Words – The Gateway to Life and Death

 Definant Child Emotional Scars

“Children should be seen and not heard” a line frequently stated in my house growing up.  Daily mothers remind children of their place and praying that their children don’t embarrass them in public with their words. My mother words ring in my ears today reminding me that there is a time and a place for me to watch what comes out of my mouth. 

God, Are You There? It’s Me, Amy’s Mom

At this point in life my mothering skills remain unused due to lack of marriage and childbearing experience – that’s an entirely different story for another day.   If the old saying’s true… that your children’s behavior is payback for your childhood…then a lifetime’s sleepless nights lie before me. 

As it stands, the list of “do(s)” and don’t(s)”  regarding  acceptable child behavior grows exponentially as the pace of my exposure to children grows. Hopefully with significant time spent in prayer and a sharp eye focusing on the elements in my children’s environment I can keep my own from becoming derelicts. My mother still prays daily for the reformation of my derelict status. God still refuses to answer her. 

Out of the Mouths of Babes

Emotional Scars Bullying

When I think of how the words of my future child might embarrass me, I am amazed at how individuals lacking fully developed logical thought processes impact the world around them. Mothers and fathers, alike, cringe fearfully when children’s words innocently embarrass them. Parents’ fearful thoughts rarely include the potential impact their child’s words could leave on a peer…a lifetime of scars. Children can, unknowingly, create deep excruciating pain because of the habits learned from adult role models.  Parents worry about how their child will embarrass them, but do they worry about how their child could hurt another child…or worse, the child him- or herself?

Words Have Power to Heal and Hurt

Parents’ actions and words pattern appropriate behavior for the next generation. At what point do adult speech filtering capabilities evaporate? Yes, adults often engage in politically correct chatter, but seldom consider the impact their words can have on a heart. As the grey hairs rapidly increase in number upon my head, life teaches me that people intentionally use words to cause others pain just to fulfill something missing inside them.

Yes, I know it’s a bit naive to be 37 and just admitting to this to myself, but I tend to believe deeply in my heart (like teenage girls believe that Taylor Swift is a good singer) that people only desire to do good in actions and words.  Yes, this is one of those times that I will admit “denial” is more than just a river in Egypt.  Is the risk too great for our own egos to guard not just our hearts, but also the hearts of others only speaking words of kindness versus pain? Remember what grandma always said, “If you can’t say anything nice, don’t say anything at all.” Those were the days.

No Baby Is Ugly, But Words Can Belie an Ugly Heart

Just this past weekend someone mentioned a stepdaughter’s pending birth of her first child. The future mother was a bit inconvenienced with the timing of her new bundle of…well, she was not considering it joy because she wanted to focus her time on making money versus bottles.  The woman who told me this information was more than aware of my infertility and deep desire to become a mother one day.  She chose to ignore this pain and instead of went through a long list of detailing to me the drama around this new “ugly baby” (that’s how she spoke of the child) while my heart cringed with jealous desire. How could they say this to me when my pain was so fresh from my diagnosis?  Words….

Oh, to live in a world where we only wielded the healing power of words rather than the hurting power.

Faith Interrupted

ScarsRSexyFindingthelight

Every day the sun rises and life offers new choices and experiences.  In an instant, our walk can change with a new interaction or choice…life—the delicate compilation of memories, hopes and choices. 

Our personal history, and that of those we love, defines our future.  We react to life based on our experiences, career disappointments, parental modeling, relationship breakups and friendship missteps. Our natural responses form from the fear of potential pain we have come to know so intimately.  Learned self-defense skills send us into our place of retreat that we come to know as the land of “The Great Sadness”.  Our internal defense fights to make choices that protects from a broken heart.  We learn to live in safety vs. risk….yet, we are dying inside. 

passion-in-life

When we live in fear, the darkness begins to overshadow light emanating from our Inner Being.  We lose who we longed to become in our youth and the belief that we are worthy of greatness.  Our belief in passion, found in life, exits our hearts leaving only bitterness in its place.  Our choices consistently resulting in pain and heartache begin to hold us in captivity.  

Scars, the emotional version, come from choices made out of a desire to secure our emotional wellbeing.  Shamefully, we approach these choices from our limited perspective of experience — we live and operate from what is safe and familiar to us.  When you live in familiarity, it becomes the predictor of the future.  We know how to guard our hearts, protect our bodies and how life will unfold as we venture further into living an unfulfilled life. 

At what point do the scars of the path stop predicting our future?  When do we take the risk in our lives to live and love?  How do we protect ourselves from soul gripping pain if we decide to make that leap into life…an exceptionally risk-filled life?  The risk of fulfilling our greatest dreams, fighting against what society finds as acceptable behavior, running after that one attainable great love…living with passion woven into our inner soul and knowing that something greater than us put it there. 

This life would require a faith that consumes us with celebration of our love for ourselves versus self-loathing — a faith in ourselves that we are worthy of love.  Our hearts, created to fulfill a purpose implanted in us by a Higher Being, craves liberation from pain and heartache. 

Yes, our inability to trust that everything will work out the way it should moves us into fear of the potential reality that our spirit will remain restless.  What if the outcome drives our hearts’ will deeper inside the darkness that hides our pain? So, do we continue to live in comfort and deny our hearts its greatest desire — finding complacency by living in a state of loss – until death or passion overtakes the brokenness of life?

