#LoveLoveLove

#LoveLoveLove

Tuesday, April 12, 2016

Five Years Gone (The End is Here)

"There will come a time where you believe everything is finished.  That will be the beginning."

That quote closed out my first blog post shared in May 2011. Because it really felt like the end. Which seems so incredibly silly now, but at that point I'd had a baby, a massive heart attack and by all accounts, a miraculous survival.

I was still in a drugged-up foggy haze of chest pain, anxiety, and fear. I was scouring the internet to find anything other that autopsy studies on SCAD in between searches on all things baby.
Cam was about seven weeks old - I'd just celebrated my first Mother's Day.


This moment now - as I sit here and write - was unimaginable. Implausible. Impossible. Unrealistic.

These last five years and this moment - I can't begin to describe what an incredible gift this life is. Five year filled with long days, sleepless nights, tons of "firsts", and so many struggles. Sometimes boring, sometimes overwhelming - mostly ordinary. Some days being a heart attack survivor was all I could talk about - not because I wanted to, but because the weight of that reality felt inescapable. I had to find a reason for surviving - my life had to matter. How could I think otherwise?

And then, as time does, it all flew by.





 






And then..........














I could write all night but I won't. This moment now - is so real and so perfect and was so unimaginable because of its epic goodness. There are other stories to tell, but not here.

Thank you for being a part of my re-BIRTH.

.....Most kind of stories
Save the best part for last
And most stories find
You make your past your past
 

It's a brand new day
The sun is shining
It's a brand new day
For the first time in such a long long time
I know, I'll be ok.....





Tuesday, May 26, 2015

The Climb

Talking about death and dying sucks.  No one wants to talk about death in general, let alone their own - and who would want to when we're all so busy living?  Generally speaking, I think we pretty much all avoid thoughts of our own demise and busy our minds with anything and everything that keeps our thoughts from straying.
Since becoming a parent and a heart attack survivor (practically in the same breath), I'm pretty sure that not a single day has gone by where I don't think about my life and death.  As I've spoken with other survivors of disease, trauma, accidents, etc., it seems that most of us are in this boat.  We want our experience to mean something - we don't want what happened to us to be an accident or twist of fate.  We search for reason and meaning and truth in hopes that something we stumble across will explain to us all of life's mysteries. It can't possibly be that we were in a random place at a random time and something randomly awful happened to us.
I recently came across the term "felix culpa" - latin for "happy fault." Wikipedia describes this as "a series of unfortunate events that will lead to happier outcomes." Religious people come to associate the term with the Christian concept of "original sin" while the Oprah Magazine shared Martha Beck's "The Choice You Have to Make When Things Go Terribly Wrong" - this is an interesting read, if you have a minute.
I'd really like to think that I've *handled* my heart attack well (*thanks for the terminology, Olivia Pope). I was 28. Life felt normal. I was floating along, checking the boxes - grad school, marriage, baby, blah blah blah.  All wonderful things - so, so wonderful. I don't remember being scared of much - because I was busy living my life. But heart attacks really hurt.  And they're scary - because you actually feel your body struggling to survive. And then I continued to be alive, but I almost died and everything seems upside down and dark and twisty. All of a sudden, life felt delicate, fragile and easily extinguished. My whole life, up to that point, I'd never felt such a disturbing concept (and perhaps, that makes me luckier than most?) 
Living didn't stop. It just looks a little different now - the way I spend my time, the food I eat, the things that I let worry me (and especially, the things I don't).  I had to overcome my fear of public speaking to share this experience with other women. The mixed blessing is thinking about everything perhaps a little harder - but the new part of the normal has worn away and now it's just life again.
I bring all of this to the surface now for a few reasons - our choice to bring Emelia into the world wasn't undertaken lightly. There are other SCAD survivors who've made the decision we made - there are many MANY others who will not carry another child post SCAD. Some doctors advise one way while others take another route.  EVERYONE has an opinion (especially those who aren't asked.....). I can't wait to welcome this sweet girl and make Cameron a brother - but I'm still scared.  My fear didn't evaporate or hide behind a future of endless possibility. It just sort of co-exists with the excitement, hope, anxiety, delight and a bazillion other emotions that overwhelm pregnant ladies day by day.
Perhaps one could draw the conclusion that she is part of my "felix culpa" - my lovely & amazing outcome after a rather crappy health scare.  I wish I could say I wasn't scared of what's to come - but really, what parent isn't scared for themselves or their kids?  I hope for a healthy, happy baby and a boring post-partum (at least health-wise). There's not much else to do but enjoy all the moments I have and look forward.


Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
I may not know it
But these are the moments that
I'm gonna remember most
- The Climb, Miley Cyrus (yeah, I know, but she makes a good point)



Monday, May 25, 2015

BecauseHope2 - The Rest of That Story

The idea of Emelia (much like her brother) took up residence in my heart and mind long before she'd taken up residence in my belly.

I'd spent the first two and half years after my heart attack trying to ignore this.  We'd had enough conversations with enough cardiologists who knew pretty much nothing about SCAD to understand that nobody had any idea of what could/would actually happen should we decide to get pregnant again. In my earlier years of survival, there weren't studies and virtual registries and SCAD Survivor Facebook Pages & chat forums - there were autopsies and sad widowers, motherless families and an intense medical conundrum.  It was only my kind OBGYN who advised us not to make any permanent decisions - after all, Brian and I were 31 and 29 respectively, in the summer of 2011.

And so, we enjoyed our little family and watched our little boy grow from a baby to a toddler to a boy, soaking it all in because it really does pass in the blink of an eye.  We scoured the internet, and met with professionals and talked to friends trying to figure out what the next step would be.  We decided that fostering to adopt seemed like the way ahead and so we spend the majority of 2013 preparing our home and reshaping our lives to welcome another child.  Our first and only foster children arrived in late August 2013. You can revisit that here.

On a warm fall afternoon in September 2013, a co-worker and I met for our weekly walking meeting in Tower Grove Park. The leaves were obviously thinking about falling but summer was hanging on for dear life. We ran through our agenda, giving updates and making plans, before checking out with a personal update.  I had to chuckle when she asked for chocolate because she knew I ALWAYS had some on me during "that time of the month"- which, after years of working together, was the same time for many of us in the same office.

Except that, as I scanned my calendar, I realized I was three days late.

And it would be another three days and a small fortune spent at the drugstore before my body confirmed I wasn't pregnant. But, in that six days, I guess you could say the damage was done.  The idea of Emelia had drifted beyond my heart and mind - I could see her in Brian's face and Cameron's face and in my own reflection.  She had taken up residence in my voice every time I deflected questions about our family planning. She had started twinkling in my eyes (again much like her brother). I mulled over the best way to tell my sweet husband I wanted to reopen the can of worms before I realized that no grand announcement was actually needed - though exasperated (and often referring to life with me as "riding on the crazy train"), he already sensed I needed to figure this out.

We spoke with my regular doctor, my highly revered cardiologist and my trusted OBGYN - who all listened to us, advised us of an "unknown" level of risk and agreed to support any decision we made. Trusted OBGYN referred us to a much sought-after high risk Perinatalogist  who could *easily* juggle the torches of my second pregnancy. It would take another three months for this doctor to review my medical history, draw vials and vials of blood for testing and tell us, quite bluntly, that we had the green light from him to get pregnant.

SAY WHAAAAAAATTTTT?

Brian and I were supposed to go back to work that day. Instead, we sat on the floor of our family room, eyes glazed over, trying to comprehend the tsunami of change headed in our direction. After years of hearing enough "I don't knows" which sort of really means "no", hearing a "yes, and..." was breathtaking. Shocking. Time-stopping. We had information. We had a plan for treatment.  We a team of doctor ready to support our decision.  The shock of it all is that there was no need to jump into the unknown.  We merely had to take each other's hands and step forward together.

It would take another nine months (complete with wacky pregnancy apps and a bittersweet miscarriage) for Emelia to find her way from twinkling in my eye to taking root in my belly.

"Sometimes we make the process more complicated than we need to. We will never make a journey of a thousand miles by fretting about how long it will take or how hard it will be. We make the journey by taking each day step by step and then repeating it again and again until we reach our destination.Joseph B. Wirthlin




Wednesday, December 3, 2014

The Next Episode (BecauseHope Part 1)

"Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start."

It was an absurdly humid day in August 2010 when I was sipping wine with colleagues and swapping stories of foolish, youthful escapades. The wine tasted funny and as I scrolled through my Blackberry, I realized I had missed my period. I rushed to the drugstore and then I rushed home to pee on a stick and thus the idea of motherhood, the glimmer of Cameron began to take shape.


