Tears in Heaven

I think most everyone alive has heard the beautiful, heart saddening song "Tears in Heaven" by Eric Clapton.  He wrote that song after his 4 year old son, fell out of a 53rd floor NY apartment window. I think any parent, or person with a heart can cringe at the thought of their (a) child dying. Probably would be at the top of most peoples worst fears list.  Sadly, like Eric, I too lost a child.

A few years ago I started a little blog about him and the process of dealing with the death of a child, but I stopped blogging after a few posts.  I was not sure anyone was even reading it and wondered what advice or knowledge could I personally give.  My child died, it sucks, the end!!

As time has progressed my husband and I have moved around a lot, and every time we move comes the inevitable elephant in the room, that of course no one except us knows is even there.  I am very open about our experience but I always feel bad recounting it to new friends because at the end of the quick synopsis that person is left speechless.  And then the awkward "I am so sorry" and then my awkward response" oh no it's ok it's been 8 years we are moving on."  As I have had to re tell "my story" a hundred times I have come to realize that through my 14 month experience with my son I never really wrote about it in my journal.  I remember my mom or dad or both continually telling me to write things down as they were happening and In my head I was thinking, I don't want to remember.  It's going to be too painful to look back at those sad entries and drudge up my old wounds.

Well, Feb. 12, 2014 marked 8 years since Alex's death and I feel in such disbelief it has been that long since I last saw my baby take his last breath on this earth.  Time is slipping away and as my 3 children continue to grow up they are becoming more interested in what really happened to their older brother and I want to have something to pass down to them so that one day they can read and learn about the life their mother, father and Alex lived before they entered into our family.

I was driving back with my kids from a trip and I needed some "me time" so I stuck my headphones in my ears and turned on Pandora.  Then the song "Tears in Heaven" came on.  I, of course, have            
listened to that song a hundred times before and always knew the origin of it, but I never really listened to the lyrics and emotion behind it. But today since I was trying to tune out my kids I was able to really listen to the impact of this song and for those 4 minutes 31 seconds I could hear and feel the loss (sadness) yet acceptance Eric found.  This moment was powerful to me because it is how I have felt for 8 years.  Sadness yet acceptance.  Those two emotions are a very interesting combination.  A few of the lyrics that are just so powerful to me were:

"I must be strong
  And carry on,
 'Cause I know I don't belong
 Here in Heaven

"I'll find my way
Through night and day"

"Time can bring you down,
  Time can bend your knees.
  Time can break your heart
 Have you begging please, begging please"

"Beyond the door,
 There's peace I am sure
 And I know there'll be no more
 Tears in Heaven"

Those words may not resonate with you because not many have walked in my shoes but for those of you who have or will or want to know I could not have said it better.

My Alexander was born December 18, 2004 and died February 12, 2006.  He was 14 months old when he died.  At 8 weeks he was diagnosed with a rare liver disease called biliary atresia.  We tried multiple surgeries to help his liver to better function but sadly all the efforts made were not powerful enough.  He was placed on the liver transplant list in November of 2005.  He was strong, vibrant and healthy otherwise.  He was laughing, moving, playing, even almost saying "momma." Elmo seemed to bring the most comfort to him.

As it became clear his insides were slowly dying we still had high hopes for his future.  I prayed and prayed that we could celebrate his first birthday and Christmas at home, and not on the surgery table or hospital.  The Lord was so merciful because my prayers were answered.  Alex had his healthiest month, since he was diagnosed, that month of December.  We were so happy and have pictures for us
to reflect on that time to prove it.  But sadly I had this nagging feeling Alex's time was coming to an end.  As I would relate my feelings everyone dismissed them as thinking negatively or losing
hope, but when I would try and picture my future I could just feel he wasn't going to be part of it.  Randomly one night little Alex was not acting normal.  We had just gone to the hospital for a check up a day earlier and he was fine, everything checked out "normal" so we thought maybe we was just coming down with a cold.  For a liver baby and illness could be devastating so the liver doctors told us to come down (3 hour drive). By this time he wasn't acting right, like he was losing his mind.  It was scary and weird.  As I picked him up to put him in the car, for just a brief second he stopped and
hugged my neck so tight, for just a moment his mind had stopped.  As I relished his hug the thought came to me, I think he is saying good-bye, this could be my last hug. I quickly brushed it off as being paranoid and then his episodes of acting not normal continued.  As we finally arrived to the hospital Alex had bitten his tongue and was bleeding everywhere.  We had no idea what was happening.  We rushed him in and they immediately intubated him and then put him on life support. Here he was just a day before his normal self and now unconscious and on life support. It was so surreal.  Apparently he was getting too much ammonia to his brain which was causing his "non" coherent episodes.  This was a sign of liver failure.  As Cliff and I came into the ICU the next morning (you are not allowed to sleep there) they were doing chest compressions as if he were dead or dying, but they told us they were just switching life support (making it sound like it was normal) but come on, I was young (24) but not
stupid.  I knew things were bad at that point, but all the doctors kept trying to put on an optimistic front.

