Below the Surface

It's been over 6 months since my precious son passed away.  6 months since I last held him, kissed him, seen his smile, heard his giggle...
And I am so far from okay, I don't even remember what it's like to be alright. Behind my smile, my entire being is filled with sorrow and heartache.  A huge part of my life is missing.  Carter was my first child; life as I knew it, was encapsulated in his every move.  I planned my entire life around his.  When I look back at those weeks before his passing, I am slammed to the ground in pain.  I find myself panicking and sobbing if I allow myself to go there.  I have no idea how I got through those days.  I spent 40 weeks planning for his arrival into this world.  Creating a nursery, attending checkup's to make sure he was growing properly and reading countless articles on motherhood and how to take care of my newborn baby.  I studied the "What to expect when expecting" book as if my life depended on it's recommendations.  I wanted everything to be just right for my son.  No matter how much I did right, everything went wrong.  My baby was born so beautiful and perfect; yet so many things were wrong.  He was sick.  He had to fight so hard to do everything.  And as his mommy, so did I.  I would have searched the world high and low to find something that could save my child.  But no matter how hard we fought, we just couldn't stop the inevitable.  When doctors told us that they couldn't do anything more for him and it was no longer fair to keep intervening...and ultimately, that our son was dying, I jumped into action yet again.  But this time it wasn't in search for recommendations or easy stuff.  It was to meet with the funeral home, cemetery and pastor to discuss our son's funeral and burial.  We planned our final goodbyes weeks before he took his last breathes.  I look back and can't believe I had the strength to do this.  I have no idea how my heart kept beating and my feet kept moving forward.  I can still see every detail of that day when his father and I sat down with the funeral director and picked out his casket, announcements, floral arrangements and colorful sharpies.  I can still remember the exact path we took at the cemetery as we looked at available plots and decided on the perfect spot under the pine tree over looking the pond as if we were just looking for a good spot to camp out.  As if that was normal.  It sounds absolutely absurd that we did these things before our son had died, but to us, it was just as important as choosing his nursery theme and going home outfit.  Only this time, we chose what he would wear for his funeral and for the rest of eternity.  I still can't walk near the boys section at stores or talk about super heroes.  I can't do Christmas shopping.  I can't look at certain pictures.  I can't wrap my mind around the fact that he is gone.  To protect myself from this torturous pain, I shut down.  I shut it off.  I don't think about any of this. Grief for me these days is survival.  I am breathing, I am living.  But I am numb.  I am doing my very best to get through the days one minute at a time.  At any given moment, something might come to mind that stops me in my tracks.  I burst into tears at the sight or mention of something that forces memories to the surface.  I work.  I work the craziest hours and leave myself little time to think.  This is how I survive.  I am struggling to reach out for counseling or support groups because I know these things will force me to stop running.  They will ask me to talk about the truth.  They will make me strip away all of the layers to what lies beneath the surface.  I am terrified it will hurt too much.  I am afraid if I break, that I will shatter.  So, just like I was doing a few months ago, I am still running.  It's what I know how to do best.  I don't think there is such thing as a "normal" way to grieve the loss of a child, but for now...I will just stay where I am because it's working.  Running through the days as I curl into a ball in my mind. 

Stay with me, my angel...to infinity & beyond.

Navigating...to where?!