7 Wet Wants and Deep Desires of Most Any Woman

I swam  a lot while growing up, but not the lounge by the pool, sungoodess kind of swimming.  I trained 2-3 hours a day in a pool doing thousands of laps followed by an hour of training in the weight room.  My love for the water has had a profound impact on my personality and, so, I thought I’d share a list of most every woman’s “wet wants” with you – one wet want for every day of the week.

(1) Tide (not a wet want) – I hate doing laundry with a passion.  The tedious nature of folding clothes, putting them away only to pull them right back in within days to wear them all over again. When I just think about someone washing all of my dirty clothes and folding them for me, pure giddiness fills my heart.

(2) Jacuzzi Staycation – Full moon, a glass of wine (I don’t drink, but who says your woman can’t?) and some great relaxing tunes. Nuff said. Even for those who don’t drink, sparkling apple juice in a classy wine glass still works. It’s all in the setting and the mood.

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(3) Grease Me Up Baby – Grab a bottle of jasmine-scented oil and massage my neck while I sit in a hot, bubbly tub. Of course, you can use oil of any scent, but make sure it’s a favorite of your woman’s. These sessions often lead to the focal point of the massage traveling to (ahem) more sensitive areas of the body (50 shades of YES!)

(4) Skunk Me – (Sh, I secretly want to own a baby skunk, but that really has nothing to do with this post).  Instead of spending money on all the perfumed lotion sets and girly soap-laden gift baskets you get for her on special occasions, get her one bottle of decent perfume. I wish everyone who gives me these theme baskets would just get together and p0ol their money to get me a bottle of amazing perfume. And I’m talking real perfume – none of this Britney Spears Crazy Train (or whatever it’s called) from Walgreen’s. Think more along the lines of shopping at places like Nordstrom’s, Nieman Marcus, or Saks Fifth Avenue. They have real perfume. Walgreen’s (or any drug store) does not.

(5) Finding Nemo – My affinity for water, I dream of living in a house with aquariums set into my walls; exotic fish dancing around to show me their beautiful designs – complete with Duece Bigalow’s jealousy shinning through as he cleans my tanks. OK, so maybe your woman likes snow, not the beach (like my ski resort obsessed friend, Samantha Gluck). Wet, powdery snow falling softly on the slopes of Aspen or Park City represents her wet want in this case. And, no, a guppy bowl from Wal-Mart or a plastic snow globe from China just won’t cut it.

(6) Hang Loose, Baby – Based on the motley collection of surfers I “hung 10″ with, it’s likely that surfing doesn’t rank high on your woman’s list of wet desires. But my stress levels subside and my inner peace expands when I’m mounting a waxed surf board — my reason for listing it as a wet want. Maybe your woman would list hiking in the foothills of the Rockies as her wet want here – think of clean sexy sweat making those hiking clothes cling to your bodies as the wet element here.

(7) Lather Me Up, Please – Years ago, my hairdresser — named David — washed my hair (and that of all his clients) with the utmost care.  Oh no, not just chatting clients up about their latest life drama; instead, he used the shampoo to massage clients’ neck, shoulders, ears and your forehead. The feeling approached orgasmic proportions. Yes, ladies and gentlemen, it was erotic with a capital E. He looked like a greek god fashioned from the DNA of Johnny Depp and Richard Greico.  O (pun intended), yes!

I personally know who actually hired David just to massage their necks with the shampoo.  He would lean over the front of us (vs behind the basin) so that we could smell his incredible manly scent and see his gorgeous chest, rippling with muscle.

His hair washing technique stoked the fire of many a woman. I’m talking about that burn that aches rather than blisters. Boyfriends and husbands probably never made the connection between their woman’s uncharacteristically feral appetite for intimacy and the fact that she had gotten her hair done on those same days. Try surprising her with an in-home sensual hair washing session. Or, give her hair the ol’ rub-a-dub when visiting the Caymans or Vail (satisfying two wet wants at once, makes for a very wet time indeed).

Ok, so maybe you thought you were going to in find a list of sexual fantasties here, but who said fantasies have to be sexual? Hope you enjoyed my little list, men!  Ask your woman about her favorite wet wants today and fulfill them when she least expects it. Deposits in her emotional bank account today will result in great returns on investment for you (wink wink, because I know what boys want).

20 Loves in 20 Years

Yesterday I celebrated 20 years post liver transplant. In all honesty, I planned to make a post yesterday, but the flu took me down for the count. Even so, I wanted to share the 20 things from 20 years I am most grateful for, before it loses relevance.

(1) My faith-For in my sorrows I called to the heavens and He answered me with hope and comfort.

(2) Great loves-Love’s bite hurts us in the deepest of places of our hearts, but if I had not experienced these two great loves then coming to understand my worthiness of something amazing would never have happened.

Nutella-Baby(3) Nutella-I only smeared myself in this secret delight twice in my life and swore it off immediately after my butt expanded just looking at it.

(4) Colds and Flu-Reminds me that my body is strong enough to fight them everything I have faced medically and that is gift!