The same day I confirmed my current pregnancy (Part 2 will spend a bit more time on this), a young man named Vonderrit Meyers was shot and killed in front of my neighborhood corner store - about 1.5 blocks from my house. We hadn't been home at the time - Brian was traveling for work, so Cam and I ventured out to the county to enjoy dinner at my parents house. Our bellies were full and Cam was dozing off when we turned off the highway. I followed our standard route home, only to be blocked by police tape and flashing lights.  I did a u-turn and headed for a back street as Cam perked up.

Mama - what is happening?! Is there an accident?

Intersection after intersection was closed.  I stopped in the middle of the street and hailed a jogger.

Hi there. Sorry to bother - do you know what happen?

Yes ma'am.  A young man was shot and killed tonight.

I rolled up the window and proceeded to snake through my neighborhood until I made it home, knots in my stomach.

Mama - what did he say? Mama. MAMA! AHHHHHHHH! WHAT DID THAT MAN TELL YOU?
MAMA, YOU TELL ME RIGHT NOW!

I couldn't say anything. Except that someone was hurt.

We arrived home and I promptly broke the important rule that "everyone sleeps in their own room". That night, I tucked Cameron in next to me and patted him to sleep before turning to Twitter to figure out what the hell had happened. A few states away, Brian would be watching a live stream of the shooting scene and unfolding demonstration.

I laid in the dark, scrolling through my news feed trying to make sense of everything.

Off-duty Police officer/Flora Security... a black teen (or two or three?)  armed - (first with a sandwich, then a gun).... acting suspicious, wearing an ankle bracelet.... officer three blocks off Flora, why? 

I couldn't make sense of any of it. I willed my husband home sooner than planned. I patted my son.I stared at his little cherub face. I patted my belly. I stared at the 5 pee sticks (4 with stripes and the digital one that literally says PREGNANT because I didn't trust the first batch). And I felt fear. Not immediate fear or healthy fear or even the fear I'd prepared to feel upon getting post-SCAD pregnant.

A deep, heart wrenching, stomach turning, hand wringing fear for my child(ren).

How will we raise them the be good? To treat everyone with love and kindness? To be eager to make friends especially with those who are different from them? How will we raise them to be cautious, to respect authority, to make healthy decisions? How do we share the whole world with them, even the parts that we know little about? How do we show them all the things they need to see? Is there even enough time? How do we protect them from hate and evil and violence? How to we teach them to be respectful and to stand up for others and for what they believe in?

I desperately quieted the thoughts in my head by focusing on Cameron's dreamy breathing and allowed thoughts of his sibling replace the unanswerable questions.


"I got two hands, one beating heart
And I'll be alright
I'm gonna be alright
Yeah I got two hands, one beating heart
And I'll be alright
I'm gonna be alright" - Ingrid Michaelson

Sunday, August 17, 2014

Threedom, Threenager, Threenado (Or The first of the "lasts")

“Having children is like living in a frat house - nobody sleeps, everything's broken, and there's a lot of throwing up.” ― Ray Romano

I can't help but think that it must be really hard to be three.  I mean, something that mama laughs at one minute becomes annoying as hell the next.  How are you supposed to know when your tricks stop being funny? All these mommy bloggers write about how damn crazy their three year old is, but those three year olds sit around thinking "Well, duh, you made me this way. What did you expect? I'm just as crazy as you are." You want to be really independent (and clearly any child of mine could be a bit headstrong) but you haven't refined control of your limbs or mastered motor skills quite yet. You are very emotional and your feelings can get hurt quite easily. Your parents are raising you the best they can, but they have no idea what the world we be like when you're ready to spread your wings. Three year olds experiment with fibs and thrive on manipulating any unwitting soul for whatever is their heart's desire. And three is still just the very, very beginning.

As a mama, I can look back on the last three years and mark them with so many "firsts" it makes my head spin. First smile, first solid food, first little tooth, first stumbling steps, first hair cuts (complete with saving the first curls), first word.... first trip to the Zoo, first time on a plane, first overnight stay at grandma's, first friends, first fibs, first timeouts, first pee-in-the-potty, first night in a big boy bed. And then, over the past week, I found myself marking a bunch of "lasts" with Cameron. Last day at daycare, last Wednesday spent in the care and spoiling of Grandma Gigi, last "fun friday" with me...... because my little boy is going off to pre-school. He keeps asking if he's leaving for college tomorrow (Thanks a lot, Toy Story 3). God help me, if the next fifteen years go by as quickly as the last three years, I am going to be the clingiest mother EVER come freshman year. Brian will have to lock me in the car when we take Cam to the dorms.

