The Power of a Smile

Lately, no matter where I am or what I’m doing, somewhere in the back of my mind I am constantly aware that December 16^th is fast approaching….

It’s almost been a year.  A year since one of the most awful days of my life.  A year since the last time I saw and spoke to my Dad. 

A year of missing him.  A year of learning/trying to accept.  A year of questioning how we could have done this differently.  A year of trying my best to spin a very negative situation in a positive way.  A year of trying to come to terms with our reality.  A year of trying to comfort my mother and figure out ways to give her her life back.  A year of trying to convince her he’s not coming back and who he is today is not his fault.  A year of watching my parents fall apart.  A year of watching them hurt.

The thing is, it took me about a year, but I did finally accept that my dad was not coming back.  I accepted that my dad and who he was, died sometime between the hours of 8:30am and 2:30pm on Friday, December 16^th of 2011.  Deep down in my heart, I knew there was a reason it was so unbearably heart wrenching to say goodbye to him before they took him to the OR that day.  I knew there was a reason for the dread with which I anticipated that day.

They may have fixed my father’s heart, but they damaged his brain.  They damaged his brain beyond repair and the essence of my dad was lost on that day, on that operating table.  Just like that, he was gone.  He now lives inside of the body of a man whose heart functions well, but everything else seems to be broken, including and saddest of all, his spirit.

I’ve spent countless hours upon hours talking with my mom about this and quite honestly there is a part of all of us I think, that would have much rather have lived in ignorant bliss.  I think we would have preferred to have two good years with my dad than to suffer and watch him suffer the way we all have and continue to do.  I think if we knew then what we know now, we may have opted to leave his broken heart alone and enjoyed every second of his healthy brain and unbroken spirit.  Hindsight is always 20/20.

Then I think, if God could have come down and given me the option, I would never have opted to let him go - physically.  Every time I hear his voice, watch him struggle to get it out and articulate whatever it is he’s trying to say.  Every time I watch him give up because doing everything is such a struggle, I think to myself...”you know, it infuriates me to watch all of this, but I’m sure if you were really physically gone, I’d give anything to have you here and be infuriated by your struggle or your decision to give up.”  He gives up often, because he says it just too hard, and quite frankly sometimes he’s just too angry to keep trying.  If he were really gone, and I had the option, I’d probably opt for what we are living through now...maybe.

To be fair, while I wholeheartedly resent the absence of my father and how dramatically our lives have changed - I also appreciate the life perspective this experience has given me.  I am grateful to have not only realized but to have truly embraced how fragile life really is.  This experience has definitely shaken me to my core, but I’m pretty sure it has also changed who I am in positive ways.  I may get lost in my thoughts often.  I may have a hard time finding the positive in said thoughts.  But it’s extremely gratifying to know, really know, that I am a lot stronger than I’d previously thought.  There are times that I look at my mom and dad, and how tough their situation really is, and I’m proud of myself for not getting lost in that.  I’m proud that I’m able to find it within my self to take a deep breath and be brave.  I keep on keepin’ on even when so much of what’s so deeply important to me is falling apart.  I’m proud of myself for learning how to compartmentalize my feelings and my emotions so not to bring those around me down, or to make them suffer.  Somehow, I’ve figured out a way to convince myself that while none of this is OK, I can’t spend my life grieving for how much I miss my dad and the way he used to be.  At least I try, I try really hard.  I give myself moments where I allow myself to feel the complete destruction inside my soul, but then I remember that I am strong enough to shut that off.  I take a deep breath and move on to the next thing, and sometimes, maybe even crack a smile.

Good Days and Bad Days...

If this experience had a name, it would be called “Good Days and Bad Days.”  The good days are comprised of telling yourself, and believing, that everything is going to be OK.  The bad days, well the bad days are everything in between.  I’ve been spending the past couple of weeks telling myself that everything will be OK.  The truth is, I’m sure that somehow it will be “OK.”  The truth is, regardless of the outcome of this situation, one way or the other, it eventually has to be OK.  Life always finds a way to move on regardless of the wreckage it leaves behind.  Life can be heartless that way.  It wages war on you and demands that you get up, and keep on going on, regardless of the damage it caused you or those you love.