(5) Camp-The land of tears and laughter.

(6) Dreams of my grandparents-My grandparents both died over 10 years ago.  During their lives they sacrificed unmeasureable time and resources to my healing.  I can’t remember if the depth of anyone’s hugs rivaled that of my grandfather’s.  When my heart heaviness becomes unbearably my dreams are filled with the warmth of his arms and the smell of my grandmother’s friend chicken and it sustains me.

(7) Baby Poop-I changed my nephew’s first poopy diaper in the hospital and my eyes filled with tears of joy.

(8) Shoes-It might sound shallow, but shoes are my happy place when nothing else brings me a smile to my face!

what-is-a-double-doozie(9) Double doozies-Recently, I introduced my friend’s son to double doozies.  Thankfully, he hated them so I got the joy of crawling into the plastic container of delight alone.

(10) Approaching the treshold of eternity-The year I turned 17, I accepted my death and then my life began again.

(11) Heightened sensitivity-RockScar Love’s mission emcompasses all of the ways to heal scars.  To help someone heal an emotional scar requires you to see the pain and accept part of their suffering.  I ask God everyday to walk in suffering with me and those I love.

(12) Surfing-Mount a surf board as the sun rises or goes down….

(13) Fire alarms-My sister and I make memories in the simplest of ways…through tears, food and laughter. One of funniest memories would be  setting off the fire alarm at 2am trying to deep fry tofu in a frying pan.  Her two children, sleeping upstairs, unaware of our great effort to burn the kitchen down.

(14) Massages-Foot massages, body massages…nothing heals my soul more than someone coping a feel!

(15) Video blogging-Sometimes you meet someone and you realize that your heart has found a soulmate in some odd way.  It is not a sexual thing, but a piece of you finds your answer to your quitet place.  Video blogging, skype and google hangouts become the answer to staying in touch with those you love, like my friend Stephanie over at My Heart Your Hands.  I adore you, my pocket size friend.

(16) Stinky-I can’t have human kids so I adopt furry ones.  They snuggle, cost lots of money, cry when you don’t pay attention and throw up for no apparent reason.  Those are like other kids, right? (FYI, my15 year old cat really does respond to the nickname “Stinky”).

(17) Navel Ring-Six months after my liver transplant I had my navel pierced.  Boys, don’t get excited because it healed up years ago and my wild navel ring in gone…I can assure you it is only because my belly fat out weighs the muscle underneath at this stage in my life.  My navel ring represented freedom for me.  Freedom from my illness and from my feelings of abnormality when all I wanted was to be normal.

(18) Divorce-My parents, masters of divorce, taught me what I did and did not want in a marraige by modeling both concepts.  I am forever grateful for their successes and failures from which to learn and I wish that more couples today fought a little bit harder for their relationships.

(19) Moe’s Monday-Five dollar California style burritos every Monday.  Wanna join me?

(20) Grey’s Anatomy-If no one else in the world can comfort me, I still have Christina and Meredith.

 

Paging Dr. Jelly “McSexy” Fingers

Dr. RosenRosen "Fletch"

 It seems I’ve spent much of my life in emergency rooms and doctor’s offices having medical tests and procedures. My body sports over 15 doctor’s signatures on it in the form of scars. On average I have at least one doctor’s appointment a week. What am I trying to say here? I’m not immune to pain brought on by illness; nor, am I threatened by a guy in a white coat or his scalpel.  I do not have a passive tongue or wallflower attitude in dealing with my health issues. I tell you this in order to lay the ground work to share a little personal story with you.

Party in the Operating Room Like It’s 1999?

From what I remember, 1999 started off as a fairly healthy year for me. I had already received my liver transplant and had yet to develop osteopenia (a condition that has led to over 10 fractures in the past 4 years). Unbeknownst to my 23-year-old self, I had started to develop cysts on my ovaries (clearly, a foreshadowing of my future infertility).

If you’ve ever known a woman who has had a ruptured ovarian cyst, then she can attest to the incredibly painful nature of the experience. Imagine that someone reached inside of you from your back, grabbed your belly button and tried to pull your navel and guts out of your ass (yes that is the only appropriate word here).  

My first experience with a ruptured cyst proved my most painful one to date. One morning, in the wee hours, I woke up feeling that something just wasn’t right in my stomach…almost like something inside me changed during the night.  I got up ready to greet the world with my lovely shining smile and glorious morning personality that people know me for (sarcasm, folks).  I started getting ready for work and decided that makeup, styling my hair and brushing my teeth did not fit into my chosen routine that morning. 

Instead, I poured myself into a pair of jeans and headed to the hospital so my doctor could evaluate what felt like either a very bad case of gas, or the world’s worst case of spontaneous stomach cancer.  On the way I made the necessary calls to my doctor, mother, boss and jackass boyfriend to notifying them of my pending death.  While the phone call line up might not seem important now, remember this piece of information for later. 

I showed up at the hospital where they whisked me back into the emergency room to have me model their version of backless lingerie. Due to my transplant status, I got to skip-jump to the front of the emergency room line — ahead of snot-nosed adults and old guys having chest pains. They put me into a room with only a curtain separating me from the 60-year-old guy on a heart monitor. Once again, note this piece of information for later. The god of all that is doctors, my transplant doctor, Dr. S (his name not given here for his protection) came in the room to speak with me about my symptoms, thump on my belly, and told me that he would send one of his fellows in to conduct a further examination.

