and lead by positive example, to provide safety as well as fun. Did you know we also have quite the number of former campers turned counselors?

10. This is a completely unique experience no heart kid should have to miss, as it was designed specifically with them in mind. <3

Camp del Corazon (website)
Session 2: August 30th – September 3rd
Session 3: September 3rd – 7th

Camper Registration Forms here.

Feel free to email me with any questions, or call the camp office (provided at the camp website)

I cross-posted this to my blog.

It is fairly common for children to have a security blanket of sorts. Now, this doesn’t need to be a literal blanket ala Linus, but can take on many forms such as a stuffed animal or other keepsake.
I started off with a blanket, but due to a Grandmother who thought “out of sight, out of mind” cold turkey was the best method to break a six year old out of a thumb sucker habit, I had to switch to stuffed animal. (Totally didn’t work, Grandma. Old school child psychology FAIL!)

Specifically, my yellow Puffalump bunny who my mom officially dubbed Boo Boo.

Boo Boo with her hospital bracelet

I tried to give her a proper name for when the nurses and doctors asked, but Boo Boo always stuck.

This noble, stuffed bunny was dragged everywhere I went – sleepovers, doctor appointments and surgeries being her most needed moments of comfort. I never went a single night of my childhood without her either closely hugged to my chest or as a makeshift pillow under my head, her ears as a substitute for my long, lost blanket.

She was there with me during cold echocardiograms, annoying EKG’s, painful IVs, obnoxious student doctor visits and those frightening moments between being wheeled away from my mother into the operating room and officially under the anesthesia.

When I woke up from every procedure and operation, Boo Boo was right there next to me. I wouldn’t know until I was twenty-two that she was never kept in the OR with me (note to parents: Please don’t tell your kids. It’s easier to believe than it is to know).

Over the years she has needed a few surgeries herself – stitch-ups and patches, and years of love has given her a permanent cannot be washed worn look. Since my last major surgery in 2004, Boo Boo has enjoyed a peaceful retirement, sitting quietly on my pink bedside drawers next to where we sleep at night.

I put on a brave, loud and fairly obnoxious front as a child, but part of the ability to do so was having my bunny clutched tight next to me, providing comfort, love and security.

image source

I am beginning a series of interviews with adults and teens living with congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term. This is cross-posted at my blog Glass of Win.

Meet my first interviewee, Carissa!

The interview is quite lengthily, so please proceed after the jump.

Continue Reading »

We’re back at this game, are we now? Waking me up around 6:00am with those obnoxious knocks on my chest, knock knock knock, like a timid religious solicitor? You don’t know if you want to slow down or go for the gold and kick into high gear. I don’t which is more annoying and troublesome – having a full-blown tachycardia episode that sends me to the ER, or this slapdash flutters that make me put my life on hold while you decide what you’re going to do. I don’t know what I did to deserve this half-assed attempt at rebellion. I took all of my medication, I’ve been getting enough sleep, I’ve have not had much caffeine or alcohol in the last week, and my activity level has been it’s usual moderate-low state.

You have no reason to complain. Do you just want the attention? I think so. I think you just want to be the center of attention because a lot of good things have been happening and are coming up and you have been feeling neglected. Mom even took the day off of work because you’re so wishy-washy and she doesn’t know if you’re going to pitch a tantrum or what. God, you are such a drama queen. By the way, I don’t appreciate the headaches, either. I don’t know if they’re necessarily related, but as you came shortly after I started to receive bad headaches, I can’t help but be a little suspicious.

We have a birthday party tomorrow, heart. A play-date with fellow heart patients, so you’ll be amongst friends…You know this! We’re not going to go if you keep acting like this, though. You keep behaving like this and we’re staying right here at home, young lady, and going absolutely nowhere. Is that what you want? You want to be a wounded, self-pitying recluse for the rest of your life? I don’t think so.

I’ll do whatever I can within my power to make you happy and go back to normal. Let’s just try to do our best to stay out of the emergency room, okay? Promise? All right, now pull yourself together and let’s get better!

I recently joined with Formspring, an internet-based open Q&A where people can be logged in or anonymous. Although there are some silly questions asked by my friends, I really opened it as a way for those living with CHD or a loved one with CHD can ask me questions/advice purely based on my experience. I thought I would share the two questions I received thus far and answered.
Now, I do not claim to be an expert on anything other than being myself and my answers reflect this.

Question One: My daughter, who is ten, is having her second open heart surgery this summer. Her first surgery was performed as a baby. How do I prepare her this go around? She is scared and anxious and I feel so helpless? What can I do for her?
Answer: Remind your daughter of all of the potential benefits and opportunities this surgery will bring to her. Will her heart be stronger, and will she be able to do things she previously struggled with? Start talking about life after the surgery – what the new school year will bring, what hobbies and interests to take on. I know it is difficult to get her mind off of it, and you can’t 100% but having a goal in the future beyond the surgery and recovery time is ideal. For the immediate future, the time between now and summer, why not start a creative project? Does your daughter enjoy crafts, writing, painting, swimming, singing, yoga? Finding an outlet to relieve the tension she feels & learning the ability to express her mood & feelings is essential.

