Thursday, November 8, 2012

The day he died.


We don’t really ever understand death until be moment we are staring it right in the eye.  I never once  thought I would ever watch my child die – right before my eyes. Gavin's death was unique.  Unique probably isn’t even touching the emotions that lurked in his cold hospital room on that November day just three years ago. 

I thought I had it all planned out.  I had a vision of the way I wanted Gavin to die.  After all, if God wasn’t going to give me a say in determining his fate, I for sure wanted to take control over the style in which he would pass.  I wanted so bad to hold him as he took his last breath, in a beautiful moment between mother and son.

It didn’t happen.


On November 6th, after Gavin had not taken a breath on his own in more than 48 hours, the decision was made in accordance with the DNR Adam and I had put into place, that it was time to say goodbye.  We lifted Gavin’s swollen body off his bed with the vent attached still breathing for him and had one final moment as a family.  We had Madison come in and say goodbye to her brother, as I held him in my tired arms, with tears pouring out of my soul.  I remember not getting the response from Madison I wanted – what I thought I needed – what She needed.  She didn’t understand.  She had no concept of the fact that this would be the last time she will ever physically be able to see her little brother.  She was four years old – of course she didn’t understand.  I wanted to make that memory for her – but looking back three years later, she never even needed that moment – her memories were already made.  


We asked everyone to leave the room for one final moment with our baby boy.  The pain was so intense.  My soul ached so deep as if it was being ripped away from my flesh – in a way I guess it was.

The doctors came back in the room to watch as the ventilator was removed.  My groans filled the room as the doctors were preparing to call his time of death.  But this is where his story took a dramatic turn.

After removing the ventilator – he didn’t die.

In fact, he started breathing.


Talk about dealing with plan B after pouring your soul into Plan A, right?

I could never have imagined what would happen in the next 52 hours that would test my faith in all things God.  

Inhale. Exhale.  The breaths just kept coming.

Just a few hours after life support was removed Gavin was sitting up in his crib thrashing from side to side.  You see, he was breathing, but it wasn’t effective and he basically began to drown in his own fluids that were starting to fill his little lungs.  He would wake up with severe air hunger – panicked, scared and in respiratory distress.

This is were the battle began.  He was in severe pain.  Not only was he in respiratory failure but he was in multi organ failure.  His body was dying and it was painful.  His mind was delusional, in a psychotic break.  He needed to be medicated to eliminate his suffering, yet every time we would give more meds his lungs would fill a little bit more.  He would go in cycles where his oxygen would stay up in the high 80’s and then drop to the 70’s.  Each and every time he would cycle we would embrace him and say good-bye.

Over and over.  The anguish each and every time was just as raw as the first time we said our goodbyes.


This lasted for 52 hours.  Did you read that?  Do you understand that?  52 hours of watching Gavin drown right in front of our eyes.  By hour 50 the room was filled with a sound that still chills my soul.  Inhale.  Exhale.  It was as if a fright train was nearing.  His lungs so full they were beginning to overflow out his nose and mouth.

Yet he still fought through, desperately trying to get air.

By hour 51 he had finally found peace.  His oxygen saturations were in the 50’s and he was gone, though his heart still was going strong.  We were exhausted – trying to stay awake so we would not miss one sound of his breath.  I sat at his bedside and fervently ran my fingers through his blond hair almost pulling it at the roots,  my other hand pushed firm on his chest feeling every beat of his heart.


I remember vividly feeling his heart stop. 


Total and complete peace.

If you’re still reading and haven’t needed to step away I want you to know this.

We are still alive. 
Our souls are still thriving. 
We have been restored.

As I said in my last post, you may never experience anything like this but you will experience pain.  Sometimes the healing we all so desperately pray for doesn’t happen in the manner we pray for it to happen.  Sometimes we can’t hold our children as we say goodbye and embrace them as they take their final breath.  Sometimes our plans for both life and death don’t pan out – but it doesn’t mean the plan went wrong.


God used those last 52 hours with our son to do amazing things. Many of which are not even possible to put into words, as they were moments that formed and shaped our souls – going way beyond earthly events but bridging over into the spiritual.

After we touched his lifeless body one last time we walked out those hospital doors.

Life was forever changed.


On November 8th 2009 at 10:52pm Gavin took his very last breath here on earth and received the healing and peace he deserved.  

On November 8th 2009 at 10:53pm Adam and I began our healing.

Healing is possible.


APMKEH8906 said...

i dont have children (im 21 although people my age do! haha) but i have lost 3 friends in the past 6 years. 2 of them were a few months apart one more unexpected than the other. it took awhile, a few years to finally be ok. thank you for your strength. ive followed gavins story for awhile now. know im praying for you guys! especially today.

Holli Taylor said...

What a powerful post. Your faith is evident, you words as clear as day. Thanks for sharing your soul.

martha said...

I have followed your blog since the beginning and i sit here with tears streaming down my face today but i always end with a smile. You are simply amazing and your undying faith is awesome. You always find the good in every situation. I will keep you, Adam, Maddie,Jayden,Angela and your sweet Gavi in my prayers today.

trisha pauleon said...