That night I dreamed of Alex and he told me it was time to let go, that he was already gone. I of
course woke up sobbing and told my husband my dream.  Cliff told me that we needed to hang on a little longer to see what his chances were of really recovering.  At that point percentages are what Cliff wanted to hang onto.  A few days passed by and it looked as if Alex was getting stronger.  They were able to take him off the major life support machine and "down grade" which was actually a major milestone. We felt maybe this was it, he was going to make it and I felt that once again I was wrong and just letting my fears take over.  That night we went to the Ronald McDonald house feeling hopeful.  But then Cliff had a dream and in that dream Alex was pulling out his life support tube and told his dad he needed to go.  When Cliff recounted the dream he felt resigned to the fact that he can let go if his odds of recovery were low.  We hung out that day in the hospital again feeling hopeful things could turn around and that a liver would become available.  I had just taken my sister to the airport and on my drive back apparently Alex had a seizure, which is not too uncommon for this situation but they wanted to do a CAT scan just to be sure.  Devastatingly, it was discovered that Alex had become brain dead, it was so bad that if we were to do a transplant he would merely be a vegetable, there was no way to recover from the severity.  None of the doctors saw this coming.  He was having "normal" bodily movements and eye response, but sadly that was the part of his brain that was not damaged.  He is believed to have become brain dead when they transferred him from the lesser support to the mega support (oscillator), the time when we walked in and they were doing compressions on him. That night was when I had the dream, so my poor little Alex had been brain dead for a week before we found out.  I was right all along.  Alex knew, I knew and the Savior knew it was his time, and now finally Cliff knew.

I can't even express how sad it was to remove those tubes from his tiny little mouth, knowing that at any moment I was going to watch his last breath.  But I felt grateful because for a year I had prayed and prayed that if Alex were to die that I wanted to be with him.  I didn't want him to go on a surgery table with a bunch of doctors or during the night when I couldn't be there.  I was there, and Alex didn't have to endure another surgery.  His suffering was coming to an end and mine was merely beginning.  Watching the process of death is not peaceful or quiet or silent.  It was awful, he struggled to breathe and so you could hear the gurgles in his lungs and he just laid in his daddy's arms still, but with loud breathing.  I hated every moment but yet wanted him to hang on but wanted it to be over.  45 minutes had passed by and I was mad in my head at god.  Just take him, please this is awful.  I was swearing in my mind because it was so unfair to have to be there enduring such pain.  Then quietly a voice told me that i needed to tell Alex that I was ok and that he could go.  So I got down on my knees and kissed his cheek and whispered in his ear "Alex it's momma, it's ok for you to go, I will be
ok, I love you." And with that final spoken sentence to him he drew his final 3 breaths and his spirit left his body.  He stayed for me! Here he was knowing he needed to go but he stayed for me.  How selfish I felt and yet it gives me such overwhelming feeling of gratitude to know how much Alex loved me and loved his dad.  He didn't want to let go of us as much as we didn't want to let go of him.  But we all knew that was Alex's journey to fulfill.  How envious I am of his reunion.  I wanted to be part of it, but as the song reminds me "I don't belong here in Heaven"

Our trials and our triumphants  mold us to who we are.  In a way they define us.  My experience with Alex has defined me or shall I say, redefined me.  It is at the center of everything I do and think.  Some days I feel blessed and other days I don't. But someone has to go through these experiences so instead of saying "why me" I need to remind myself "why not me?" Why should I expect someone else to have had to go through this? Why do I expect to be picked over for a trial so difficult it has nearly at times broken me.  But I know that I am not special, I am not extraordinary.  I wasn't specifically chosen for this trial because I could "handle it." Let's be honest we all would crumble at the thought of the death of our child.  What I do know is that I am just Courtney Luff who happened to endure her child dying.  I don't resent it, and I have never been bitter because of it. I have been sad, frustrated, confused, angry, lost. Haven't we all.

I don't want you to read this and feel bad for me or even sorry.  I don't want you to look at my story and then think "well I thought I had it bad, I am grateful for my life" because I don't think we should look at others despair and use it as a tool to lift ourselves up, but we can use it as a tool to lift others up.  Because the fact is I have a lot to be grateful for.  My life is blessed in so many ways.  And when I read other peoples stories of tragedy or trials, I never stop and think "oh I guess life could always be worse" to me that is so insensitive to that person because it's almost degrading their blessings despite tragedy.

If I could have 1 wish granted it would be obvious to say I would wish Alex back but the reality is I wouldn't because "I carried on" and have 3 beautiful children because of Alex.  I have an understanding and empathy of life because of Alex.  And I have hope and faith because of Alex.  If I let go of my faith in my Savior then I am letting go and giving up my hope of being able to see Alex again, and I am not willing to do that.   He gives me strength every single day to be grateful and to remind me what direction my life needs to go and that is towards my Savior which in turns leads me right back to my Alex.  "Then there will be no more tears in heaven."