Control {or lack thereof}

You know when you are in an interview and the interviewer asks you to name your biggest flaw?  My answer has always been my control issues.  

Ask my co-workers and they will say that I have control issues.  Ask my parents and they will say that I have control issues.  Ask my siblings and they will say that I have control issues.  Ask my children and they will say that I have control issues.  Ask my husband and he will say that I have control issues.  

Lack of control is my kryptonite.

So when I feel like I don't have control of a situation, I naturally become uneasy, anxious, and {sometimes 😉} difficult.  I overthink, overanalyze, and overreact to situations which are beyond my control.  

Imagine the lack of control I felt the night that we lost Luke.

What happened that night is very personal to me and Tommy.  When talking to friends over the years, I have been able to recall the story without too many tears.  But it is not a story that I feel comfortable sharing on a forum like this (possibly because I would be unable to control how the story may be distributed}.  But I can tell you how I felt.  How the loss of control made me rely on my faith, my husband, and my family.  How I found refuge in God and Tommy.  And in my parents, Nana, and my siblings.  

How I realized that there was nothing {nothing} that could change God's will for Luke and his life.

It was a pretty surreal thing to stand outside of that ER that Friday evening, praying with my husband.  Telling God that we would "be ok" if He took Luke.  Did He really need our permission to welcome Luke to paradise?  Of course not.  But as I stood there with my best friend and prayed, a huge weight was lifted from my shoulders.  And that control that I had been holding onto so strongly had simply disappeared.  It was shortly after we stood weeping and praying outside of that ER entrance, when a member of the hospital staff came to bring us inside.  And it was then that we knew that Luke wouldn't make it.  It was as if God was waiting for us to release the control.  To know that we would be alright. 

And we are.  We are ok.  We aren't perfect and things haven't always been easy.  But we have our love, our friendship, our faith.  And with these things, we can get through anything.  And after losing Luke and all the things we saw and experienced that night, I'd like to say that I am pretty proud of me and Tommy.  We made it through every parents' nightmare.  And we came back stronger.

Emily is headed to college next year and the thought of her being on her own, a few hours away, is downright frightening.  But with Tommy's help, I am hoping to let go of that control and to trust in the path that she will take in life.  To remember that she is an intelligent young woman who is strong and faithful.  I can't wait to see how she soars!

I know that I will always struggle with control issues, but my hope is that I will be able to deal with them a bit better as time goes on.  And even though there are many things that I cannot control, I can control some things:  how I treat others, how I can help others, and how I can react when faced with adversity.  

On this day of our Luke's passing, please try to show love and kindness, offer help when needed, and don't give up when things get tough.  Take control of what you can, and release the things in which you have no control.

Here is one way in which I can spread love and joy, sharing a picture of an angel on earth:

And a picture of our Emily, because she has worked hard throughout school and deserves the recognition:    

We've Got a Teenager!

Fear.  It’s what I wrote about this time last year.  And I think it is safe to assume that it is something that each one of us has felt over the past year.  It hasn’t been an easy year for any of us.  It has been difficult for everyone.

I will never forget March 12^th, 2020.  It was the day that our world shut down.  It was the day we got the call that schools would be closed for a few days.  It was the day we first heard the term “14 days to slow the spread”.  And it was the day that we knew our world would be changed forever.

But it was also Luke’s 12^th birthday.  March 12^th is always a sacred day to our family.  And last year, it was marred by this deadly virus.  A virus that has taken so many lives. Our yearly tradition of Dave and Buster’s and Chuy’s was nixed due to covid fears.  We created new memories…enjoyed pizza at a local restaurant and watched a movie together at home.  But it wasn’t the same.  And it will never be the same.

Yes, the world changed for all of us last year.  But on March 12^th, 2008, the world changed for our family.  That day, our precious Luke Thomas was born.

Thirteen years old. It’s yet another milestone that we won’t get to observe with Luke.  Another “big” birthday without our son.  We never had a birthday party for Luke.  We never watched as he devoured a smash cake.  We never had the chance to sing “Happy Birthday”.  We never got to see him open presents.

