Our baby boy is 15!

At sunset the little soul that had come with the dawning went away, leaving heartbreak behind it.” –  L.M. Montgomery

I read this quote today, and it really struck me. It also made me think more about the brief time that Luke spent here on earth. And the grief that followed.

Fifteen years seems like a long time, but it truly feels like yesterday. I remember seeing Luke for the first time. I remember looking at his little hands as he nursed right after birth. I remember noticing that they were still blue. When I asked the nurse about his hands, she reassured me that it takes a while for blood to circulate through a newborn's body. She heard a murmur a few moments later...

I would by lying if I said that I have never asked God "why Luke"? Why did our baby have to die? Why wasn't our baby one of the ones who made it? Why did we have to bury him? This boy was so wanted, he was so loved. 

One day, I will know the answer to these questions, but not until I enter eternity with Luke.

I'm not going to lie. This post has been weighing heavily on my heart over the past few weeks. I have been writing on this blog for almost fifteen years. At the beginning, I wrote one or two times a week, just to share our triumphs and our setbacks. To share the happy and the sad. 

It's not an exaggeration to say that this blog is one of the things that has helped me in my grief journey. Openly sharing my feelings has been a way for me to deal with my own grief, while hopefully showing others that it is ok to be sad, to encourage, to remember.

But this year, it has been really difficult to post. 

I just can't think of anything that will be encouraging or uplifting. 

Fifteen years of writing in the blog, and I'm lost.

I just don't know what to write, but I feel an obligation to write.

Because, in my mind, if I don't write then I fear that people will forget about him. And I have always said that Luke can't make his legacy, so it is our responsibility to make one for him.

I am well aware that {some} people have grown tired of me talking about Luke. I'm not blind to the fact that some of our closest friends have stopped reaching out. And that is heartbreaking.

But we will not ever stop talking about Luke. Because that is our responsibility as his parents. So I really want to apologize to those who I make uncomfortable. It is not my intention to upset others, it is just my intention to allow people know Luke. I look at it as a privilege to know and love our precious son.

When I say that this post is probably the most difficult one I have written, it is probably because I have been writing on it for such a long time. Fifteen years. 

It's a difficult concept to think of all that he has missed: high school, driving permit, dating...but then I realize that those things don't matter to him, because Luke is in heaven. He finished the good race, just a little earlier than most. 

I read a comment on social media the other day, it was on a video that a mother posted about the loss of her child. The poster said that to us, we grieve the life that the child didn't have. But to the child, he knew love his entire life, so he lived a full life {I summarized}. 

I pray that Luke felt how much he was loved. I pray that although his life was short in our eyes, in his eyes his life was full.

I feel the need to apologize for this post. It isn't the kind of post I am used to writing. But it is my heart and it is truth. Fifteen years is a long time to write about your child's death.

But if it helps one person know and remember our Luke, then I have done my job as his mother.

God bless our little Saint Luke, and may he intercede in all of our prayers.

 

Goodbyes

Today is the day that I dread each year:  the day we lost our little Luke.  The day we said goodbye. 

But we didn't really get to say goodbye to Luke, not in the literal sense.  

I will always believe that Luke fought to stay alive that last week because Tommy was out of town for work.  Luke had been "off" the entire week.  He was vomiting during most of his feedings and his weight was fluctuating to the point that it made my mama heart worry.  But he fought through the week, making sure that Tommy could see him one more time.  I think that he knew his time with us was waning, and that Tommy would need to see him one more time.  He went into distress within hours of Tommy returning home.

On the night we lost Luke, there was so much chaos.  The call to 9-1-1, the firefighters arriving first, Matthew waking up and rushing him back to his bed, the EMT/paramedics arriving.  The ambulance ride and being told that "babies do this all the time"{ummmm, how many babies who have half of a heart do this "all the time"?} and telling our baby boy that he would be ok and that we were going to get him to the hospital.  And then those dreaded words "pulse is dropping", and consequently being rerouted to a closer hospital.  They took him away and we were never able to give him a proper goodbye.  By the time we saw him again, he was gone.

Lately, I have been thinking of saying goodbye to writing on this blog.  Over the past 14+ years, writing has been cathartic for me.  Posting my fears, my triumphs, and my hopes has helped me through my grief journey.  It helped give me strength when I was pregnant with James.  But it's just not the same...I feel like it may be time to say goodbye to this page.  The jury is still out on that one...

But there is something that I want to share as I close out this post: a little hello.  If you have been reading the blog for a while, you know that one of my biggest fears is that Luke will be forgotten.  That people will not know his legacy.  We have a finite number of pictures, and even fewer videos.  But, after a lot of years of trying to figure it out on our own, my sister Katie was able to convert a couple of our videos so that I can post them on the blog.  The first video is a little longer and it was filmed on Easter Sunday 2008.  Luke was a few days out of his Norwood (open heart) surgery and he was still in the CVICU.  It was tough being in that room, and when I listen to the questions I asked, it is so apparent that I was overwhelmed and had no idea what was going on with Luke and his recovery.  The second video is quite a bit shorter, but so precious because you are able to see the beauty that was Luke's face.  He was the most beautiful baby I have ever seen.  This video was taken at home, after his bath, about a week before we lost him.  I look at this video and can see how scared I was, even to hold him.  But the way he looked at me while I held him?  That is something that I needed to see tonight.  It is something that I needed to feel.  Because if we cannot have Luke here with us, at least we can have the memories.

So without further ado, I would like you to say hello to Luke Thomas:

He was real.

It has been 14 years since Luke was born.  And in about five weeks, it will be 14 years since we lost him.  A beautiful life lived in just over five weeks.  

But most days, none of this seems real.  It's like a dream.

Speaking of dreams, I had a vivid one last night.  It was one of those dreams where I was back in college {we all have those kind of dreams, right?}.  I was selected to be a Fish Camp Co-Chair {my Texas Aggies know}.  But I was no longer in college.  I was in my mid-forties and I had a family.  I remember thinking while I dreamt: "why would they choose me to be a Co-Chair again?  I am married, a mom, I have a job, and I am old!"  I knew while dreaming that none of it made sense.  And when I woke up, I was relieved that it was only a dream.

But this dream.  This one is real.  This is a nightmare.

Each morning when I wake up, it only takes a few moments for me to realize that he is really gone.  That this is real life.  That this is a nightmare from which we will never wake up.  

As much as this nightmare hurts, our world is better because he lived.

He was real.

He was the best parts of me and Tommy.  He had his Grampa's ears and his father's nose.  He had my grandmother's mouth and his brother's curly hair.  

He was real.

He was such a good baby.  He rarely cried.  He watched us.  His eyes were so wise.

He was real.

His legacy lives on in me and Tommy.  In his siblings.  In his grandparents, aunts, uncles, and cousins.  His legacy lives on in Luke's Legacy Boxes and in the countless families who have been helped through the generosity of our family and friends.  

Because he was real.

And I am so thankful for this real baby boy, despite the endless nightmare of being an angel mom.  I count myself blessed that Luke was mine and that we were able to share nine months, just me and him.  How lucky am I that I carried a saint for nine months and that I was able to meet him face-to-face?  As much as I wish I could wake up from this dream, I am able to recognize the important part that he played in my life:  that every life is worth being lived.

He was real.

Happy 14th birthday, beautiful boy.  I so wish I could wake up from this dream and you would be here with us.

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.