                                                                                                                       

The past couple of days have not been good days.  They’ve been filled with a whole lot of what’s found “in between.”  I was sitting on the couch opposite my Dad yesterday, simmering in a moment of frustration with him.  Then I watched as my mother, or as she’s better known these days, “the caretaker” brought him his sneakers and his socks.  She told him to put them on so he’d be ready for therapy.  So my Dad, Mr. No One is the Boss of me, Mr. I Do What I Want When I Want  proceeded to take on the enormous challenge of putting on his socks, putting on his sneakers and tying said sneakers.  Never in my life did I want more to instantaneously become invisible.  Invisible so that he couldn’t see my pain, invisible so that I could openly feel it.  Forty five minutes later I had the conversation that I so often have with myself.  He’s here, he’s alive, he survived.  I reminded myself that I have to be strong, that I can’t cry.  So often times I smile.  Not because it’s genuine, but I smile in honor of those people who’ve lost their parent, or their child, or their spouse.  I smile in honor of them, because after all, my Dad is still here.  But it’s so hard to smile and to mean it, because watching my Dad tremble and struggle, so much, to put on a SOCK - breaks my heart.  But at the end of the day I think, “how in the hell do I have the right to shed a tear when my Dad is still here.”

See that’s the thing though…he’s not.

My Dad was a very, very proud, independent man.  He did as he pleased, when he pleased, and please, do not think to question him.  He was private, he wasn’t one to provide much detail in regard to his day.  The irony is never lost on me.  Mister all of these things, is now the opposite of each and every one.  There’s not a single thing that he can do for himself by himself - anymore.  I now handle all of his formerly private finances, my mother, brother, husband or I now handle all of his needs, wants, etc.  We dictate when he gets up, goes to bed, naps, eats, stays in the house, goes outside.  He has absolute zero control over the majority of the things that happen it his day.  To think about this exhausts me.  Outside of his quirks and idiosyncrasies, I can’t think of a single thing about him that is the same.

My mom and I decided it would be a good idea to get him out of the house today.   She got him ready to go and again, I found us in the exact same position as yesterday.  Only today, I was watching him put on his watch.  Sounds so simple but nothing could be further from the truth.  I sat and I watched and no matter how hard I wished I was invisible again, no matter how much I reminded myself I didn’t have the right to cry…

I was looking at his scar tonight.  It infuriated me to see how much it’s faded.  You can barely see it now.  How dare that scar fade like that, the nerve of that scar.  That scar changed everything, that scar took my father from me and now you can barely see it, like it was never even there.  The audacity of that scar to pretend like it wasn’t responsible.  I pretend, I pretend all the time too.  People ask how my Dad is and I say he’s OK.  People ask how my mom is doing and I say she’s OK.  It’s all fading just like that scar, but the reality is so the opposite.  As opposite as who my dad is today.  While that god-forsaken scar sits there all “it wasn’t me” - our scars are gaping wide open bleeding at the seams.  We sit there day in and day out putting any rag we can find on our scar to stop the bleeding, and so that other people don’t see.  While the master scar sits pretty, like it’s barely even there.  Completely oblivious to the emotional pain that lives inside the place it chose to be.  The nerve of that scar.  The nerve.

So please, may all of those who buried a piece of their heart forgive me, I cry.  I can’t help it.  It shouldn’t take so long or be so hard to put on your sneakers or your watch.  You shouldn’t have to hand your Private financial matters over to your daughter.  You should be able to enjoy the retirement that you so longed for after working 56 long years.  Your wife/mom shouldn’t have to lose her job and her identity.  The list goes on…and so I cry, and I think I am the only one who hates that beautifully faded scar as much as I do.

Silver Lining

My husband left to go pick up my daughter yesterday, and I sat at the computer doing what I find myself doing so often these days.  Reading and learning about heart surgery and strokes.  I happened to be reading the latest post on my favorite heart blog about the importance of attitude and keeping a positive one.  Suddenly I heard an all too familiar voice and one of my favorite sounds.  I ran to the window and caught a sight that instantly took my breath away.  So simple, yet so beautiful.  It was my husband and my little girl walking home from school.  She was deliriously happy riding her Tinkerbell scooter and he was wearing her Tinkerbell backpack. In that instant I was grateful.  So much so that it brought tears to my eyes.  I thought, thank you God.  No matter what else is happening in my life, thank you.  Thank you for that guy that is not too proud or too anything to wear that purple Tinkerbell backpack.  Thank you for that happy little girl on that scooter, and thank you for the other little girl that naps peacefully in her bed.  In that instant I realized that no matter how much seems wrong, all is right in my world.  So I hurt, everyone hurts.  My Dad is a little broken, but he’s still here.  My husband is amazing and my girls are healthy and happy.  Really, what else can I ask for?

It was just one of those moments where all of the planets quickly aligned and I was fortunate enough to have a moment of clarity.

I have to be thankful and I have to be hopeful.  I have to be Patient.  I have to keep hoping that my Dad’s brain continues to heal and figure out ways to work efficiently and effectively despite whatever disruptions there may have been.  I have to be patient and realize that the brain is the most delicate and complex organ of the human body and that this will take time, lots and lots of time.  But most importantly, I have to remain thankful.  After all, I have so very much to be thankful for. 

