Day 270, Not much longer

Decadron. Keppra. Zantac. Ativan. Morphine. Compazine.

Every three hours.  Every 6 hours.  Every 12 hours. Nothing in sync means something every hour.

This morning, I realize we have done this so many times that we have this down to a routine, able to perform the motions without really thinking about it, even when exhausted.  Clip the tube, open the cap, insert the syringe, unclip the tube, empty the syringe, clip the tube, remove the syringe, repeat for other syringes, flush with water, close the cap.

And then we just watch Amber, while we wait for the next cycle.

Friday night, Caron slept in bed with Amber.  Amber was still talking and walking, but was increasingly tired and had vomited a couple times before bed and several more through the night.  About 5:00 AM Saturday morning, Caron calls me into Amber’s bedroom.  Amber looks like she is trying to talk, but no words will come out, just unintelligible mumbles.  We place a call to the Hospice nurse, and she is at our house quickly.  We know where this is going; we aren’t looking for the nurse to fix anything, we are just looking to make sure Amber isn’t in any pain. Heck, my signature is on the Advanced Directive paperwork, the DNR.  No parent should have to experience the pain of that signature, trying to see the lines of the pen obscured by the tears.

After administering a round of meds, Amber settles a bit and can actually form a few words – but the sentences are coming out jumbled.  She is confused, the words out of order. But her eyes aren’t confused – they look at us, no fear, just taking it all in.

By about 8:00 AM, Amber falls into a deep sleep.  At first, she is just sleeping in the living room, and receives the surprise of her Aunt Mel, Uncle Keith, and two cousins arriving from Texas!  This was one of the things Amber most wanted in her last days, and while she didn’t wake for this, we know she was aware of them.  The grandparents and Uncle Mark and Aunt Meg also come over, and we spend the day all together, with Amber.

We accept pretty quickly that she will not make it to her First Communion that evening, so we call Father Tito, who immediately comes to the house.  We pray over Amber, and while she isn’t able to receive the Eucharist by mouth, she is able to hold the pyx.

I also begin slowly realizing that there are other things I need to think about, coordination and logistics for the immediate future.  My brain starts reverting to project management mode as I think through what comes next, and I have to ask Father about a Funeral Mass and Burial.  And then I place a call to the Funeral Home.  When this happens, what is the first thing I do, what is the second thing?  On one hand, my brain clings to these things because they are structured, tactical, something I can do.  On the other hand, again, no parent should have to make those calls, think about these things.

As of Sunday morning, Amber continues to be in a deep sleep.  We’ve called Hospice a few times with questions about the medications, and they have been an incredible help. It’s less about the specifics of the medications, and more just the reassurance that we are doing the right things to keep her comfortable.  Caron, Marie, and I “slept” in her room with her overnight, watching over her.  Mostly motionless, with the occasional stretch or bend of the arm.  We watch her chest move up and down as she breathes – four or five breaths, then she skips one, every time we think this might be it.

No, not yet, not this time.  But not much longer.

I know how terrible this all sounds.  It is terrible.  We are watching our little Amber, our 7 year old daughter, die.  THIS IS NOT HOW IT IS SUPPOSED TO BE.  But still, somehow, we feel blessed to be doing this.  She is home with the people who love her most.  We’ve had nine additional months with her that we didn’t think we’d have after that first terrible day. We have these final days with her.  We are ok, in a weird kind of way.

Amber, we will be ok.  We love you, we will miss you, but we will be ok. Don’t worry about us. It is time for marshmallows, and time for you to see everyone who is waiting for you in the next life.

61 thoughts on “Day 270, Not much longer

  1. There are no words. I remember those last days of my father’s life, caring for him as he was moving out of this world and on to whatever comes next. It was both terrible and holy, a deep, sacred loving. I continue to pray for her, and for you, as she journeys to eternity.

  2. You hold one hand as the Lord takes the other. She is falling asleep in the arms of her lord and he will keep her safe util you meet again. Praying for you always.

  3. Amber has touch the lives of so many people

    Your blog reads like a book

    One day you will have your very own Saint praying for you from heaven bringing many blessings upon your family

  4. My heart goes out to all of you in this difficult time. Sending prayers for peace and comfort.

  5. Words can not express how I feel. Thank you for sharing this journey. A reminder to the rest of us to hold onto the ones we love. Cherish every moment we have with them. You are constantly in my prayers.

  6. Your words bring tears to our eyes. I am sure that there are many of us who would trade places with you beautiful daughter. As you said, no parent should experience the pain you are experiencing. You are in so many peoples prayers. God bless you all. (This is Jeremy Mish’s Aunt Deb)

  7. Amber,
    The Feeney Family loves you and is praying for you on your next journey to see Jesus and your family that is waiting for you sweet baby girl…. when I told the boys the first thing Matthew said was she’s my reading buddy. I remember reading to her. Last night when I came home from the store the twins came to me and said we have to go to the church it’s the Holy Hour for Amber.. Your family has so many that love them so we will take good care of them for you .. hugs and kisses sweet girl.

  8. You are all foremost in my thoughts and prayers. Above all, I wish for a peaceful transition for Amber. I am certain she is aware of all the love surrounding her.

  9. You are sending Amber off to heaven with love, in her own home, surrounded by family. What a beautiful gift you are giving her. We are sending our prayers; it’s a sacred role to be the ones to support the transition from this life to the next. (I felt it with supporting my parents and I know you are feeling it too – the sorrow and the Grace.) Many prayers to you during this time. Hold onto all the love you see flowing your way from those of us who admire you & Amber, and your family’s journey. Prayers and love from NC.

  10. God did bless you with a lovely fun loving little girl —- she is a joy in your life — God and the Angels enjoy her now. Sorry for the loss you will be in my prayers

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