Grief. I've never had a loss like this in my 30 years.  I don't know how to grieve.  I don't know what's right or wrong.  I don't know if my life will ever resemble what most would consider "normal".  I find myself navigating through the days as though nothing is out of place.  I still wake up each morning and climb out of bed.  I still make plans.  I still answer "I'm okay" when asked how I am doing, even when I'm far from okay.  I smile and laugh at silly things around me, even when I feel guilty for finding humor in such a sad world.  I am asked why Carter died from people who never knew him or his 7 years of struggles and I answer in synchronized memory from words I've repeated 10,000 times.  But through my facade of being "okay", I am broken into a million pieces.  I find myself looking for signs everywhere that Carter is still near by.  I grasp on to every cloud that resembles wings and every scent that reminds me of him.  I still trick myself into thinking he's alive and tucked away somewhere safe where he will some day come home again.  Part of this game, involves not thinking too much.  I physically and intentionally remind myself not to go there when my thoughts start to wander to his last hours, last minutes and last breathes.  I run.  I keep running.  Some days I am good at this game.  I go to work and occupy my thoughts with what is right in front of me and that is it.  It's when people see his picture in my work badge and ask how old he is and how many children I have.  A very difficult question to answer.  I still cannot say his name or age in past tense...I cannot say I only have 2 children.  I cannot.  Those words grab me from the dimension thousands of miles away and the last 6 weeks comes flying to the ground faster than the sound barrier and I feel the floor shake below me.  I feel the sting of tears in my eyes and my chest tightens to the point that I cannot breath.  There's no way around the words, "my son died".  There's no lie that can make his heart beat again.  There's no wish that will ever make him come back.  As each day run into the next, I find myself feeling more sad and angry.  Through my uncertainty with grief, this is all I know.  This is where I am.  But one thing I do know in my mixed up mind, is that I want to talk about him.  I want to be asked about him.  I don't want to be asked if I am okay, because I will never be okay.  But ask me about him.  Keep his memory alive, because that is all I can do.  If I cry, just let me cry.  If I end up turning around and walking away, please don't feel bad.  The scariest part of grief for me, is the lack of control.  I'm used to always being in control of my emotions and this is the first time in my life...I am on the verge of disaster at all times.  Carter was my entire world for 8 years (womb time and all), so I am still trying to figure this out...who I am now.  So please bear with me as I try to figure this out.  Please don't mistake my silence or lack of responses for not caring or thinking of you...I just can't find the right words for most things right now.  I'm focusing a lot of my thoughts on defying grief.  It might not make sense, but none of this makes sense. 

I want to thank all of my family, friends, co-workers, hospice team, Lyle Torrant Center family, Mott family and everyone I've met along the way...for texting, messaging, calling, sending cards and flowers and lifting us up when we are falling.  Please bear with me.

I stand behind my words

 I wrote this blog on September 23rd, 2014 on my old blog page http://mitowarriorsmomma.blogspot.com/ and it is still one of my favorite blog posts yet.  It is so true for how I felt about raising my precious boy.  I have no regrets in the decisions I made in all areas of his life.  I will forever wish that I could have cured him and kept him with me forever, but wishful thinking is my worst enemy.  I can't change what has happened to him, but I promise to always keep his memory alive.  I will always be so thankful for the gift I was given


 I gave up a while ago, but not in a way that you would think.  Anyone who is not in our shoes, may not entirely understand but let me try to explain.  Giving up doesn't mean we have "given up'' in a sense.  When we tell people about our son's medical problems and how difficult it is to see him gain and lose all of his skills, a popular phrase we hear often is, "no one knows what Carter's future holds, miracles happen every day" or "doctors don't know everything".  And I totally 100% agree, but there's another side to this as well.  Have you ever wanted something so badly, that you forget to appreciate what you DO have?!  When Carter was a baby, I hoped so badly that he would catch up in development or start doing the things his therapists worked so hard on.  I spent most of my time wishing for something that wasn't there.  I cried for all the things I had dreamed about for my first child.  I wanted all of those mommy experiences that every mother imagines.  I wanted to take Carter to the park and watch him make friends, I wanted to share my favorite snacks and foods with him in hope that he would follow in my footsteps, I wished for the day that my husband could play sports with his only son.  And over those years, I neglected to appreciate the miracles in front of me.  The smiles and giggles that Carter had over the rare toys he enjoyed.  The glimpses of eye contact that we worked so hard on in speech therapy.  The negative test results for devastating disorders that doctors wanted to rule out.  I let all those things pass me up while I still held hope for bigger things.  Without even realizing I had given up, I did.  But something different happened that may seem contradictory.  I didn't lose hope nor did I feel defeated.  Instead I feel empowered, stronger and happier.  I celebrate all the little things and brag to my family and friends about Carter's favorite squishy ball.  I laugh and enjoy the funny faces Carter makes when he watches his sisters dance and sing.  I clap and applaud when Carter poops on the potty.  I feel triumphant when Carter has a pain free family vacation where he is happy the entire time.  I go on and on about the 12 ounces of pureed baby food that he has consumed twice a day for a month now.  Do I dwell on the what if's and possibilities that could happen at any time in regards to Carter's medical conditions?  Yes, every single day.  Do I always hope for a new cure or treatment that will help my child live a better and longer life?  Every moment of every day.  But I give up on wishing for something that isn't meant to be for my son.  And the most important part of this, is that I am OKAY with that.  Being okay with something I cannot control, was the hardest obstacle by far.  I believe that miracles sometimes create unrealistic expectations.  Miracles don't always mean a magic cure or over night phenomenon.  In my world, miracles are simply every little thing that my son does.  He is alive, he is happy and he is beautiful.  THOSE are true miracles.  So I beg of my family and friends, to understand when I say that I have given up and that you will understand and respect that I don't wish for perfection anymore.  I don't beg God to change to my child.  Would you want God to change your child and the gift you have been given?  My every day miracle goes by the name "Carter".