I am excited for him to start at a new school and make new friends. I am excited for this first.  But I can't shake the bittersweet shadow of how fast it all goes. I could definitely do without more "lasts" for awhile (unless it's the last temper tantrum.... I'll take that "last" any day :).


“I sometimes wake in the early morning & listen to the soft breathing of my child & I think to myself, this is one thing I will never regret & I carry that quiet with me all day long.” ― Brian Andreas


“When you take the time to actually listen, with humility, to what people have to say, it's amazing what you can learn. Especially if the people who are doing the talking also happen to be children.”
― Greg Mortenson

Thursday, July 24, 2014

Death in the Afternoon

When I was three years old, my dad's dad, my Grandpa Val, passed away in India.  I never met him as he never visited the states and I didn't travel to India until I was five.  One of my earliest memories (I think) is of my dad, sitting in the kitchen.  It was evening and the only light on in the kitchen was the dim one over the sink.  He sat there, silently, glassy-eyed, in between the kitchen table and the wall over. I remember hugging him, dancing around trying to bring a smile and after awhile, succumbing to the allure of banging spoons and pot lids together. He never said a word - it was almost as if he was running through every moment with his dad in his head.  In a hazy way, I recall my mom telling me that Grandpa Val had died but I don't really know if I knew what that meant or if she even tried to explain it to me. But I know, very deeply, that this memory represents my first experience of death.

On a recent Saturday morning, Brian's cell phone rang well before anyone in my house was stirring.  He ignored it.  When the caller tried again, we knew to answer - and learned that Brian's grandfather Clarence (affectionately referred to as Shorty) had passed away. This wasn't a surprise - Shorty had recently celebrated his 90th birthday and was bed-bound with a number of circumstances that invade the body in old age. The following day, we drove out to visit Brian's parents and my mind was with my husband and his father.  While I didn't have the pleasure of knowing Shorty in his hey day, I'd certainly heard stories of his humor, his energetic personality and his love of family.  As Brian drove down the highway, eyes on the road, he said to me " So.... how are we going to explain this to Cameron? I mean, explain what he's going to see?"

Oh crap.

Here I was, worried about the Siebert men and their ponderings of mortality - and it really didn't even occur to me that I needed to explain (or at least be ready to explain) death to an exceptionally inquisitive and sassy three year old. Brian and I realized we had about three days until Cameron would experience his first wake and funeral - and see his daddy as a pall bearer. Truthfully, we never considered leaving him home or leaving him out- we committed to including him in the grieving/good-bye to the Siebert family patriarch.

So... during another car ride later that week, Cameron asked me to tell him a story.  Rather awkwardly, I decided to tell the story of Snowflake....

"When mama was a little girl, she really wanted Grandma Gigi to get her a puppy.  But instead, for her 10th birthday, Grandma Gigi got mama a white parakeet with sky blue wings and some gray spots.  Mama loved Snowflake - the little bird lived in a black cage in mama's room. And mama had to feed Snowflake and give her water and treats and clean the poo out of her cage. But one winter Snowflake became very old and sick and died.  Pop Pops had to bury Snowflake in the backyard and mama was very sad." (I neglected to tell him that the ground was frozen, so Snowflake stayed in a plastic bag in the back yard for a few weeks until the ground thawed enough for burial...though at 32, I now wonder if my parents fibbed and actually just threw the corpse away?!)

Anyway..... Obviously Cameron was very interested in this story.  After asking to repeat it a BAJILLION times and as I attempted to draw some sort of connection between Snowflake's death and Grandpa Shorty's passing, Cameron crafted his own three-year old conclusions:

"So.. daddy and Grandpa Steve are going to bury Shorty in our backyard? But where will Mowgli play?"

"Is my Mowgli going to die? What brother will I have then?"