Here’s where the story starts to get interesting.

You see, transplant surgeons understand that their patients usually have a high pain tolerance and I’m no different. So, if I say “I need pain relief drugs STAT”, I mean it and they listen. Then, within a matter of minutes, I will start to smile again due to the help of my friends, Morphine or Deluadid. On this particular day, the staff gave me two large hits of morphine within 20 minutes of each other to take the edge off of my pain.  My standard response to morphine involves an incredible desire to go to sleep as well as loss of control as to what comes out of my mouth.  A time or two, I might have said some inappropriate things while wearing my morphine lips.

Dear God, is this hottie for real?

Dear God, is this hottie for real?

Just Lay Back and Relax

My doctor thought that I might have appendicitis and, apparently, a simple, accurate way to diagnose this involves a pelvic exam. If you don’t know what a pelvic exam involves, then Google it…I’m not explaining it to you here. My doctor and I have an unspoken agreement that he will not personally perform any examinations involving my private parts. So, he sent in a Fellow to do his dirty work.  (Remember: mom, boyfriend, co-worker, and old guy next to me and two hits of morphine.)

So, Dr. McYoungfellow walks in and, of course, it’s the one time that I find a doctor really good looking – ok, honestly, he was hot. Damn hot!  

I am pretty sure he felt the same about me because; all of the sudden, a little sexual tension seemed to settle in the room — or a lot of sexual tension and lot of smiles between us.  He proceeds by asking me some questions and then asks my entourage to leave the room (yep, mom, boyfriend and even my boss showed up at the hospital to watch the show). 

Cute-doc-boy proceeds to pull out the portable stirrups and perform the pelvic exam.  Even though I’m high as a kite at this point, it doesn’t mean I’m immune to pain and that exam has the distinction of one of my most painful medical exams – ever.  There were tears, screams, yelling and swear words so loud that my entourage surely heard it in the waiting area and became aware of my little-known ability to use diverse, colorful language that rivals that of any sailor.  

Though drugged, I heard the heart monitor on the old guy next door pick up in speed because he probably wondered if some type of ritual patient killing was taking place and if they were coming for him next.  Doctor McCutie told me about his findings, asked if I had any questions, and asked if he could do anything else for my pain.  I responded with, “Nope, and thanks for the best 5 minutes of my day”.  Yes, even during my hazy, pain-filled state, I tried to be funny and charming. Instead of returning my overtures in kind, Dr. Pretty Eyes was horrified, dropped his eyes and practically ran out of the room.

Seeking Doctor Sexy

My transplant doctor walked in a few minutes later shaking his head (which he seems to do very often with me) and asked me exactly what happened. “Yes,” I told him, “I want Dr. McSexy to hand over his digits.”  Thankfully, Dr. S has a fairly laidback personality and wasn’t nearly as horrified as his Dr. McYummy. He and his feisty wife both have a special place in my heart. In fact, I’m pretty sure he just considered it part of the initiation ritual involved in becoming a fully trained doctor. Now, do you have Dr. Sexy’s digits for me? Perhaps an email or social media handle?

 

Lotion & Lip Balm: Don’t Leave Home Without It

S959514BCIt’s been a while since you’ve last heard from me and I would apologize for that but I have good reasons.  I spent the month of December working on a film including three weeks in LA for filming.  I returned home two days before Christmas Eve and by Christmas Day, I was sick with the flu.  I thought I was better a week later but had a relapse on New Year’s Eve.  I rang in the New Year bundled up in a blanket on the couch doped up on NyQuil.  On December 22nd, our last day of filming in LA, I commented to my friend on set that I had made four movies in 2012 and that I wanted to double that number for 2013.  January isn’t even half over and it looks like I’m three films in already.  I definitely have one in.  As is usual, I got a text message from Amy this morning with the words “Girl Friday??” and, as is usual, I replied with some choice words followed by “It’s Friday already???”  So, here I sit, unprepared to write anything for you with my brain spinning out of control because I leave home on Wednesday to go work on another film – technically, to go on location to work because I’ve been busting my ass on this project for the past couple of days from home.  In the midst of all of this ass busting, I am doing glamorous things like laundry, hunting for a specific pair of shoes, and sorting through my work gear to make sure I have everything.  Today I shall share with you my list of my most vital things I never travel without:

1-      Freedom Rock.  No, not the As Seen On TV compilation album but, rather, a polished rock that has the word “Freedom” carved into it.  It lives in an old Crown Royal bag and it travels everywhere with me.  There is another rock exactly like it in a location somewhere in the world and only one person other than me knows the location.  No matter where I go, if I have Freedom Rock, I am grounded and connected to that one specific place.

2-      Cameras.  Yes, plural, cameras.  I take at least one digital SLR (plus lenses), one digital point-and-shoot, one 35mm film, and one medium-format film.  If I’m feeling frisky, I will throw in a Polaroid for good measure.