Lots of tears streaming down my face. I don't know what to say as I'm in 11 wks into the death of my precious daughter. The pain is unbearable some times and I wonder if healing is even possible.

Thank you for sharing I'm sure it wasn't easy for you.


Laura said...

Thank you for sharing about your sweet son Gavin. You have taught me so very much through your Grace and Faith.

Sonya Marie said...

TEARS ARE FLOWING! I am so sorry for your pain and loss. I understand grief, I just lost a sister to cancer. Thank you so much for such a powerful post.

J Davis said...

I've been reading your blog since Septmber 2009. I've read every single post you've written since then. I feel like I've laughed and cried with you many times these last few years. When my fails struggles I think about and your family. Over the years when I have had to grieve I've thought of you fighting it out with God on the treadmill. The providence in timing when Angela came into your life, then dear Jayden. Reading gleefully about their progress. Cheering when you were finally able to share their faces. Watching Maddie grow up into such a dynamic young lady! I share your story often. You've inspired me. My three children do not have special needs, but I wanted to find a way to help. I volunteer at an Equine Therapy Center for children with special needs now. It's only been since June, but it's changed me in ways I never considered.
I'm a 36 year old mother in the Atlanta-metro area and Gavin has made sure that my life will never be the same.
God Bless Your Family

Paula said...

Karen, I'm honoured to know you and Adam (even if only via the interweb).

Your lives show Jesus more than most.


Mo said...

Let my tears tell you this is one of your most beautiful posts...

Carrie said...

Thank you for sharing, often people view grief as something so secretive when it should not be. You should be encouraged to talk about your pain and your loved one. I lost my father and grandmother when I was 12, only a few months apart. I recovered, it still makes furious honestly about what life may be like if I had my father even though it has been 23 years. But I survived,you just do. We then lost 6 members of my family in a 2 year time span when I was in college, I survived. My husband clicked on your blog while viewing mine and was upset. He said that he could never survive the loss of one of our kids. I asked him not to say that because as scary as it may be it happens and you do survive. It is not pretty, it is dirty
and messy, but you do survive, you have to.

That said, everyones pain is differentand everyones experiences are different.

Phyllis said...

I remember reading this in disbelief three years ago as it was happening. I cannot imagine those minutes ticking by and adding up to 52 hours of watching your little boy suffer. I don't think anyone can truly know what you went through. In the past three years you have shown me and many others what God can do in our lives if we allow Him. You have been a shining example to trust Him, and to praise Him in all situations, not just the ones in which He answers prayers the way we want him to answer them.

Anonymous said...

Thank you for your honest, powerful post. I have followed your blog the past three+ years and I can't tell you how much of an inspiration your family has been to me. Our son has Epilepsy, and your posts have helped me to grow stronger and stronger. Your children are so blessed to have you and Adam as parents. God is so good. You are a true inspiration. You know Gavin is so proud. Thanks for being a bright light to share God's word. Praying for you and your family on this day and the days to follow.

Esther said...

I am still crying as.I type.this... my son died in his sleep at 8weeks old. no warning signs, no illness, just gone in the blink of an eye it seems... I still remember my horror when I woke up to find him.... he was my first son... I am 31 weeks pregnant with my third... I pray every day for all my children and I am somehow comforted by your strength and sense.of.peace... God bless you and your family... we'll see our boys again someday...

Missy said...

Thank you for sharing this very private moment...Gavin's last hours here on earth.

Thinking of you all xxx

kyna said...

Love you...

Chris, Molly, and Baby said...

Thank you for sharing. Just 13 days before your sweet Gavin died my little girl June died on 27 Oct. 2009. And our little girls death didn't go the way I had wanted it to either. She had SMA which is a terminal disease and I had thought about her death and envisioned it happening differently. Her final day has played over and over again in my head and heart and I have anguished over it for the past 3 years. I had planned and expected our daughter to struggle to breath after removing the ventilator. I was not prepared for her to die as soon as they removed the vent. I beat myself up daily because I had just assumed she would continue to fight after the ventilator was removed. She had been breathing above the vent. But she didn't. I was devastated.
Until one day in counseling I heard her and God say, "it happened the way it was supposed to." I had worked myself into a post traumatic trauma state with questioning everything about her last day until I heard that voice say that.
Thank you so much for sharing your last hours with Gavin. By you sharing you are comforting and helping those of us who have experienced the death of a child. I know I can come to this blog and that you are someone who understands a bit of my pain and there is much comfort in that.
thank you

Anonymous said...

Karen, I have been reading your blog for many years now, ever since I found that we both had a Maddie and a Gavin (ironically, both with dynamic special needs). And each year I sit at my computer and sob as I read your memorial posts to Gavin, just as I cried the morning I read your post announcing his death. He has touched so many lives, even in his death, that I know you must be incredibly proud of him. Your words continue to give so many people hope and inspiration. Thank you for continuing to share his story and to allow the world to watch the rest of your story as it unfolds. Love to your entire family - Erin

Marie24 said...

Your writing is beautiful. You truly have poured out your heart and your soul. Gavin was fortunate to have such loving parents as yourselves. God Blessed you with Gavin because of what special people you are. Keep the faith and I will keep you all in my prayers. God Bless.

Michelle said...