New Normal

Sad News. This is Bernie's dad writing. Our beautiful little boy lost his battle with HLHS on April 18 at approximately 9:00PM. We thank God for the gift of Luke and for the 5 weeks we had with him. We have loved him so much. Now he is at peace with the Lord in heaven. We would like to thank each of you for your prayers during Luke's battle. He was doing so well. We had him to the cardiology clinic earlier in the day and everything looked great. At around 8:00PM he became distressed and was taken by ambulance to St. Luke's hospital in The Woodlands where he passed away. Please now offer prayers for Bernie and Tommy. It will be a very difficult time for them.

These were the words that my father wrote on Luke's CaringBridge site the day after we lost him.  

This is when we had to start living our new normal:  life without our son.

On Luke's 12th birthday last month, I wrote about fear.  Unfortunately, fear has gripped our country and our world more than I ever could have imagined.  The day of his 12th birthday, the world as we knew it completely fell apart.

Now, we continue to hear two words:  new normal.  

New normal.  I truly can't think of any term that tears into my heart more than this phrase.  These words are like nails on a chalkboard.  Because it's not really a "new normal".  It's a new life.  It is a life that you never could have imagined.  It's a life that you probably never asked for and one that you definitely never wanted.

The new normal after Luke died was almost impossible.  It was painful, emotionally and physically.  Yes, physically...my body had grown a baby for nine months and suddenly I had no baby to nurse or to be my calm while I healed.  My body went into shock.  And the crying.  The crying wasn't your ordinary ugly cry after you watch a Nicholas Sparks movie or see that sad Hallmark commercial.  This cry was guttural.  It was loud.  It was deep.  It was angry.  It was painful.  The new normal after Luke died brought even more grief:  the loss of relationships that I believed to be real and meaningful, the disappointment in people who weren't present when we needed them the most, leaving our old normal (boring, but beautiful) life.

As for what we are all facing at this moment, I feel like after we settle into our new normal, things won't always be easy. At first, it will feel impossible, emotionally and physically.  What we are dealing with right now is emotional trauma.  We are scared, forced to feel fear each time we see another stat or read another article.  We are stressed, wondering when the paychecks will stop or whether we will have a job after all of this.  We are physically (and many times, emotionally) distant from loved ones and friends.  When we come back together (and I have to believe that we will come back together), how will this trauma affect our ability to "just be"?  Because right now, we are all just trying to survive.

But you know what?  The new normal doesn't have to be awful all the time.  It won't be perfect.  It won't be like it was before.  But our new normal can be OK.  It can bring good.  

As I said, our new normal after losing Luke was tough at times.  But it wasn't all bad.  No, this new normal helped us realize how precious life truly is.  We were blessed with James and he, along with Emily and Matthew, helped us live through our grief.  Their lives, and the hope that comes with watching them grow, takes away much of the sting of grief.   This new normal also brought us the gift of empathy.  It is true that, until you face something similar, it is virtually impossible to be empathetic.  You may be sympathetic, but empathy is a bit more difficult to grasp.  Emily and Matthew, living through the pregnancy, life, and loss of Luke, learned that kindness is always the way to go.  Be kind to everyone you encounter, because you never know what storm they may be facing.

I think that the same can be said for what we are facing right now.  The new normal won't be perfect.  It won't be rainbows and sunshine.  But as I said, it can bring good.  I am hopeful that the end of this pandemic will bring more compassion for others and what they are facing.  For the first time in our lives, the entire world is in this together.  We are all facing this virus--no one person is alone.  It doesn't matter if you are from the United States or Australia, Italy or Singapore.  It doesn't matter if you are a conservative or a liberal.  And it doesn't matter if you liked "Tiger King" or hated it.  Everyone has been affected by this novel virus.  We are all in this together.  As such, when we come out of quarantine, I hope that our new normal includes more patience, more thoughtfulness, more humanity...and less hatred, malice, and contempt for those who act or think differently.   

Yes, the term new normal will always give me pain, but I need to remember the good that has happened as well.  And just as our new normal after Luke caused pain as well as joy, I have faith that our new normal post-COVID19 will also bring the joy with the pain.

I want to leave you with a picture of our perfect baby boy...one that my sister took post-op, with his little hands, clenched in fists, showing the world his strength.  I pray that this precious face of perfection gives you hope.  Hope that kindness and love will return to our world when we face our new normal.  Because if we can't be good to others, then we are allowing the virus to win.

  

Fear

Fear.  It is real.  And right now in our world, it seems as though fear is taking a hold of everyone and everything.  I was feeling ok about the COVID19 pandemic, but those "ok feelings" are starting to wane and I feel the fear creeping in.

If I am going to be honest (and I really try to be transparent on this blog), I have always had fear.  My sister Katie believes that my fear stems from a procedure that I had done when I was little.  Her story (which may or may not be accurate 😉) goes as follows:  they were wheeling me in for whatever procedure (I had quite a few in my early years) and I screamed, reaching for my father.  My last memory before the procedure would have been of me screaming for my dad while they took me away.  Katie thinks that this event had a lasting effect on me.

Although I can't personally recall this incident (perhaps I have blocked it out for psychological reasons), I cannot remember a time in my life when I haven't felt fear.

Fear of the unknown.  Fear of the known.  Fear of everything that may happen or everything that may not happen.

Before Luke was born, my fear was present, but it wasn't acute.  I had normal fears:  bad grades, Tommy's travel, the pregnancies and births of my babies, the dark, and the elusive white van with no windows.

The moment Luke was born and we received his diagnosis, that fear became acute.  It was omnipresent and enveloping.  It was paralyzing.

Yes, that fear struck me to my very core:  our baby had no chance to survive without intervention.  And even with intervention, his chance at living a long life was practically zero. 

But through that fear, my faith became stronger.  It became more real as I had to face the beliefs that I had all my life.  My life had been pretty easy until then.  Sure, I had a few things that threw me for a loop every now and then.  But nothing could have prepared me for the birth of a critically ill child.  I had to rely on God as I have never relied on him before.  

And through my fear, my relationships became stronger.  My husband was (and still is) a constant source of support, prayer, and love.  My children reminded me that I was stronger than I believed and that their unconditional love was what I needed to get through the most difficult days.  My family and friends showed me what happens when people step in during the hard times.  When people don't run when the going gets rough.  When people walk through the fire with you.

But the fear is still there.  Always lingering.  Some days it is distant and some days it is right in front of me.  It is a constant battle, but I am trying.  And honestly, that is the best I can do. 

This year, as we celebrate our Luke's 12th birthday, I pray that we can all find the strength to face our fears.  That we can strengthen our faith, our relationships, our belief in ourselves. 

That we can be like that little boy with the broken heart:  who faced each day with a warrior's heart and who taught me that a tiny baby can be stronger than most adults.  Who, even though he was born fighting a battle, never gave into the fear, and taught us all how to love harder and pray more deeply.

Be like Luke.  Don't give into fear.  Be brave.

Happy birthday, Wittle Bubba.