3-      Rechargeable phone charger.  These little contraptions are a lifesaver!  There are ones that use batteries and ones that charge via outlets, USB, and/or car lighters.  I have two so I always have a backup.  When you’re on location, the last thing you want is to lose the use of your phone or have to go skulking around looking for an outlet.

4-      Swiss Army Knife.  I shouldn’t have to explain this.

5-      Good Quality Lotion and Lip Balm.  Filming for me usually takes place out of doors and in any and all kinds of weather.  If you want to see me a thousand kinds of cranky, take away my skin and lip care for a day and wait for the wind burn, sun burn, cold, and chapping to set in.  I’ll kill you.

I think this list, while odd, is something that everyone can learn from.  Make sure you always take care of your skin.  Make sure you are prepared to either cut or fix anything needing cutting or fixing.  Make sure you can call home.  Make sure to document your travels no matter how mundane they seem at the time.  Most importantly, make sure you are always grounded.

Crossing the finish line on the side of Lance Armtrong?

Last week Lance Armstrong came forward and admitted that he participated in doping.  He had deceived just about everyone in the world.  People perceived him to have a superior body that gave him a competitive edge – something we all discovered simply isn’t true. But like so many people – business pros to athletes to soccer moms – his lust for winning blinded his perception of right and wrong. Lance Armstrong, the cancer community’s hero and America’s greatest athlete, became an aficionado of curating lies. 

The media and general public have gone to great efforts to punish our hero.  Armstrong has lost endorsements, titles, sponsorships, and his place of leadership at the foundation, Livestrong, which he created in support of cancer survivors.  Armstrong is the epitome of “loss” at this point in his life – both personally and professionally.

Before You Accuse Lance, Take a Look at Yourself

 What I have found amazing is how quickly we criticize him and point the collective accusing finger at his failures and fallacious behavior. Don’t get me wrong, I see his failures.  I watched the interview and saw how he split hairs between something being right or wrong based on a statement that was 10% false; he chose to focus on the 90% of truth, rather than facing the falsehood.

His confessions contain a mixed message of shame and humbled desire to, at least, have the opportunity to enter back into the world of sports once again.  Even so, Lance (as many of us chose to refer to him, casually, as if he were a close personal friend) is completely aware of where and how everything went wrong. 

What I saw, when I watched the interview, was a man whose self-identity has been built around performance-based love.  If I had to guess, his cancer victory was also built around his athletic prowess and vise-versa.  The loss of his testicle, and daily battle he waged within himself to heal the emotional scars of cancer, created a sense of brokenness.  I believe he thought becoming the greatest champion in his chosen sport would finally heal that brokenness, but, alas, this elusive grail would never come to pass.

 

Broken With the Whole World Watching

I understand the feeling of brokenness because of disease.  A broken body is hard to conceal because you can’t hide it from the world, like you can a broken heart.  A broken body can eventually cause a broken spirit. Most of the outside world might not see how Armstrong could view his body as broken, but those who can felt his pain then and continue to feel it now.

Learning how to accept your body, given the limitations imposed by disease and whose failures are so publically aired would prove immensely challenging for the toughest of men. But great accomplishments, alone, cannot heal the deeper hurt caused by disease and personal failure – as in Armstrong’s case, the very public failure of his marriage a few years back. How wrong we are when we believe accomplishments heal a broken heart.  Only self-reflection, spiritual growth, leading to ruthless self-awareness and acceptance of failures, both the physical and emotional ones can lead to true healing.  On top of that, you’ve got to have a profound desire to find a new path to love – one that springs from an internal fount, not external adoration from the public.   

So, when you start to judge the Lance(s) of the world, then why not instead stop to figure out what shared scars you have? Perhaps you don’t compensate for your self-doubts and your fears of facing your limitations in the same way, but I bet you do it in some way, shape, or form.

When the great and mighty fall, their falls are more painful than ours because theirs are excruciatingly public. How about if, for once, we tried to lift them up versus destroy them even further. Why not judge the sin, holding sinners accountable for their actions, but step in to heal their hearts?

A Father’s Journey Through The Scars of CDH: Part 3

Read “A Father’s Journey Through The Scars of CDH: Part 1 & Part 2

Emotional scar #5

Surgery day.   We knew June 21 was going to be a long day since there was really no way to tell how severe our son’s birth defect was until his surgeon “got in there”.  All we knew was that his doctors thought he was doing very well otherwise they wouldn’t have scheduled surgery so soon.  After 2.5 hours, his surgeon comes into the waiting room to speak to us.  “Well your son is a miracle with a great name.  His defect was much worse than any of us anticipated.  He actually had no diaphragm at all.  But he is doing amazing and actually needs very little oxygen support already.” 

We still had a long road ahead of us.  But we had crossed our first major hurdle.  Our son has a nice, character building scar that was at least 6-8 inches across his abdomen.  But there were a few more emotional scars to be had during our son’s 29 day NICU stay (which is relatively short by CDH standards). 

For example, the 2 am call with the neonatologist discussing next steps because Aidan was having trouble breathing just 10 hours after being extubated.  The first choice was re-intubation followed by introducing Methadone to his cocktail of drugs.  The doctors wanted to avoid having to do surgery to put our son on ECMO, so that was being considered only as a last resort.

