Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Monday, May 26, 2014

I mourn....

Three years later and I find that I am still in mourning...

 In labor with Xavier!

 I mourn the loss of stillness in my life.  From the moment that we received Xavier's diagnosis I lost all stillness.  I remember sitting on my fathers lap, sobbing because I knew that I would never have a moment of stillness again.  I would always from that point on have some form of worry in my mind for this child.  I knew that I would never again soak in the tub and have peace.  I would never be able to lose myself in a book, completely relax in the sun...there will always, for the rest of my time on earth be worry in my mind.  I have accepted that, I have learned to live with it and fight against it....but I miss being carefree, worry free...if only for a moment of stillness.

He is finally here!

I mourn the loss of other children walking the journey with us.  Some I have known, held, hugged, laughed with.  Others I only know by a picture but it does not make the loss any less painful, any less real.  To see my friends mourn the loss of their leaves a scar on my soul.  And it reminds my heart of how fragile our "healthy looking" kids really are.

Recovering from his Norwood

I mourn the loss of ignorance.  I long for the days when HLHS, PLE, ECMO meant nothing to me.  I wish I had no clue what plastic bronchitis was.  I wish I didn't have to research the fontan, liver biopsies, tricuspid valve replacements....I wish I didn't know what it feels like to sign a consent where the number one risk is death.  I wish I wasn't a pro at giving my three year old a shot or testing his pacemaker.  I wish Xavier wasn't a pro at laying still for an ECHO or facing the dreaded blood draw.  I could go the rest of my life not worrying about heart failure, exposure to toxic medications that are keeping him alive.  I wish I didn't have to wonder what prolonged lovenox injections are doing to his bones, prolong lasix is doing to his kidneys and for the love of God, do not google the side effects of amiodarone...the drug that helped him recover from his last surgery.  There was a time I had no clue what oxygen saturations were, what the normal heart rate was for a two year old or what sensory processing disorder was.  I know and have seen too much for my own good.

Recovering from his Glen

I mourn for my parents, my in laws, my husband, my brother and sister in law and for my daughter.  All of those people who are affected by this awful disease.  They were thrown into this journey just as we were.  They worry about not only Xavier but us as well.  I can't image how my mother must feel seeing her daughter stress and worry so much about her child.  She not only worries for Xavier but for me as well.  Our family "holds down the fort" while we are gone for weeks at a time.  Keep things in working order.  They analyze every sneeze and cough...wondering if they should come visit...they wash their hands raw worrying about getting him sick...they watch their sweet grandson struggle with development and watch us work so hard to help him catch up.  They celebrate wholeheartedly as he reaches little milestones a year later than his peers..reminding us that he will do things in his own time.  I mourn for my sweet baby Elliott who has no idea that her beloved big brother is sick.  At 5 months old she simply adores him and loves to watch him walk around and play.  The way they look at each other is priceless.  She will one day come to learn that he has a sick heart.  She will visit him in the hospital and will carry her own burden that goes along with being a heart sibling.  She will make trips to the hospital to cheer him up and have so many questions that I hope to be equipped to answer.

Recovering from his valve repair/pacemaker

I mourn.....

daily, hourly but I also celebrate and all I have to do is to look at him and I smile....I thank God that he is here with me TODAY.  I take a deep breath and remind myself that tomorrow is not promised and that I need to live in the moment.  I treasure every hug, smile, laugh, and temper tantrum.  We celebrate three years with our miracle on the 28th...the baby that we could only hope to have three minutes with....WHAT A BLESSING.


Xavier goes in for a heart cath next Monday, June 2nd.  This is the first step toward finishing his repair.  Your well wishes, prayers, and positive thoughts are appreciated today and always.  Thank you all for taking this journey with us.  May God bless you today and all the days of your life!