"I'm okay mommy"

Over the last 7 years, there have been days I thought were the hardest of my life.  The day I got Carter's official diagnosis, was a day I fell to my knees and cried...not because I didn't think I could handle it, but because I knew I couldn't handle losing my precious baby.  Mitochondrial Disease is almost a guarantee that a person will have a much shorter life and many struggles throughout. I decided that day, May 2nd, 2011 that I would fight.  I would fight as hard as I could to not only search for answers and treatment...but for quality of life in every single day.  Carter wasn't bound to a wheelchair, orthotics, a helmet, feeding tube or walkers.  I let him live life like a normal little boy...well, as normal as his little body allowed him to be.  I let him explore and do what he could IF he WANTED to.  And explore he did!  Carter learned to scoot on his bottom, pull to stand and cruise WITHOUT barriers and he did whatever we were doing.  Swimming, he did!  Sand in his toes, of course!  Tower of terror, absolutely!  Carter did it all.  Memories that are so sacred and cherished, more now that ever. 7 years.  Those 7 years were filled to the very brim with smiles, laughter and joy.  It almost felt like Carter was with us far longer than 7 years...he has been with me since the day I took my first breath 30 years ago.  He was a part of the delicate and intricate plan, long before I even knew I was destined to be his mother.  This I truly believe.

The last month was by far, the most heart breaking and devastating month of Carter's entire life.  On April 27th, all of Carter's specialists that we trusted, sat around a long table in a conference room and discussed what was happening and voted yes or no to a trach.  They also discussed quality of life in the saddest way.  After 45 minutes, they invited Josh and I to join them.  The hospice doctor started out by telling us that the vote cross the board, without hesitation, was NO trach.  It wouldn't prevent or change what was happening to Carter's body.  He could no longer swallow adequately and his lungs just weren't functioning well anymore.  His body, without a doubt was failing him.  They told us they counted his hospitalizations over the last 12 months and he was admitted to the PICU 12 times and half of those were intubations.  And it just wasn't fair to Carter anymore.  His body wasn't responding to sedatives as well anymore either.  It was time to stop intervening and let Carter be free of all medical interventions.  I had already went over and over and over in my mind and heart what I thought was happening and knew before they even told us...that this was coming.  I had said for a few months that Carter didn't have long left.  I knew his body was tired.  Through all of the intervening, I had always held up strong and rarely broke down.  Whatever it took to save my son, was okay with me.  But the last intubation, I just knew in my heart...enough was enough and wept as I held Carter's hand. I watched as his body fought and then went limp as they infused sedative after sedative to make him sleep so they could insert the breathing tube and hook him to a ventilator.  It just wasn't fair anymore.  At the end of the meeting, I had to walk out before I got sick.  I sobbed, hyperventilated and got sick.  Once I finally got back to the 10th floor and to Carter's bedside, I climbed into his bed and just held him.  I held on to him for dear life.  I sobbed and sobbed.  But when I cleared my eyes and looked at his face, he only smiled at me.  Smiled his beautiful, toothless smile and without a doubt, I knew he was telling me "it's okay mommy".  Carter did what Carter always does.  As we were feeling as though we were possibly making the wrong choices, he reassured us that we weren't.  I don't know how many times over his life, he grabbed for me and smiled...and in his own way said it was okay.