There is no cure for CDH as it is not a disease.  CDH can be a lifelong struggle for some and just when you think you are past the worst…it rears its ugly head again.  All families affected by CDH live in constant fear of many things (i.e., inability to gain weight, weak immune systems, etc.) but one thing in particular – RE-HERNIATION.  This can be life threatening especially at a young age.  It is not uncommon for a child to re-herniate numerous times before the age of 5.  The physical and emotional scars associated with each surgery and hospital stay are hard to comprehend for anyone who hasn’t experienced it.

My family is extremely lucky and blessed.  With all the scars that we’ve developed as a result of CDH, Aidan is still doing amazingly well.  As I mentioned, I am a firm believer that everything happens for a reason or at least shapes the person who you become.  So how has congenital diaphragmatic hernia shaped the person that I am today? 

I would never say that I love my son more than anybody else loves their child.  But I sure appreciate the little things more than many.   My perspective on what it means to be strong and a fighter has changed dramatically as well. 

I have made it my mission to do my part so that no one has to go through what my wife and I did alone.  Our family didn’t really “get it”, and we didn’t know anybody else who had gone through the same thing (until after our son came home).  I have become the Illinois and Wisconsin Rep for CHERUBS.  CHERUBS is the first and largest organization devoted to raising awareness of CDH, providing support to families, and encouraging much needed research of CDH.  I am also one of the co-chairs of the CHERUBS Parent Advisory Board.  As the Illinois rep, I organize a walk every April 19 to commemorate the International Day of CDH Awareness and this past October I organized the first ever CHERUBS Kids carnival.  What CDH needs more than anything is research.  But I figure if I keep doing my part to raise awareness, the research will eventually follow.  And with research, maybe just maybe there won’t be so many physical and emotional scars caused by this life-threatening birth defect in the future. 

 

Neil was born in the NW suburbs of Chicago and still lives there today with his wife and now 2.5 year old miracle boy. Neil has a Masters in Integrated Marketing Communications from Northwestern and has been practicing integrated marketing for over 15 years. Back in 2001, when they were still dating, Neil helped his now wife start Creative Celebrations. This children’s party planning and entertainment company is still in business today.

Neil can be found: Twitter at @Neil_Rubenstein or via email at nrubenstein@cherubs-cdh.org. To learn more about CDH and everything that is currently being done to help generate funding for research visit the Cherubs website at www.cherubs-cdh.org or on Facebook atwww.facebook.com/cdhsupport.

A Father’s Journey Through the Scars of CDH: Part 2

Read part 1 of Neil Rubenstein’s “A Father’s Journey Through The Scars of CDH”

Emotional scar #2

We had decided that once our son was stabilized, he would be transferred to another hospital just in case he needed to be put on an ECMO machine (a heart & lung bi-pass machine).  Only a handful of hospitals have this machine and we wanted to be prepared just in case before it became an emergency situation. 

So after a couple hours, our son was transported to another hospital 30 – 40 minutes away.  I left my wife to go check on my son 20 minutes later.  I have no memory of that car ride.  I am probably lucky to have made it to the other hospital without any incidents.  At this point, we really didn’t know anything about our son.  How severe was his birth defect?  How much support would he need?  When would his corrective surgery be scheduled?  How long would his hospital stay be?  Would he even survive?  Of the 4 children born on June 17, 2010 with CDH in the US, would he be one of the two to survive?  Or would he be part of the 50% who do not make it?

I get to the hospital and am directed to the NICU and my son’s room.  It’s a giant room with at least 8 other children in it.  Once I scrubbed in, I was able to go to my son’s bedside.  I could barely see what he looked like with all the machines and tubes.  He looked so uncomfortable, and I was there all alone, completely helpless.

Emotional scar #3

Then I headed back to the hospital where my wife was.  This was my life (for the most part) for the next 3 days.  I would head over to one hospital in the morning to see my wife and then to the other hospital in the afternoon to see my son and then back to see my wife in the evening.  My wife was so upset every time I arrived and left.  She hated not being able to be there for her son, and I hated leaving her alone for so much of the day.

Emotional scar #4

Our son seemed to be doing so well, that his surgery to repair his hernia was scheduled for June 21…when he was only 4 days old.  My wife wasn’t even scheduled to be released until that evening, so I had to get her out of the hospital a day early on June 20.  She was barely able to walk, but we rushed to the hospital where our son was.  My wife wanted to see Aidan at least one more time before surgery.  The expression on my wife’s face when she saw all the machines and our son up close for what was basically the first time was very difficult for me to handle.  She broke down right away.  His bed was so high she couldn’t even reach him and was so upset because all she wanted to do was touch him.

 

 

Come back tomorrow for the final installment of “A Father’s Journey Through The Scars of CDH: Part 3″

 

Neil was born in the NW suburbs of Chicago and still lives there today with his wife and now 2.5 year old miracle boy. Neil has a Masters in Integrated Marketing Communications from Northwestern and has been practicing integrated marketing for over 15 years. Back in 2001, when they were still dating, Neil helped his now wife start Creative Celebrations. This children’s party planning and entertainment company is still in business today.