There are so many things we have missed over the past 13 years.  We’ve missed baby belly laughs and toddler tantrums.  We’ve missed first days of school and countless bedtime stories.  We’ve missed childhood fears as well as childhood triumphs. 

Much like this past year was stolen from all of us, memories with our son were stolen from us. 

Memories that we were never given the opportunity to create.  Memories that were gone the night we lost him.  I weep for these missing memories.  And simultaneously, I am so thankful for the chance to make memories in his honor with his sister and brothers.

Yes, this year has been hard.   We lost Tommy’s mother in late January.  She was a strong Italian woman.  Small in stature, but huge in spirit.  She raised four boys and was a devoted wife, mother, Nana, and Great Nana.  She was a talented cook and enjoyed entertaining her friends and family.  The loss of Nana is a difficult pill to swallow, but knowing that she was welcomed to paradise by her husband, son Bob, and Luke makes my heart happy.  Before she passed, she and Tommy had a conversation.  During the conversation, they recalled the many joyful things in their lives.  They recalled the memories they had created as a family.  Those memories are priceless for Tommy and I am eternally grateful that he was able to thank his mother for providing them. 

My hope is that we use this year to create memories with your family.  Make the memories that we were unable to create with Luke.  Memories that will make you smile, laugh, or even cry.  Just make the memories. 

Because after this past year, we all deserve to make some amazing memories. 

And as a bonus, here is one of the few memories Tommy and I made with Luke (post-op).  Oh that sweet cry.  It was perfection.  {and please ignore the woman’s voice in the background-- 😉}

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.

The Soul Remains

If you have read the blog for a bit of time, there are a few things that you may have noticed:

*  I love my family fiercely.
*  My faith is very important to me.
*  I am {just a tad} emotional.
*  I use a lot of repetition in my posts.
*  I enjoy using metaphors {you can read one here or here}.

So, as we remember Luke Thomas on his 11th Angel Day, I have another metaphor I would like to share...

You don't need to be a Catholic, nor even faithful, to feel the heartache caused by the  devastating fire at Notre Dame.  

These images are so powerful:

                                                                   Source:  abcnews.com

There you see it:  the images of a church that was devastated.  A place where the roof caved in and walls fell down.  Where flames threatened to destroy the entire building.  

But amidst all of the burned wood and melted scaffolding, there is hope.  There is hope because the soul of the church is still standing.  It has survived.  Through the destruction and wreckage.  

The very soul of the church remains:  the cross and the altar are still intact.  

I feel like the loss of Luke is a lot like the fire in Notre Dame:  the church is still here and I am still here.  But Notre Dame is not the same as it was before the fire.  And I am not the same as I was before we lost Luke.  

But even though we are different now, we are still the same.  

Our souls remain.  

This was me before the devastation, five months pregnant with Luke:

I was oblivious to the destruction that would come to our family four months later.  I was blissfully unaware of the fact that the world as we knew it would come tumbling down in the very worst way.  I was excited, fresh, and full of life (literally and figuratively).

This is me now (with Tommy), a little over 11 years after the previous picture was taken:

I look older.  More tired.  There are more wrinkles and dark circles under my eyes.  There are gray hairs under the brown and I have {a few more} pounds than I did back then.  

Yes, my body is different.  It has changed drastically since we lost Luke.  In so many ways.

But my soul remains the same.

When you lose a loved one, the grief takes its toll.  Emotionally and physically.  You are fundamentally changed.

But your soul remains.

When we lost Luke, the grief was overwhelming.  It was physical:  my body was still recovering from pregnancy and birth.  I was released from the hospital within about 8 hours from having Luke.  My body never had a chance to fully rest.  I was still producing milk, with no baby to feed.  It was emotional:  I still had to be a mother to two little ones, but I was so devastated that it was almost impossible to be there for them.  I had a husband who was also grieving, but I was unable to be the wife he needed.  I couldn't understand why there were people who ignored his life and his death, people who should have been there, but who were absent.  The physical and emotional pain were unbearable at times.