"When Grandpa Shorty gets buried in the ground, will he go to heaven? I think he'll grow into a beautiful oak tree. Or maybe some flowers. Or the clouds or a lumpy, bumpy sweet potato (the sweet potato thing was very clearly from our recent, much-coveted library book)

And then, as the two of us drove from the church to the cemetery:

Cam: Will you die?
Me: Yes, one day I'll die.
Cam: And, will my dad die?
Me: Yes, one day, a long time from now, dad will die.
Cam: And will I die?
Me: Yes, sweetheart, one day, so long from now, you will die too. Everything that is alive dies.
Cam: Well. I don't think that little boys die. Just oldy old people. That makes me sad (voice trembling).  But when I die, I want to lay down next to you so we can talk about colors (one of his favorite things to do before bed).

As a parent, I think there's all these things in the world that you want to protect your child from.  But you can't really protect your child (or really yourself either) from the truths of the universe.  And, when it finally comes time to address them, it turns out children are perfectly capable of defining their own reasons, stories and outcomes to make sense of the world that most of us adults are never able to quite make peace with. I always think I have so much to teach him..... But really, I am just at the start of learning all the things he'll be teaching me.

“And that's just it. This is how it is. Always. To pay attention to things. People. And the good-byes. You never have the time you think."
― Amy McNamara



Saturday, July 5, 2014

Women of a Certain Age

A few weeks ago, I turned 32.  Since my heart attack, I have taken great care to celebrate the hell out of my birthday - sometimes, it takes a week just to fully enjoy it.  Maybe that makes me selfish or self-centered... so be it, it only happens once a year. But something felt a little funny about turning 32.  I wasn't nearly as excited as usual - I hadn't roped Brian into nearly enough fun; I didn't pester Cameron to make his mama a cake; and I couldn't figure out what my friends and I would laugh about for the next year. Usually, it's just not that hard. I shared this with friends shortly after extinguishing my birthday candle (in a crepe this year!) and the bluntest of the group promptly responded -  

"You probably don't want to hear this, but you're just crabby that your 32 and still have one kid. I mean, even Cameron's asking for another one. I don't even like kids and I want you to have another one."

&*^*&%()(&&%^$!!

We love and hate this friend don't we?? The only one who says what you know is true even though you really want them to keep their damn mouth shut.

So, it was a while back when Cameron was about seventeen months that I really started itching for another child.  It wasn't really that anyone else cared; there was no pressure, no nudging, no nosy-ness. It was just me and that ticking clock. But, I figured it was coming.

Then you turn 32.  Though just a year from 31, it's apparently a huge leap in the direction of 35 - which I've learned from EVERY WOMEN'S MAGAZINE or morning show spotlight that 35 is when your eggs die and womb shrivels up and you begin avalanching downhill toward menopause. Your friends start to find comfort in sharing their "miscarriage" story (Sadly, it seems that more women that I realized have one of these). People begin the ask if your kid is the only child and tell you stories about the ONLY family they know with one kid. Your metabolism continues to slow; and then people eyeball your soft belly and ask if you're pregnant (Hooray, she hasn't doomed her only kid to a life of awkward loneliness!!).

                 A brief aside - if you ever think to ask a women if she's pregnant, consider the following:

                       a) Is a fetus actually falling out of her? (if no, do not ask)
                       b) It's none of your business.
                       c) She might not want or be able to have kids/more kids and now you've ruined her day.
                       d) It's none of your business.
  

 Ok, anyway - I really do find this business quite funny. I mean, whether your a mom with one kid or five - who really wants to hear about how Kelly Preston, Halle Berry and Gwen Stefani had children in their forties - so honey, there's still time! You can be one of those cool "old moms"!!!

Here's what's true for me - there is some kid in the universe besides Cameron that's mine.  I really hope that kid arrives in the next few years because truth be told, chasing little kids is hard business and I don't want to be the cool old mom who throws her back out playing wrestle and bonk. But I think it's really awful that many women like me (early thirties, able to read/hear) hear how often we're "running out of time" - to find a mate, to have a kid, to have another kid, to settle into our careers, to save for retirement, to have fun, to be young.  I mean, it's almost laughable if it wasn't sooooooooo annoying. And I know what is true for me isn't true for you. I hope you can embrace your truth (and even the fact that the truth can change!)

In the end, it just so happened that the Missouri Botanical Gardens threw a "Be a Kid" party on my birthday - inviting adults into the Children's Garden for an evening of kid-like fun.  Which wound up being the best way to spend my 32nd birthday.  Who would have thought?!


