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.

{Amazing} Grace

...how sweet the sound, that saved a wretch like me.

How can ten years pass so quickly, yet seem to have gone by so slowly?  How can it seem like we held him for the first time just yesterday, yet we said "goodbye" forever ago?  How has our family survived without our son, our brother, our grandson, our nephew?  

You know, this year has been hard.  Like really, really hard.  I'm sure I have said that before, but this year is different.  This year, the milestone is different.  Double digits.  Luke would be ten years old.  Double digits.  That's huge!  

And yet, as these ten years have both flown by and dragged on, I feel him less and less.  Can you imagine how heart-wrenching that is?  To have that void?  To not be able to feel one of your children?  To beg God to allow him visit you in your dreams, to send you a sign, to be near you so that you can feel his presence?

But...

Sometimes those signs are so subtle that I almost miss them.  Like this morning during mass.  As we sat down, I found myself {once again} begging God to allow Luke to send a sign that he was with us.  As the choral member opened the list of song numbers, I opened the hymnal to the last song listed and it was one of the songs that was sung at Luke's funeral:  "Amazing Grace".  

I immediately showed Tommy and he nodded, knowing that tears would come {honestly, he was probably fearful of how many tears would come}.  But it wasn't so much the song as a whole and the fact that it was sung at Luke's funeral that made me weep like a baby.  Since Luke's death, "Amazing Grace" means so much more to me.  The meaning of the words are so much more profound to me than the beauty of the music.

Now I don't promise to be a religious scholar, nor do I promise that my interpretation of this song is correct in any way, shape, or form.  But I do love that boy with all of my heart and I always do my best to honor him and his life.  This is what the song means to me in my life now, because of Luke.

So here it goes...   

Amazing grace! How sweet the sound,
  That saved a wretch like me!
I once was lost, but now am found,
  Was blind, but now I see.

When we first lost Luke, I was angry with God.  I yelled at Him.  I told Him that Luke was our baby and that He couldn't have him.  That I wanted him back.  How dare He take our baby.  He was so loved and so wanted.  Why did He have to take our baby?  What had we done in our lives that was so bad that God had to take him?  It took a while before I realized how much grace we were shown with Luke.  We were blessed in that a wonderful L&D nurse heard his murmur and sent him to the NICU.  Without her help, we may have taken him home and lost him within days.  Instead, we were given 5 1/2 weeks with him.  We were able to know him and snuggle with him.  We were also given grace in that Luke did not suffer with his HLHS.  I have seen so many children suffer with this condition and it's just not fair.  Luke was extended so much grace in that he was given the chance to spend eternity in paradise while he waits for us to meet him there.  I was blind, so very blind.  But it took a while for me to see the grace that we have been given.

’Twas grace that taught my heart to fear,
And grace my fears relieved;
How precious did that grace appear
  The hour I first believed!

In these lines, I look at the word "grace" as being our Luke.  Luke's life caused more fear in my heart than I have ever felt before.  When I looked at him, I felt panic.  When I thought about him, I felt panic.  When I slept, I felt panic.  I was a walking, breathing ball of fear.  But as soon as I held him, the fear would slip away.  I was holding my baby.  Grace {Luke} relieved that fear in me.  He was my baby and his soul had so much power over me.  It still does.  And wow, "how precious did that grace appear"?  All I can ask is, have you ever looked into the eyes of an angel?  Because I have.

The Lord hath promised good to me,
  His word my hope secures;
He will my shield and portion be
  As long as life endures.

As I said above, I was angry.  Angry at God for giving me a gift so precious as Luke and then taking him away.  And not only taking him away, but taking him away in such an awful, scary, and life-altering way.  In a way that you only see in movies or on television.  I still ask Him "why", and I will never understand until I reach heaven.  But one thing I know is that He understands.  He understands my questions and He isn't upset with me for asking them.  He knows my flaws and He forgives me for them.  He has promised good to me.  He has promised me that I will see Luke again.  He sent His Son so that I will see him again.  In His Word, my hope secures.  

When we’ve been there ten thousand years,
  Bright shining as the sun,
We’ve no less days to sing God’s praise
Than when we first begun.

Like I said, I'm no religious scholar, and I am just reading this song as Luke's mom.  nothing more, nothing less.  But this last stanza is the one that is the most difficult for me to interpret, because I can read it in two different ways:  one as Luke looking down from heaven and another as us yearning to be with him.  Luke, up in heaven, shining like the sun.  Can you imagine how brightly he shines?  And how he must sing God's praises for showing him such grace and mercy in this lifetime.  And us, waiting here on earth, singing God's praises for showing us the same grace and mercy that He showed our son.  

So there you have it, my not-so-scholarly, Mom-of-Luke interpretation of "Amazing Grace".  I don't believe in mistakes and I do believe that this song was sung in mass this morning for a reason.  

Thank you for continuing on this journey with our family.  We are continually amazed at the support that we receive from so many.  From the Luke's Legacy Boxes that people give so generously to, to friends who visit our boy's site, to a special family who brings him an ornament at Christmas and sends us the identical one for our own tree.  We are blessed.  We are given grace.  

But I must say that the most important gift of grace that we were given was the gift of our Luke.  

Our own Amazing Grace.

Happy birthday, Wittle Bubba.  You're double digits now--keep shining!