But my soul remains.

I am still the woman who was created by God.  I am still Bob and Bernadette's daughter.  I am still Tommy's wife.  I am still Mom to Emily, Matthew, Luke, and James.  

My soul has a purpose, and that purpose has never changed.  Notre Dame has had a purpose for over 850 years.  And that purpose will never change.  

Even though we are broken.  Even though we have scars.  Even though people once believed that there was no way for us to survive...

We survived.  Our souls survived.

And, although we will always be different than we used to be, we are still the same.

********************************************************************************************************

Thank you for traveling this journey with our family.  We are continually amazed by the people who still talk about Luke, who ask about him, and who visit his site when we are unable to be there physically.  It means more to us than you could ever know.  

Thank you to Nana for visiting our boy and for bringing him a new wreath for Easter: 

Please remember our family tomorrow as we relive the final day spent with Luke.  He was the most beautiful, sweetest, and strongest person I have ever known.  And I am so thankful for the promise that we will see him again one day.  

Luke Thomas Haberman, 3/12/08-4/18/08.  This picture was taken the night before we lost him:

God bless you all and thank you for continuing to read my musings.  If you'd like to see what we do in Luke's name, please visit Luke's Legacy Boxes on Facebook.   

Protection

My parents are doing a major clean-out of their house, so I was over there the other day, grabbing some things that we have stored there.  One of those things was this box:

This is one of Luke's boxes.  One of the few boxes that hold everything pertaining to our boy's life.  A few boxes.  That is so very tragic.

Upon opening the box, the memories came flooding back:  the cards, the Ronald McDonald House donations, the stuffed animals:

But this...this was what stood out to me:

This.  A precious swaddler that surrounded our boy in his most vulnerable days.  A simple piece of cloth that protected our boy while he lived.  It hugged him to make him feel safe.  It kept him warm and snuggly when we couldn't hold him.  

It protected Luke.

The first thing I did was smell the swaddler.  I wanted so desperately to smell him.  To be able to remember what he smelled like.  Because I can't remember.  And it kills me. 

But there wasn't a "Luke" smell.  There was a smell, but not a sweet new baby smell.  Not a soft, freshly washed baby hair smell.  Not a "can't get enough of him" smell.  It was a "I am a piece of cloth and have been sitting in a box for almost 11 years" smell.  And that's not a very good smell. 

But the fact that I couldn't smell our baby boy didn't bother me as much as the fact that this little swaddler was empty.  It was put away after it's job was done.  Because there was no longer a baby for it to protect.

And that's kind of the way I sometimes feel:  now that he's no longer with us, I can no longer protect him.  But unlike the swaddler, my job is not done.  I am still his mother.  Tommy is still his father.  Yet there is no child here for us to protect.  Luke's job here is done.  It was completed almost 11 years ago.  But ours?  Our job will perpetually be unfinished.  Incomplete.  

Do you know the feeling when you have left a job undone?  All of the hopes, dreams, and expectations for that job...left undone?  It's frustrating.  It's stressful.  And in our case, it's heartbreaking.  

Our hopes, dreams, and expectations for Luke and his life were dashed.  Raising him was left undone.  

I'm still not sure how to handle that.  I constantly find myself thinking about who he would be...would he be reserved and observant like his father?  Would he be able to talk to a wall like his mother?  Would he be driven like his sister or a goofball like his big brother?  Would he and his little brother be best friends?  He would be in fifth grade now, preparing to leave elementary school for a new journey in middle school.  Would he be excited or nervous?  Would he need a new heart or would he have been living with a new one for years? 

The ugly truth is that we will never know the answer to any of these questions.  We will never get to see our baby boy grow.  Our job as his parents was cut short.  And we no longer had his precious life to protect.  