Climbing up was easy (In kitten heels no less!)
But getting down? Not so much

Lucky me, with the best friends & family!


Wishing :)

And, a few other photos from a GREAT birthday celebration - 










“To live is to be marked. To live is to change, to acquire the words of a story, and that is the only celebration we mortals really know.”
― Barbara Kingsolver


PS - I just want to say that some of the most AMAZING women in my life are over 40 and if at 32 I'm noticing all this crap, they must be super annoyed! Or, maybe at 40+ you really screen out the crap.

PPS - I could just kick myself realizing how long it's been since I've had a chance to write. Don't let me get away with that!!

Sunday, May 4, 2014

Cubed

Three Birthdays


Three Heartiversaries


Three SCAD "Reunions"

Three is a big deal. Three means no more baby/toddler stuff- you're officially a big boy with the fiery desire for independence and control. Sort of like a mini-dictator. Three can hate and love in the same breath. Three is like living with a tween. Three fills my heart with so much love I might burst... And cause equals amounts of heartburn. Three likes to tell bedtime stories because three has a hard time listening. 

Three means less medicine and less doctors appointments. Three is out of the tunnel, out of the woods. It's on the edge of that weird place I used to know - "normal" - though of course we know there's no going back. Three is far enough away for tales of heart attacks to be told with laughter over cocktails ("And THEN, in the middle of my life-saving cath procedure, I had to pee!)

Three also means that strangers became acquaintances and then acquaintances became friends. And not just because we're stuck with each other like a bunch of circus freaks. Because we have so much more in common than surviving a catastrophic heart event. We like wine. And cute shoes. Our children are adorable but drive us nuts. Some of us like to dance and karaoke.... And some of us prefer quiet evenings with a select few. Lots of things make us cry and when they do, there are TONS of hugs to go around. 

It's about this time every spring I begin to wonder "Now What?" Not in an impatient way - sometimes it's easier to live toward the next milestone, the next accomplishment, the next chapter. I sometimes suck at standing still. But it's been a big, busy full month of "thirds" and I can't help but feel like I've finally grown "roots" into this life. 

Anyway, I'll stop rambling. Here's a few photos from the 3rd Annual SCAD Research 5k Run/Walk (now called SCADaddle) & Reunion. 




"We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love." 

W. Somerset Maugham



Tuesday, February 4, 2014

Are you smarter than a 3rd grader?

Last week, I was invited to speak to 100 third graders in The Spanish School, a program of St. Louis Language Immersion Schools where I work. As the Director of Development, I don't typically spend instructional time with the children. Currently, the students are learning a unit on the human body & health and had just completed a section on the cardiovascular system. The 3rd grader teachers thought I would be the perfect example of how things are always how they look (i.e. I look healthy but in reality am a nearly three year heart attack survivor).

Let me tell you something - I generally suffer from a bit of stage fright before I speak in front of anyone.  It goes away the minute I open my mouth but ugh - stage fright is the worst feeling. Speaking to three classes of 8 year olds is as terrifying as presenting to a room of hundreds. Children are totally unpredictable. With adults, you know what they're going to ask - How often do you exercise? What do you cook at home? How are you feeling today? With kids, anything goes and you'll probably be asked the craziest-yet-most-pertinent questions. Also, I can barely manage my two year old (check out our recent interview for proof) - and he's just one kid.

So I prepared a powerpoint presentation that included the following slides:
  • Who am I? (Me & My family)
  • SCAD & My Heart Attack
  • How my life changed
  • Taking action for yourself
  • Taking action for others
I explained - in the least scary terms possible - what happened to me and how my lifestyle changed because of it. Not one of those kids made a peep while I was talking. I went on to share actions they could take to be healthy - eat lots of fresh food like fruits and veggies, don't do drugs/smoke cigarettes, get exercise, stop drinking soda (which was met with the most resistance) and go to the doctor every year for a check-up. I made suggestions about how they could help others - be an example for your siblings and friends, encourage others to exercise with you, share what you're learning with an adult and don't be afraid to call 911 if someone is in trouble. I definitely had to qualify that last statement with the addendum that "trouble" does not include your mom freaking out over a football game or your dad oversleeping.