A week later, we decided to move Carter from Mott Children's Hospital to the Arbor Hospice home.  A decision I felt was right for us.  For several reasons.  Carter had already started to get sick again with fevers, low temps and pneumonia in his lower lungs.  And I already knew what my heart could handle.  I needed the help and support of the hospice staff as Carter's body started to get weaker and sicker.  I needed to be the one who walked away after he passed away rather than someone coming to take him away from me.  The same for all of his equipment that was so much a part of his life.  I refused to do anymore ambulance rides...I drove him myself.  Our last trip out of that hospital.  I made sure his room at the hospice home was ready before I took him over.  We practically moved in and made his room as homelike as possible.  In the couple of weeks he was there, we went for walks, went swimming at a friends pool, watched movies, listened to music, daddy played guitar, we laid together as a family on the pull out couch and made the most of every minute.
On May 19th, I woke up around 6:00 a.m. to the nurse saying she was getting some medicine for Carter because he was breathing a little harder.  I jumped right out of bed and joined Carter in his.  Throughout the morning, his breathing got worse and he wouldn't wake up.  I knew.  I knew this would be his last day with us.  I requested the music and massage therapist to come see him.  I told my grandma and aunt to bring the girls.  Josh got the guitar and played for him.  I never left his side.  Around 4:45 p.m. the wonderful massage therapist came and gave Carter the most tender, delicate massage as I held him in my arms in the recliner chair by the window.  I told the therapist how Carter had been laid on my chest when he took his first breath and I wanted him to be in my arms when he took his last.  At the end of his massage, I noticed that he wasn't breathing anymore...I waited a few seconds for breathes that never came.  I told Josh to run for the nurse.  When his nurse listened to his heart with her stethoscope, she said "his heart beat is getting weaker...I can't hear it anymore."  Sheer panic ripped through Josh and I.  I pulled Carter to my chest and held him tight as he went away.  Carter had heard me...he knew what my heart needed.  I needed him to be in my arms.  He gave me my last wish.  In his 7 years, Carter ALWAYS gave.  He was ALWAYS selfless. My angel on earth was now my angel in heaven.  I can't even begin to describe the pain that has followed his loss.  It is a pain that is unimaginable.

Our super hero traded in his cape for wings.  And he did this with such grace.  All the days leading up to May 19th, were chilly, cloudy and gloomy.  But the day that Carter left us, it was sunny and beautiful.  His way of telling us that he is okay.  When I walked outside after he passed away, I sat down on a swing and stared at the memorial bricks on the ground...my mind blank.  And I heard him.  I heard Carter pleading with me and saying "mommy I'm okay, I'm okay" clear as day.  That might sound crazy, but I heard him.  I know that the sun on my skin was him touching me.  The breeze in my hair was his fingers.  The bird that almost flew in to me as soon as I stepped out of the hospice home, was him showing me that he is flying now.  On the drive home, Josh and I seen the most amazing thing in the sky.  The clouds were undoubtedly our sweet boy showing us that he's an angel in the sky.

My heart will forever hurt so bad.  I miss him so much, it's hard to breath.  Life will never be the same.  I will never be the same.  But I know Carter is healed, he is free.  I know he is always with me.

What beautifully broken means to me...

