Our Final Day

Monday, June 5, 2017

*disclaimer – these posts are for me to remember.  This one in particular may have descriptions or images not everyone is comfortable with.  Feel free not to read.  I’m going to write without restraint or thought for anyone except myself.  This is my journal of life and our reality was in some ways horrifying and in other ways beautiful.  This is my story of my last hours with my daughter and I don’t want to miss a single thing.

It was a Monday.

Things had been quiet and still through the night.  Although the sound of her lungs had grown very disturbing.  She sounded like she was drowning.  She had greenish foam coming up her throat and out her mouth so we had to turn her on her side to be able to keep it cleared out.  It was absolutely horrible.   There was a medicine that we had been giving her to try to help with that but we had been told to put it on the wrong spot.  Because of our fiasco with hospice the day before, the nursing manager was the one who came to visit that morning and once we got the right information, we administered the medicine, a lotion of sorts, behind her ear instead on her neck like we had been told and within 15 minutes all of that cleared up.  I’m still, and always will be amazed at how God made our bodies work so intricately.

Because Laila’s stats had remained the same for about 18 hrs, we told the big kids we thought it would be ok if they went to school.  At this point it looked like it could be days of waiting and they were OK with not sitting there staring and waiting for their sister to die.

My thoughts…. my thoughts were so different than I had imagined they would be.  Jackson put it best when he told me he felt there was no good answer.  Praying for her to stay meant pain for her but praying for her to die meant we would be without her.  So very right, my wise little buddy.  But honestly, I was more scared that she would stay.  I hate to even write that now because I would give ANYTHING to have one more hour with her.  Sometimes my selfish thoughts ask myself why.  Why didn’t I take her back to the hospital one more time.  Why didn’t I try one more surgery.  Why.  The answer is so clear.

It had become about me instead of her.  I had already put her through one more surgery than the doctor actually wanted to do.  I had taken her to the hospital only to have them shrug their shoulders with no more answers than they had been giving me the past several months.  I wanted her here and I was willing to do anything it took to keep her, even causing her pain.  And honestly in my worst moments right now, I would let her be in pain again to feel the warmth of her tiny fingers.  I would let her yell at me just to hear her voice.  But God was very clear to me when my own heart was and is deceptive.  He said it was time to let go.  I had to put my pain in place of hers.  I had to do what God was calling me to by stopping the fight  and letting Him take her.  Oh God, this is so hard.

Throughout the day things were pretty quiet.  Jack and I remained curled up together in our over-sized recliner in her room, just staring at her and holding each other.  I can feel the quiet and peace that was in that room.  Words can not describe it.  Just the still sound of the machine in…and out….in….and out.

And that room.  There was an anointing on her room.  It was a place of refuge and a place of peace during those days.  Once her pain was under control on Sunday, it just went still.  Those few who had the privilege to enter it felt it too.   It was definitely supernatural and I believe it was all the prayers that all of you were praying on our behalf.  Or maybe, old testament donkey style, there were angels in there that we could not see keeping guard.  (google it, it is a real thing!)  Whatever it was, it was from God.

We realized that we had been praying individually, but we hadn’t gathered warriors around us in prayer.  Not in our own strength or even brain power, we had decided the best thing was to pray that God take her soon.  We saw nothing changing and we hated the thought of watching her like this for days on end.  So, we invited you all in on the situation so you could pray for us.  We let ourselves be vulnerable because that is what we felt God calling us to do.  We shared our horrible reality and asked you to pray.  Then we let our church staff come over and huddle around her and pray with us.  And then the hospice chaplain stopped and prayed my very favorite, Psalm 139, over us.  It was beautiful.

Not much later we started to see her heart rate slowly climbing again.  She had been hanging out in the 160’s but slowly crept up to the high 180’s over a few hour period.  We also started to see her oxygen level slowly decline from around 90 into the low 80’s and even 70’s. We were watching for her respirations to decrease but they stayed about the same amount but she was definitely taking shallower breaths.

We called my mom to go pick up Emma from an after school event she had gone to in another town.  We told her that if we saw any changes, we would have someone bring her home.  She was hesitant to go in the first place but we told her if Laila had the choice between staring at her and racing go carts and bowling, she would’ve left Emma in the dust.  She had such a spirit of joy and adventure for life.

Jack’s sister’s family stopped by.  They were here for a very short time before I started watching the numbers on the monitor rapidly start to decrease.  I told them I thought it was time to let Laila rest and they kissed her goodbye and left.

We called Emma, Jackson and RJ into her room to tell them we thought it was time.  They kissed her and each did what they were comfortable with.  Emma and RJ left the room and Jackson stood right beside her, holding her hand with Jack while I laid next to her.

Within minutes she abruptly stopped breathing.  It wasn’t what I expected.  I expected her breathing to have longer pauses in between and to have more time.  This was what I had obediently let myself pray for but suddenly a panic ripped through me.  I begged her to breathe again.  Sobbing and crying in my own pain.  There is physical, uncontrollable pain when you watch your child leave the world you are in, never to breathe again this side of heaven.  It is absolutely horrible.

I sobbed and cried in a way I never thought possible.  Emotions have always been a struggle for me.  I even went years without actually being able to cry.  But this.  This was the first time in my life I sobbed and wailed and I just could not stop.  I was scaring Jackson.  He started telling me to breathe because he could see I was hyperventilating.  In my head I was telling myself “stop, you are scaring him.  pull yourself together.”  But I just couldn’t.

Finally I starting frantically pulling the tubes out of her.  The tube for oxygen in her nose.  The tube attached to her stomach draining out the blood that was pooling in there.  The tube draining her bladder.  The tube pumping all the pain medicine into her.  I pulled out everything and scooped her up into my arms and cradled her.  And the sobbing stopped.  I could breathe again.  I just needed her in my arms.  I needed to feel her and soak up every bit of her because I knew this would be the last time.  I know she wasn’t there anymore but it didn’t matter.  To me if her body was there then I still had a little bit of her left to keep.

Before she passed away I took her temperature….106.9…. I had to take it a few times to make sure I read it right.  Can you even imagine?  But can I tell you something?  We held her and rocked her for quite some time and she stayed warm.  It sounds crazy but that fever was such a blessing as we said goodbye to her body.

6:43pm on May 22, 2017, My beautiful daughter entered the kingdom of heaven.  It was just the six of us here which was the way we wanted it.  In the days leading up to her death, I now realize that Laila had visits from each of her her grandparents, all of her aunts and uncles, most of her cousins and a few of her very best friends.  We didn’t plan it that way, it just happen.  Well, God made it happen.

We called our parents and Tammy and gave them the option to come and say goodbye to her since we had decided to have her cremated and we knew we would never see her physical body again.  I carried her poor little body and put her on the stretcher when the funeral director came.  One last time cradling her and carrying her.  Now she carries herself which is beautiful comforting thought.

Two weeks ago today we watched our daughter be wheeled down the sidewalk on a stretcher and we never saw her again.  I honestly still can not fathom it.  I cried myself to sleep and slept all night from the exhaustion of it all.

The days that followed have been a blur.  There was funeral planning and baseball games and 8th grade graduation.  There are tears and sorrow and unbelief of reality and beautiful reminders of God’s faithfulness.  There is grief and anger and joy and sadness.  It is all there.  Sometimes within minutes of each other.

This is our story and we claim it as beautiful.

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.