But that's ok.  Even through all of the heartbreak, and the grief, and the sadness.  Even though our arms have been empty for almost 11 years.  Even though the pain can be both emotional and physical at times.  Even through all of this, we are stronger and better because of this boy.  We have held more tightly to our faith and we have held more tightly to each other.  

Because of this tiny baby with a very broken heart, we have learned how important it is to protect each of our children and ourselves.  We are a lot like that little swaddler from the NICU:  we are doing our best to protect our little family.  To teach them to love others and to be kind.  That it's ok to walk away if it hurts too much to be present.  That not everything in life will be easy, but you must keep going and keep smiling.  That no matter what, God will be with you...even when you think He is not.  And that whenever you need Him, all you have to do is pray.

As our angel turns 11 years old, I ask that you do a little something to celebrate life.  To celebrate those living and also those who have left us.  Be like the NICU swaddler...protect others through kindness and love.  

And make sure that, if possible, you finish the job.

Here are some pictures that make my heart happy.  Luke in his swaddler, protecting him, doing the job it was designed to do:

Happy 11th Birthday, Luke Thomas!

This is hard...

This is so hard.  Hard in so many ways.  It's hard enough missing him each and every day.  It's hard waking up each morning, and having the stinging reminder that he is gone.  But do you know what else has become surprisingly difficult?  As time goes on, it is getting even more challenging to write on this blog.

And that absolutely breaks my heart.

I feel defeated. 

I have always said that it is our job to make sure that Luke's legacy lives on because he is not here to make one of his own.  But my heart is broken because I simply can't write any more than I have already written over the past ten years.

I have written about his birth, his diagnosis, his surgery.  I have written about his daddy, his siblings, his grandparents, his aunts and uncles.  I have written about my faith, my fears, my joy, and my anger.  I have written about my struggles, my victories, my hopes, and my dreams.  And I have written about his death.

Truly, there isn't much left to write about.  I'm kind of lost.  This tenth anniversary has been one of the hardest, probably because double digits is a big deal in a child's life.  But also because a decade has passed since we last saw those beautiful eyes.  An entire decade without our "bringer of light".

I wish that there was something that I could say that hasn't already been said.  Something deep.  Something profound.  But all I can say is that I am sad.  I'm sad that our baby was born with a broken heart.  I'm sad that he had to go through open heart surgery at one week old.  I'm sad that no one listened when we told them that he wasn't well.  I'm sad that we never got to hear him laugh.  I'm sad that he never got the chance to crawl, or walk, or say "daddy" or "mommy".  I'm sad that he never got to meet his legacy, his baby brother.  I'm sad that he was never able to attend school or play a sport or an instrument.  I'm sad that he will never get to drive a car or go on a date or have a job.  I'm sad that he will never get married or be a father.  I'm sad that he was not given the chance to outlive his parents, his grandparents, or even a few of his great-grandparents. 

I'm sad that he's gone.

And I'm sad that, even ten years later, there are still people who can't acknowledge the loss.  People who have yet to mention his name.  People who ignore the fact that he lived.  People who cannot pick up a phone or send a text to offer a word of encouragement or love.

I'm sad that people are cheating themselves by not knowing Luke.  

As much as I wish that this would be an uplifting post, I am sorry that it didn't turn out that way.  The truth is that Luke's actual day of birth was one the the most difficult days of my life and the actual day of his death was actually a lot easier because I immediately felt God's mercy bestowed upon our entire family, but especially upon Luke.  He wouldn't have to live a life full of physical suffering.  And we wouldn't have to watch him live that life.  No, he was whole.

But ever since that day?  His birthday has been so very joyful.  And this day?  This day has been so very sorrowful.  There is just no joy in remembering the day you watched helplessly as your baby boy died.

So once again, I am sorry that this post is not what you may have expected or what I may have hoped for, but please extend grace.  Because honestly, after ten years of posting, I am scared that I am losing so much of what I have to say about our precious Luke.

And it breaks my heart.