Neil can be found: Twitter at @Neil_Rubenstein or via email at nrubenstein@cherubs-cdh.org. To learn more about CDH and everything that is currently being done to help generate funding for research visit the Cherubs website at www.cherubs-cdh.org or on Facebook atwww.facebook.com/cdhsupport.

A Father’s Journey Through the Scars of CDH: Part 1

The first thing that comes to mind when I think of a scar is the physical kind.  I think this is pretty typical.  In my case, it’s not surprising given that I’ve had my fair share of physical scars starting back when I was 13.  That was when I tore my ACL along with my meniscus.  I used to tell people that I was bitten by a shark since my scar was so large.  I then re-tore my meniscus as a freshman in college and severed the tendon in my bicep in my young 30’s which also resulted in a nice scar.  In my mind, the physical scars are just a part of me and help define who I am today.  I am a firm believer that I not only learn something from everyone whom I meet but from all the experiences that I’ve had thus far in life.       

However, no life experiences prepared me for the physical and emotional scars that I would get after learning about something called CDH or congenital diaphragmatic hernia.  CDH is a birth defect where the diaphragm fails to fully form while the baby is still in the womb.  There are a lot of potential complications that can result from this defect but the most common is under-developed lungs.  This happens because the abdominal organs slip through the hole (or hernia) in the diaphragm into the chest causing stress on the lungs which prevents them from developing properly.  This birth defect affects 1 in every 2500 births and there are 1,600 cases per year in the US (52,000 worldwide).  Over 700,000 have been diagnosed with CDH since 2000.  There is very little research on CDH and the survival rate is only 50%. 

I first heard about the three letters that would change my life when my wife was 37 weeks pregnant.   Her OB sent us to get a level 2 ultrasound because her amniotic fluid remained elevated which was not normal this late in the pregnancy.  She told us that 65% of the time elevated amniotic fluid doesn’t mean anything, but it was best to get it checked out.  So my wife was on the UT table and the nurse started the ultrasound.  She started to point out the organs, our son’s hair, and then stopped and said “excuse me” and proceeded to leave the room.  The doctor came into the room, spent 30 seconds looking at the ultrasound and told us our son had something called CDH and that she was “sorry to inform us that there is only a 50% survival rate.  Please collect yourselves and meet me in my office when you are ready.” 

Emotional scar #1

 

Neil & Amy Rubenstein found their calling when their son was diagnosed with CDH in-vitro.

Physical scars I can deal with.  How do you recover from being told after 37 weeks of what was a picture perfect pregnancy that your son (who took 5 years to get here) only has a 50% chance of survival?  My wife completely lost it, and I did everything in my power to control myself so that at least one of us didn’t completely fall to pieces.  I don’t know how I did it as just thinking back to that day (in May 2010) gets me choked up.   Every time I tell our story to a group of people, I have a little trouble at this part of our story.  It’s an emotional scar that I am learning to deal with but I will never, ever get over.  May 24, 2010 was absolutely the worst day of my life. 

But the 3 weeks that followed were not much better.  Looking back, they are pretty much a blur to me.  We had to rush to meet new doctors, surgeons, tour hospitals and ultimately decide how and where we wanted our son to be cared for.  We had to make potential life or death decisions for our son (who we had never met) due to a birth defect we knew virtually nothing about. 

June 17, 2010.  Father’s Day and the day of our scheduled C-section.   We knew our son had a left sided diaphragmatic hernia (the more common kind).  And we knew that his stomach had pushed his heart to the wrong side of his body and that at least some of his intestines were in his chest.  Other than that, we had to wait until our son was born for the doctors to determine the best course of action.  Would this be my first and worst Father’s Day imaginable?  Once again I did my best to hold it together while my wife was prepped for surgery. 

I was finally allowed into the OR, our son was delivered, intubated, and then wheeled away to the NICU.  I am not sure I will ever get over seeing the expression on my wife’s face when our son was wheeled away to the NICU after only seeing him for less than a minute.  In fact, I had to actually fight with the doctors for her to get that much time.

Tomorrow read part 2 of A Father’s Journey Through Scars of CDH: Scars 2-5

 

Neil was born in the NW suburbs of Chicago and still lives there today with his wife and now 2.5 year old miracle boy. Neil has a Masters in Integrated Marketing Communications from Northwestern and has been practicing integrated marketing for over 15 years. Back in 2001, when they were still dating, Neil helped his now wife start Creative Celebrations. This children’s party planning and entertainment company is still in business today.

Neil can be found: Twitter at @Neil_Rubenstein or via email at nrubenstein@cherubs-cdh.org. To learn more about CDH and everything that is currently being done to help generate funding for research visit the Cherubs website at www.cherubs-cdh.org or on Facebook atwww.facebook.com/cdhsupport.

What to Expect With What They Were Not Expecting

Earlier this week, my life took a bit different turn than I neither expected nor wanted. Recently, I’ve started to think about family planning.  Yes, it’s a little late because I’m 37, but to be honest, I always thought that I would have Mr. Right picked out by now.  During my annual appointment, I requested a litany of tests from the doctor that would tell me how much time I had left on my ticking biological clock. 