Question Two: I also have a CHD, and had openheart surgery 1 1/2 years ago to replace my valve. I have a toddler, and I am living each day terrified, feeling like I have a ticking time bomb in my chest, panicking that I won’t see her grow up. Did you need therapy?
Answer: I did, mostly in high school because I was so stressed out and putting myself in the ER with stress-induced tachycardia. Therapy is nothing to be ashamed of – in fact, it’s probably good you are talking to someone who is hopefully giving you coping techniques. I want to assure you though that you DO NOT have a ticking time bomb in your chest; you have a fabulous testimony to the wonders of technology and medicine in that valve replacement, which has given you the *opportunity* to see your daughter grow up. Take care of your body, live a healthy life filled with love and family. Any time a negative thought slips in, I want you to snatch it like you would a gnat swarming next your face, and ask yourself, “Should I let myself go to this dark area of worry, or should I instead spend quality time to my child?” The answer is up to you.

my formspring

I know I blame you a lot, and not every source of misery originates

with you alone. You know how I love to throw parties, however, and a

pity theme is very en vogue. I don’t have to spend a lot of

time in the kitchen worrying about food because there isn’t but one

attendee and lucky me I win all of the games!

Seriously though, I know you can’t help but be yourself, as you were

brought and formed in this world. Like any of us. But where does blame

go? My genetic contributors? I think they punish themselves enough;

they never needed my help. The Universe and its wonderful wizard

behind the curtain? Maybe, though it’d be awfully egocentric to truly

believe such attention to detail was bestowed on li’l ol’ me.

The sad truth of the matter is there is no one to blame. No malevolent

entity or lack of prenatal care. The truth of it is: shit happens.

It’s a frightening truth, honestly. It’s easier and more comforting to

believe everything in life, no matter how minuscule to the workings of

the universe it may be, is purposeful. It’s just easier for everything to

have a name tag on it to better mentally organize and cope. Oh, sure,

you can call it transposition of the greater arteries with ventricle septal

defect but really, in actuality, it’s just One of Those Things.

Take 15% off any piece of my CHD-inspired HEARTwork collection and if you mention “Blog4CHD” in the notes I will provide FREE S&H to USA & Canadian residents!

If you’re living in or going to be in the Southern California area in April, consider stepping out for Gala del Sol, a glamorous black-tie charity event to benefit Camp del Corazon, a non-profit organization benefiting children with cardiac issues.

We have to be strong, and we have to survive because we have plans. Got it?

I’m not one to bully you around, but this is kind of serious. We have to

remember all of the ones we left behind in Philadelphia – baby Alice who

loved us to much she could not have the curtain between our beds

closed, Lauren with the long, scraggly brown hair, Raven with the

braids, the 100-watt smile and the cool sunglasses, Jeremy, the

teenager with the ponytail and guitar, baby Jordan who we watched in

the playroom while his exhausted father went to get himself some

more coffee, Nathan who we had wheelchair races with on the fifth

floor west wing. These and other kids we met along the way give us

purpose, a duty to go on in case they were unable to. We can’t let

these precious memories and lives go to waste. Of course, it was easy

back then, to be friends with kids like us. Life was still the biggest

adventure of all, and take it for granted I did. I was completely

unaware of the real danger we faced.

Unaware, ignored, I can’t tell you which now.

With adulthood came the bitter cognizance about mortality and

what having a congenital heart defect truly means. It had been a good

fifteen years since I knew anyone else with a CHD and frankly, I was

comfortable with that. When I did become involved with CHD-related

volunteer work, (camp del corazon) my rolodex was suddenly filled with

wonderful individuals living with a profound understanding with what I

have gone through because they had, too. I also knew children,

children!, with complexities more convoluted and harrowing

than mine. Admittedly, I struggled with accepting these people in my life

and for the first few years, I would come home from camp and break

down emotionally. I love them all so much and I do not want anything

negative to happen to them. Opening my life and my heart to them has

been an on-going battle because I fear getting close, allowing myself

to care for them and ultimately loose them. One could argue that an

individual runs this risk getting close to any human being, of course,

logically I know this. I am not dealing with the logical part of my brain,

however, I am dealing with the dominant emotional part that has to

weigh the option of keeping a cool distance versus embracing these

friendships with my all.