Then I realized, this gray cloud does have a silver lining after all…

Shades of My Father

So – who ever knew that a stroke was a risk of this earth shattering surgery?  Not me.  I thought that if my dad “woke up” from this slaughtering, we were past the worst of it.  When I prayed, I prayed that he would please, please, wake up.  I prayed that he would Live.  I prayed for God to allow him to Survive.  Not once in my wildest dreams did I consider the fact that while my Dad would survive, I would lose him anyway….

I knew something was “off” when I watched him try to touch his face to move the oxygen.  Scratch that, I knew something was “off” when he couldn’t look at me.  After the surgery, the Surgeon came to tell us that while it was a complicated surgery, my dad was OK.  He explained all the mortifying details and why he would be “out” for the next several hours.  He said in a couple of hours we could go in to see him anyway.

A couple of hours passed and a nurse came to get us.  Before my eyes was The Worst Part of this Nightmare.  My Dad was hooked up to every a machine in existence, covered to his neck by what looked liked a full body floating device.  This thing mechanically went up and down.  The sound was just like a pump in a pool.  Inhale.  Exhale.  I got dizzy.  I held on to the foot of the bed as tears started stinging my eyes.  I held on for dear life, for my Father’s Life.  My Dad was on life support.  His body was being kept alive by machines.  We were told he was in very critical condition but that “this” is what “they” were used to.  “This” was not what “I” was used to.  “This” was not something I ever wanted, nor expected to see.  “This” was absurd, and all I wanted to know was where the F*ck my Dad was.  What was he thinking, what was he feeling, and when the hell was he going to wake up and talk to me?!

The next morning when I called my mom she screamed “He’s AWAKE.  He’s talking to me, and he’s awake.  Daddy’s OK.”  I cried almost as hard as I did after I left him under the floating device with the swimming pool pump.  I thanked God with everything inside of me for allowing my Dad to wake up.  He survived, I could breathe again.  Not well, because they told us the first 24 hrs were critical, but at least I only had a few more to go.  I rushed to get ready and Literally Skipped to the car.  I couldn’t Wait to see my Dad.  He made it, We made it.  I walked into the room and that was when my world came to a screeching halt.  My Dad, could barely open his eyes, his voice was barely audible.  He could talk to me, if that’s what you want to call it, but he couldn’t look at me, and could barely see me.  As I tried to wiggle free from the one hundred ton whale that was suddenly sitting on my chest, I asked the nurse, Jordan, if this was normal.  He looked at me knowingly and said “I know, this all very overwhelming.  There are so many machines and tubes, but this is what we’re used to.  This is what we do.”  I said “OK.”  Then, Jordan “tried” to hand my dad a medicine cup and my dad’s arm could barely move and hand could not grasp it.  The next thing I knew I was on the floor being held by who knows who trying desperately to vomit this nightmare out of my body.  No such luck.

I later learned that this part wasn’t “normal.”  I much later learned my Dad had had a stroke.  <Insert Applause>  Talk about adding insult to injury.  So, it wasn’t enough that someone had to cut him in half, disconnect his heart, and fix it.  Now, we had to deal with a whole slew of other issues and medical “foreign language.”  Embolism and gases and bypass and bullsh*t.  Was this a joke?  Hadn’t we suffered enough?  Really? 

But, I thought that if he survived - we won?

Far from it.  The hours passed and hours turned in days and days into weeks and weeks into a month.  My dad still can’t walk, he still sounds like he’s drunk, he still feels like he’s drunk and he still can’t see clearly.  He still doesn’t Look At Me when we talk, he doesn’t remember the house he’s lived in for the past 12 years, and he doesn’t know the difference between yesterday and last week.

Never.  In A Million Years.  Did I expect for my Dad to survive, but to lose him anyway.

Now when I walk into what he thinks is “where he lives” - the rehabilitation center - my heart drops every time as he searches for the position in which to put his head and his eyes so that he could see me.  Every. Single. Time.  I sit there for however long it takes to catch a glimpse of the man that walked into the hospital with me on Wednesday, December 15^th.  I search and I wait but I get only glimpses.  Pieces.  Shades…of the man I once knew to be my Dad.

I miss him.  More than words could ever say.           

I don’t dare ask.  I don’t dare even allow myself to Think why me?  Why us?  I am terrified of thinking this thought because while a part of me is DEVASTATED, I am aware of how lucky I am to have two beautifully healthy daughters.  I am depleted by the fact that, if this is the cross I have to bare in my life - I’ll take this one.  As opposed to, Ever living in a world where either of my children suffer.  But, it doesn’t change the fact that while I sit there in search for shades of my father, I hurt.  I hurt, More than I’ve ever hurt before.