The test results came back giving me far worse news than I had ever imagined. I was out of time and out of eggs.  Over the past few days, I have found myself sitting in the closet consumed with anger and now grief.  I have cried, cussed and wanted to punch someone’s face and now I am at the place of acceptance — I hope. 

Over the past few days, I have told a few friends and family members whose support means a lot to me.  I have gotten a wide range of responses.  Some of them have made me cry and some have made me laugh out loud and love that person even more.  Through all this, I have come to realize that most people do not always understand what to say when someone delivers news that can break your heart. 

News of cancer, loss of an organ, loss of the ability to have a child, loss of a marriage or anything else where anger and grief are common responses often leave people at a loss regarding how to help.  So, I thought as my blog this week (since I have failed so miserably lately with writing anything), I would give those friends and loved ones searching for the right words a few insights on the dos and don’ts of how to respond (at least to me and, I wager, many others as well). 

 

What not to say and do:

It is in God’s plan If the person who just learned of their disease or loss believes at all in God,  then there’s a great chance they believe that the change in their life has something to do with a Greater Plan. But that still doesn’t make it any easier to cope with  in the anger stage.  Anger represents an acceptable stage of working through and dealing with a major (typically negative) life change  and it’s healthy and good.  To hear that it is part of some greater plan invalidates and attempts to diminish the person’s  anger and may actually end up alienating that person from God. 

Compare the other person’s problems with yours or anyone else’s.  When someone is dealing with a  loss, whether it’s loss of  health, an organ, the ability to walk, or anything else that constitutes a major life change, the individual  needs validation and a the gift of a good listener. The change represents the necessity to greatly adjust previous  life goals or and cherished desires.  It’s a slap in the face to compare your life, or anyone else’s, to his or her circumstances.  We all have different experiences and if you really want to understand the pain of the news and offer comfort in some way,  then you would realize there really are no words that need to be said.

Yes, if someone in the news recently lost a child due to a violent crime; then we all hurt…anyone with a heart hurts.   Once again, do not bring up tragic incidences like this in an attempt to show the person how “lucky” they really are.  It’s like comparing  apples to oranges.  Pain hurts and it hurts the same regardless of the circumstances. Validate your friend’s pain by listening and offering other appropriate comforts (i.e. prepare dinners for a week, prayer, a quiet hug).

Pointing out the shiny penny When someone feels pain, he or she  does not want you to point out the shiny penny, in other words, the blessing. That’s for later – much later.   Emotionally healthy people need and  want to work through their pain; they want to feel it deeply, so  they can move on as quickly as possible through the stages and to the place of acceptance.  Sometimes people get stuck in the pain place for a time or even a season. Trying to push them out of it before they’ve worked through it will only cause them to dig their heels in further.  So, in the moment of anger, your words of positivity may only  slow down the healthy progress to acceptance and drive someone deeper in denial.

Saying you understand When your friend has just heard that their child is dying; that  they are going blind; or that they have stage 3 cancer, you don’t understand unless you LITERALLY have gone through that same thing or  received  that particular diagnosis.  So stop saying that you do.  Don’t say anything at all.  Typically, when a friend divulges information like this, it’s  not a request for you to understand, but just a piece of information they’ve shared with you — a friend.  Don’t try to do more than you are capable of doing. 

 

So, what things should you say and do in order to comfort a friend in pain?

Laughter really is the best medicine Yes, I hate to say that after your friend has told you their news and cried their eyes out to you; then maybe a good self-deprecating joke is in order.  When I found out I was infertile, I cried to a friend of mine who I knew would understand the sadness that I felt.  I knew she would not try to make me feel better about it, but would know that I needed to talk it out and cry over my anger.  What I did not expect to hear was, “Listen, it could be worse, you could have an awful case of shingles like I do in my pants on my butt crack and lady parts right now.  You could have an Angry Beaver like I do or at least that is what my husband says.” I nearly fell off my sofa laughing.  Why is that?  Because she wasn’t trying to make it any less painful than it was, but just trying to show me that life is just what it is…life… and that I would be ok. 

 Acknowledgement You likely don’t know what to say, so just say what feels the least intrusive.  Tell your friend you’re sorry, you hurt for them, and you love them and leave it at that.  They probably don’t want to hear that you will pray for them unless they ask you to. They certainly don’t want to hear that it will all work out in the end or that time will heal wounds.  They just want to hear that you love them because most likely, they are feeling broken in their sadness. 

Let it be Your friend, whoever just told you of their pain, usually just wants to be in that moment So just let it be without reservation because moving through it at his or her own pace is the only path to healing.

Most of all, treat the person as you would want to be treated — completely loved and celebrated despite this new life change. Know in your heart that, at some point,  they will return to the happy person that you love being around.  And don’t forget, scars r sexy!

National Cookie Day Giveaway

 

Every day represents an incredible opportunity to celebrate life; and here at RockScar we LOVE to celebrate with double stuffed cookies! Today is National Cookie Day and we want to celebrate your life story by sending you a batch of hot, yummy gourmet cookies to celebrate your life. Just sign up on our mailing list (you can do that on our home page top right corner) and we’ll enter you in a drawing to win some cookies. Then sit back at wait for the results. If you’re the lucky winner, we’ll deliver some delicious chocolate chip deligh (or your choice) t to your house!