I can accept my own congenital anomaly, my own medical pain. I

can endure the blood tests, the stress tests, the lack of energy, the

medication, the surgeries, but seeing others go through this breaks my

heart and paralyzes me with fear. I’d venture into the depths of the

River Styx and deal with Hades directly on their behalf if I could. There

are no deals with conditions such as these, however, and certainly no

guarantees. Giving into that vulnerability, permitting that risk – the risk

that someone simply may not be there any longer and I will feel loss

and sorrow – has been a terrible inner battle. I have come to realize,

however, that it is a battle I have learned to accept and even

welcome. The friends I have made, these wonderful, brilliant individuals,

have only made my life brighter. Let’s keep the lights burning as long as

we can.

My HEARTwork collection.

For a brief, yet poignant time in my childhood, I lived in King of Prussia, Pennsylvania – just 40 minutes west of Philadelphia, where I was a patient at Children’s Hospital of Philadelphia (CHOP). The five years I spent in this little town brought me the most profound experiences that would shape the adult I am today, from the two wonderful elementary teachers whom I still attempt to keep in contact, to the two life saving open heart surgeries (performed by Dr. Norwood himself, if you don’t mind a little horn tooting), to forming the two most meaningful relationships of my life; that of my cat, Mr. Destiny (hello, crazy cat lady here) and my best friend, KD.

Those five years saw me in and out of the hospital more times than all the rest of my years outside of the 19406 ZIP code put together. My heart “problem” (as we so lovingly referred to it) was well known throughout the town, especially those unfortunate individuals who happened to either work or attend or have some affiliation with the elementary schools I attended because I was at school just as much, if not more, as I was at home. My health reached new levels of high tension drama, one that could quite easily rival any prime time medical show (I’m looking at you, Dr. House!), and one instance my heart having a throw down with me garnered enough attention to send me in local King of Prussia infamy that still follows me today.

During the winter of early 1990, between my second and third open heart surgeries, I was enjoying a peaceful morning in my first grade class. My teacher, Ms. Twiss, chose myself and another little girl to take the slips of attendance and lunch orders up to the office and cafeteria, respectively. This little girl and I…did not get on well. She did not like the way I looked, and I did not like the way she displayed behavior common to a sociopath. We made the walk up to our respective destinations in silence, I to the office first while she went on to the cafeteria. As we were instructed to go together, I knew we would have to go back together as well. I waited in the main foyer for her return from the kitchen when BAM! Everything went black.

The next thing I knew I was lying on the overstuffed, split-pea green vinyl bed in the nurses office while phones were blaring, people were rushing in and out, talking in rapid, tense tones and panic rose in the air. The nurse, dear Mrs. Noll (whom I would later see in my adult life and thank profusely, though there are no words to express the gratitude I feel for this woman) told me to lie still, my parents were on their way.

I caught on that something was amiss, though I laughed it off and insisted I was fine, cradling my head in my arms Ferris Bueller style to emphasize my point. That is when I saw it – my thick, mint green and pale pink woolly sweater leaping in rapid palpitations from my chest, over and over and over, as if it had suddenly been given the Powder of Life. It was tachycardia – and after the initial shock wore off, embarrassment set in. WHY HERE AT SCHOOL? OMG!

My parents were soon by my side, paramedics on their way but caught in traffic. TRAFFIC? Traffic! What could they do; they were a good twenty minutes away and I needed to get to CHOP now. It was decided that the spacious field beyond the baseball diamond would be made use of by the hospital-issued helicopter and I would be air-vaced to the Childrens Hospital of Philadelphia. I believe my reaction was, and I may be paraphrasing, “Rad!”

Embarrassment was gone, and what I oft refer to as my patent False Bravado (a self-preservation tool) officially kicked in. I could hear the principal speaking with my classmates in the cafeteria; she had wisely decided to hold an impromptu assembly so as to keep little busybodys away from the windows as the medics strapped me in my own luxury seat and wheeled me to my first class position on the waiting helicopter. On our way out, I caught sight of local news vans and told the medics my left side was my best side. They laughed and secured me in my sweet new ride, my dad buckling up near me, ready to join in on the adventure.

When I eventually returned to school, my best friend proudly showed me the newspaper where my aerial had a write-up and told me I even had a spot on the local news. Dude, I was famous.
Fame is fickle, though, and not a year went by afterward nor in the years after I would move from Pennsylvania and return irregularly for visits that a person stopped me, mid-conversation and cried, “Oh my GAWD! You’re Rachael Faught? You’re the Little Girl with the Heart Problem? You’re the one that got picked up in a helicopter? I totally thought you were dead!”
Moved to Fresno…dead…you know…same difference?
(Just kidding…go Bulldogs!)

I’m never insulted, however, because I always take great comfort in the fact that upon realizing who I am, though perhaps we had very little interaction as children, these well-meaning individuals always seem extraordinarily relieved to discover I am alive and (relatively) well.
Twenty years later, their peace of mind at unburdening them with thoughts of a fallen peer still never fails to bring a smile to my face, and determination of survival to my spirit.

note: I’m on Formspring ~ a great forum I am using to promote open questions & answers regarding life with a CHD.

Second letter in a series of open letters I am addressing to my heart.