What I Learned

On Monday evening November 21^st  2011 I learned that my Father had something called an Aortic Aneurism most likely caused by a murmur.  A murmur is a leaky valve that caused his heart to pump almost twice the volume of blood it was supposed to.  This caused the Aorta, the heart’s main artery, to dilate or stretch out to the point where it was in danger of tearing.  Had this happened, my Father would have died.  I learned that this is what the late John Ritter died of.  As did my dear friend Tony, may he rest in peace.  I learned that this condition is usually without symptom and by the time symptoms present themselves, it is too late.  I learned that we were Very Lucky to find this, had we not, my Dad would have been gone within the next 1-2 years.

What I learned next was the following-

I learned that six hours can feel like six hundred years

I learned what it feels like to have Nothing else to hold onto other than faith, prayer, more prayers, and everybody else’s prayers

I learned that the heart and the lungs can be stopped and a body kept alive

I learned that the human body’s temperature can be brought down to 59 degrees

I learned that the entire body’s blood content can be put on bypass and filtered through a man-made machine

I learned what very critical condition is

I learned that Life is so very fragile

I learned that a machine could beat your heart and breathe for you

I learned what that actually looks like, unfortunately

I learned that I do have the ability to not pass out when I convince myself to accept a reality - and that I do not have the ability not to pass out when the reality is too much for me to bare

I learned what a CSICU looks like

I learned what a person looks like with tubes coming out of everywhere

I learned what it is to truly Love someone

I learned that I am not the reason my mother lives and breathes, her husband is

I learned that my father can not exist without my mother and vice a versa

I learned that love is not romance.  Love is cleaning, wiping, bathing, flossing, brushing and feeding someone when they can not do it for themselves

I learned that being able to do all of the above is a blessing and not something to be taken for granted

I learned that it is a privilege and an honor to watch the two people who gave me life, love each other in this way

I learned that God works through people – Surgeons, Doctors, Nurses, Scientists, medical Engineers

I learned that a stroke is a risk of open heart surgery

I learned that my daughters are Special little people not just because they are mine

I learned that Isabella is an incredibly brave and compassionate little girl and that she loves her Abuelo endlessly

I learned that Ariana is more patient than I ever thought possible spending entire days in a hospital lounge

I learned despair

I learned what if feels like to cry so hard that it brings you to your knees

I learned what a woman looks like moments after losing her husband of 42 years

I learned what it is to feel destroyed on the inside and blessed at the same time because my mother did not lose her husband

I learned that you never truly know how deeply you love someone until you are faced with the reality of possibly losing them

I learned how blessed I am for that fact that whenever my Father’s or my time is up on this Earth I will have already said all the things I ever wanted to say to him – many of us never have that opportunity

I learned that people’s imperfections do not make them imperfect

I learned that I am capable of forgiveness

I learned how terrifying and depleting it is to travel to Hell and back

I learned what it feels like to have a nightmare while you are Not sleeping

I learned that people mean as they Do, and not as they say

I learned that if you really want to help, you just do it, you don’t ask if or how you should

I learned what an integral part of my husband and I, my parents are

I learned what it feels like for us to be lonely

I learned what it’s like to not have a Christmas or New Year’s

I learned how heart breaking it feels for my children not to have a merry Christmas or a happy New Year’s at a time when in fact, they deserved it the Most

I learned what it’s like to have a birthday and not a Happy Birthday

I learned that the ICU, hospital, and rehabilitation center are no place to be on any of the above occasions

I learned what it is to meet a real life Angel in the form of an ICU Nurse

I learned that nine days in the ICU is an eternity

I learned that there are so many people in this world that love and care about my dad and they crawled out of the woodwork to show it

I learned that some bonds between people are forever no matter how much life gets in the way

I learned that the grandest expression of thoughtfulness can come in the form of  “buñelos and natilla” in a paper bag, on Christmas Eve, in a hospital room

I learned that another person’s prayer for someone you love is a Gift

I learned that the man I married loves my father like his own

I learned this same man loves me more than I thought possible

I learned what circulatory arrest is

I learned what a gas embolism is

I learned what my father looks like when he can’t see, or move, or talk

I learned how difficult and exhausting it is to learn to move, and start to see and talk again

I learned what post operative psychosis is

I learned what my dad looks like when he is scared and lost

I learned that taking care of your body and getting regular check ups is important

I learned so many valuable things, and so many things that I never wanted to learn

But the most important thing of all, that I learned - is that you never know how truly strong you are until it is absolutely the Only choice you have.

I learned that I’m pretty f'ing Strong and that because of this, I am forever changed.

As you can imagine, my scars from this experience are still very raw and in the early stages of healing.  Writing this, was therapeutic and for that I am grateful.  A lot of the “things I learned” are incredibly intimate and personal.  But sharing these thoughts is important to me because I believe there are many important lessons to be learned from this experience.  I feel comforted by that fact that if just one lesson is learned, what my family has gone through is not in vain.

Erika M. Velez

My dad is 68yrs Old

Dr. Jock Nash McCullough saved him