Then...... I asked for their questions. A few brave souls shot their hands in the air with proud statements - My grandma does the heart walk every year! I do Jump Rope for Heart in gym class! I am a vegetarian! But, as proud as these kids were, there were four times as many children who timidly stated:
  • I've asked my mom/dad/stepdad/aunty, maw-maw/pops to stop smoking because I love them and they won't do it. My clothes always smell stinky.
  • When my parents pick me up from school, we always stop for fast food because it's easier and they're tired.
  • My older brother/sister/cousin never wants to do anything fun with me - they just want to watch TV or play video games.
  • My granny is so overweight and she smokes. I'm scare she's going to die - I even told her that but she hasn't changed.
And all these kids gawking at me because I'm The Lady in Red with ALL the ANSWERS.

I'm used to writing for/speaking to rooms full of adults who are moved by my story and who I hope will maybe make one change in their life for their health - but who really knows how often that happens. Do we ever really REALLY know if our actions make a difference? Every once in awhile, someone will tell me how my candid approach to sharing my story of heart disease encouraged them to make a change or embrace something new - and I really hope those decisions stick. I encouraged the students to keep pressing on with the adults in their lives because, as we all know, change is hard. They could not conceive of giving up soda - just like their loved ones wouldn't want to give up cigarettes or convenience foods. I did the best I could to encourage them not to give up and that while they were still young, they were capable of taking action on something they found important.

But their urgent questions continue to nag at me and have given me pause. Is it enough to change for ourselves? Is it enough to change for our spouse or child or other loved one? What does it take to make a change? Do you have to have a heart attack or liver disease or some other horrible illness to really get perspective? Are convenience and bad habits of more value than a healthy, full life? I want these kids to Go Red with me in celebration of life and heart health - not in memory of someone they lost.

“Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them” ― Antoine de Saint-Exupéry

“While we try to teach our children all about life, our children teach us what life is all about.”
― Angela Schwindt


Wednesday, January 29, 2014

SCAD, Interrupted (The one with some answers?!)

For the last two years and nine months, I haven't had any answers about why I suffered/survived a post-partum Spontaneous Coronary Artery Dissection (SCAD) and heart attack at the age of 28. No doctor could tell me why it happened or how it happened or if it would happen again. Some doctors listed off "associated" or "contributing" factors - maybe pregnancy or hormones or use of contraception. I shouldn't say "some" doctors - really, really smart doctors who are revered in their field & know alot about medicine and hearts and are good at what they do*.

So. Try to imagine my surprise (shock, disbelief) when a new doctor (who isn't even a cardiologist), who I've seen twice, manages to uncover not one but TWO abnormalities during a routine set of blood tests.  I won't go as far as to say that either abnormality  is a "causal" factor of my SCAD. But seriously - I've been poked and prodded and scanned and tested for every damn thing under the sun to no avail. I've been asked numerous times to admit to a drug habit (does a daily 5oz of wine count?) that would explain everything. This obviously makes sense because heart disease must be my fault. I must have done something to myself that caused my heart attack. That's the only way to explain it, right?

Wrong.

So, let me try to walk you through my own mini-medical breakthrough.
  • I test positive for Lupus Anticoagulant Antibodies. This pretty much means I am more prone to blood clots than the general population and this particular antibody attacks the lining of blood vessels. We'll never know if I developed this prior to my SCAD or in response to my SCAD. 
  •  I also have two janky copies of my Methylenetetrahydrofolate reductase - MTHFR - gene. First of all - that's the worst abbreviation EVER. MTHFR - really?? LOL. The takeaway here is that a MTHFR mutation can increase risk of heart attack and stroke.
To summarize - I have a double-whammy genetic pre-disposition to heart attack and an antibody that attacks the lining of blood vessels and encourages blood clots. 

To remind - During my SCAD, my Left Anterior Descending (LAD) Coronary Artery (aka The Widowmaker), dissected  (exposing the vessel lining) and a blood clot formed, causing a heart attack.

Does knowing more change anything? 

I'm not sure. There's a part of me that wishes heart disease was something I'd done to myself because maybe then, I wouldn't have to worry that I passed along a genetic crap pile to my sweet kid. But it's becoming increasingly clear that all of this really was out of my control. It is possible that I was doing everything right. But it doesn't matter what I did. Now, it only matters what I do - with my health, to my body and for others. 

