"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.