I began my adult life as I knew it 8 years ago.  I met my husband, got married and had three beautiful children..  My life was beyond what I ever imagined for myself and I couldn't be happier.  Life was falling into place and life was good.  By no means was my marriage perfect and the medical struggles with my son, heart wrenching.  But over-all, it was everything I wanted.  The foundation of my life was solid or...so I thought.  I could take on the world at any given moment without skipping a beat.  I was organized, focused and determined each and every day.  It was just when I thought I had it all figured out, that life came to a shattering halt.  My very foundation crumbled below my feet.  Addiction wasn't just something I read online or watched on tv.  It wasn't someone elses horror story nor was it something "that would never happen to me".  The reality of my life only arms length away.  Lies, heartbreak and deceit.  The person I loved with all my heart and chose to build a life with, had let me down beyond comprehension.  I broke.  For months, I lost the person I was.  Some days were nothing but a blur and I struggled to maintain relationships and keep up with normal daily functions.  I found myself worrying more about my husband and what he was doing than I did the things that really mattered.  I begged and pleaded for recovery and health.  As I begged with all I had for something to give, I also knew that there were things that could NOT happen.  My children could not be effected or put at risk because of his choices.  No matter how hard it would be to walk away or put up the big fight, I knew the day would come if my children were ever in harm.  In my heart, I knew something was coming...I slowly and involuntarily built strength within myself that even I was doubtful of.  When something happens that involves your children and their well being, it's amazing how fast and furious your strength can tear through you like a wild fire.  The right words, the right wrongs, the right anger.  I made the calls that would forever change my life...for my babies.  I never turned back.  I packed the neccessities, buckled in my babies and drove away.  Not one glance in the rearview mirror.  The happy times behind us...the memories safely tucked away for another tiime.  There would be no more waiting, no more hoping for change and no more wasted time.  Enough is enough.  Sometimes waiting is worth it, but there are times when waiting could mean losing it all.  I was at the crossroads in my life when I had to make a choice...to take the road that was uncertain and full of risk or the road that guaranteed a light at the end of the tunnel.  Through the toughest months when I could barely sleep or eat, my happy place was a place of my own that was full of certainty and peace.  No more wondering and worrying.  No more lies.  No more blame.  No more tears.  At this point, having life flipped upside down was anything but bad in my situation.  In fact, it was so much more.  I didn't give up on my marriage or turn my back on my husband.  I instead, wrapped my children in protection and chose to give THEM a fair chance.  The funny thing with addiction is, there is no right choice.  Where is the line drawn between enabling and disabling?!  A question I asked myself daily.  It's a question that even professionals are unsure how to answer.  But the answer was easy for me; my kids deserve nothing more than a safe life where they are put first, even if that means leaving their dad behind.  My husband made his choices which didn't mean we had to live with it.  I refuse to live with it.  In the last 3 months, I have filed for divorce, gotten my own place, worked as many hours as I can to make the bills, obtained sole custody, gotten my own van and found the most important thing of all...PEACE.  Life is far from figured out, but that's okay.  The light at the end of the tunnel isn't just an idea anymore. It's not some bright star in the sky...I can touch it, smell it and taste it.  It's my now.  In this unfair world, I have become beautifully broken.  My heart still hurts, but in a different way than before.  I have days when all I want to do is cry and feel sorry for myself, but I also have days when I look at my accomplishments and feel proud and strong.  My focus now is to provide a stable life for my babies.  I never imagined I would be rebuilding my life as a single mom, it was never in my plans.  I remember my step-dad always telling us kids growing up that "life isn't fair".  It sure isn't.  I've been dealt my fair share of low blows, but life is short...I know that all too well.  2015 was by far the hardest year of my life...not only did my marriage fall apart, but my 6 year old son's disease has went from stable to progressive.  So many people have said they don't know how I do it...I only smile and chuckle at that.  I myself, wonder the same thing.  I have no idea how I do it, except just doing it.  I have no choice.  I just choose to embrace the day.  My 3 children are happy and well.  We have each other.  That's all that matters.