American Heart Month starts this Saturday and Wear Red Day is Friday, February 7th. I hope you'll wear red to honor those in your lives living with or lost to heart disease. I have alot to be thankful for and will be in red from my lips to my toenails! 


"Most kind of stories
Save the best part for last
And most stories have a hero who finds
You make your past your past
 

It's a brand new day
The sun is shining
It's a brand new day
For the first time in such a long long time
I know, I'll be ok....." - Joshua Radin



*A quick note: 
As you know, I'm not a doctor or any kind of medical professional. What is written here is my interpretation of my own medical condition - please don't take it to be medical advice or guidance or anything other that me talking about my reality. If you have questions about your own health/medical condition, consult your own doctor or a healthcare professional

Sunday, January 26, 2014

Nine Lives (or The Places You Have Come to Fear the Most)

"Buried deep as you can dig inside yourself
And hidden in the public eye
Such a stellar monument to loneliness
Laced with brilliant smiles and shining eyes
Perfect make-up, but you're barely scraping by
But you're barely scraping by...


Well this is one time, well this is one time
That you can't fake it hard enough to please everyone
Or anyone at all...or anyone at all
And the grave that you refuse to leave
The refuge that you've built to flee,
The places that you've come to fear the most,
Is the place that you have come to fear the most." - Dashboard Confessional


 2012 Go Red Photo Shoot: Amy, Rachel, Rekisha, Lidia

Once upon a time, there were 10 of us. The reality of our heart disease and no-bullshit, scream-it- from-the-mountain-tops attitudes brought us together - our paths may never have crossed otherwise. We parroted the same message out into the world:

Heart disease is the number 1 killer of women
 Heart disease kills more people annually than all forms of cancer combined
 Heart disease kills 1 in 3 women
Wanna know what heart disease looks like? Look at me.

We share our stories over and over, in hopes they make a difference - we nag and annoy and repeat and surely, people get sick of listening. It becomes exhausting to share it and exhausting to live it and all you really want to do is let yourself be "normal", and be silent and blend in and leave it behind. 

And then, one of us died. It felt out of the blue and unexpected, but really.... really, it was just a matter of time. We'd been saying it over and over - heart disease kills 1 in 3 women. How could we really be surprised

The night that Rekisha died, I had to work late.  It was in the car on the way home that I learned of her passing. I tried so hard to stop the tears when I came in the door - but both boys knew something was wrong. Cameron, channeling me in his own little way, said "Shh, mama. It'll be okay. It hurts but it's not broken! Want me to kiss it?"

In my absence, my boys spent the evening building forts out of couch cushions. I concocted a steaming drink of almond milk, cocoa powder and peppermint schnapps and laid in a heap on the cushions. I watched her over and over again, hoping to get some perspective on the situation. Hoping that I could be fine thinking "It was her time" or "Her work was done." But it's not fine. Fuck fine. She was a mom and a wife and a daughter and a friend and a sister and so many things to so many other people. I've been through so many iterations of "what if" now that they all just blur together - what if she'd had better doctors? what if her heart disease had been discovered earlier? what if she'd been in a different city? Would the ending really be different?

So I can't get perspective. And it's not fine. And who knows what the right words are to honor her memory - I guess all you do from here is keep breathing and keep moving forward? And fight like hell so her death wasn't for nothing? 

I'll let you know how that goes.

 "I'm not afraid of death, but I resent it. I think its unfair and irritating. Every time I see something beautiful, I not only want to return to it, but it makes me want to see other beautiful things. I know I'm not going to get to all the places I want to go." - Viggo Mortenson

I'm not afraid of death, but I resent it. I think it's unfair and irritating. Every time I see something beautiful, I not only want to return to it, but it makes me want to see other beautiful things. I know I'm not going to get to all the places I want to go.

Read more at http://www.brainyquote.com/quotes/quotes/v/viggomorte553194.html#lRvaH1LM2PB0ybBs.99

Read more at http://www.brainyquote.com/quotes/keywords/unfair.html#Yl4MHc2Be0oCHUaG.99

I'm not afraid of death, but I resent it. I think it's unfair and irritating. Every time I see something beautiful, I not only want to return to it, but it makes me want to see other beautiful things. I know I'm not going to get to all the places I want to go.
Read more at http://www.brainyquote.com/quotes/quotes/v/viggomorte553194.html#lRvaH1LM2PB0ybBs.99