Friday, 28 June 2013

Another Night Shift

I think I'll start calling my sleepless nights, the night shift.  Even with the help of medication, sometimes my pain is too intense to quiet.

I'm sure the pain tonight comes from a few sources.  My day started out well, taking Sadie to her beloved music class.  She sang her heart out and had a blast as per usual.  Sadie and I had a mommy and daughter date at McDonalds too.

After lunch we drove to the Children's Hospital to visit a friend and her daughter.  On the drive there, I felt sad and talked with Sadie about how much I missed Hope.  She informed me that I would be happy when I had a new baby.  Always putting in a plug for the new sibling she wants so desperately.  In the parking lot, I walked past license plates and vehicles that I had memorized as I used to pass by them each morning.  Families that had also been at the hospital long term, ones that still had a reason to be there.  As I walked into the unit I saw the nurse practitioner that had followed Hope on the purple team.  She was an absolute gift and also the best one to draw blood from Hope's scalp.  Seeing her brought on the teary eyes.  I passed a few nurses that I had not seen and was able to hug, some that were excited to see Sadie again too.

Sadie and I visited with our friend and her daughter that continues to struggle for her life.  We sat next to her twins and fed one of them as his brother slept.  I've spent so much time in the hospital, it's almost a familiar comfortable place.  Perhaps the fact that we'd spent the most recent part of our journey in the ICU and not on the ward made the difference.  I was okay being there, in a hallway that Hope had spent the greatest portion of her life.

Sadie and I left after only 30 minutes.  I know it's good for me to get back there and I do miss so many of the staff.  I just wish I had a reason to go everyday still.  The onset of this long weekend does not help.  We lost Hope the day after a long weekend.  I remember feeling like we were missing out on a long weekend because Hope was in the hospital.  Now I wish I could spend this one there.  I was so burnt out, I spent hours of that long weekend out with Sadie while Shawn cuddled Hope.  Time he'll forever cherish and I'll continue to miss.  I wish I had known that Tuesday morning that it was our last day.  I would have fought to get on the plane with her.  I would have stopped them from intubating her until Shawn was able to get there and hold her again.  I wouldn't have put her down, not even to use the washroom.  If I had known, I wouldn't have been able to look at her face like I did that day.  I would have been crying too hard to see her beautiful eyes through my tears and her chin that stuck out so sweetly.  Maybe ignorance is truly bliss.

Yesterday I went to donate blood for the first time.  I'm not a fan of needles and I would not describe myself as strong.  I can become light headed and exhausted quite easily.  I brought a friend along for strength, but also to ensure one of us could drive home.  As they poked my finger to test my blood before beginning, I thought of Hope.  Each time they wiped her heel with alcohol she knew the poke was coming.  As I waited for it myself I realized that waiting for the poke was much worse than the pain.  She had it done so many times that she knew right away, even as a newborn.

As I sat in the chair, my blood pouring into the bag, I thought of the numerous times those bags of blood hung next to Hope.  I looked around the room at complete strangers that had given their free time to come and donate blood.  Many strangers, just like the ones around me, had given 20 minutes of their time and given us 13 months with Hope.  Without the gift that each person made, we would have lost her many times over.  I wish I could personally thank every donor whose blood was pumped into my child.  I thanked one man on the way out, but could not properly articulate how I felt.  It made me want to go into high schools and rally 17 year olds to start donating regularly.  If everyone who was able did, there'd be no shortage.

A long weekend, a trip to the hospital and donating blood.  The deadly combination that puts me back on the night shift once again.  I ran my hands over the sleepers in her drawer tonight.  Spent time looking at the brand new clothes, hanging in her closet that will never be worn by her.  Stroked her crib that she spent too little time in.  Moved pictures of her around in the house.  Looked at medical supplies we had no purpose for.  Folded laundry and once again longed for her clothes and blankets to be included.

No matter how deep the pain of losing Hope, I cannot stop remembering how deep God's love for me is.  I read in a book tonight that God is not far from the brokenhearted, he is closer than ever as we need him more than we ever have before.  I hate that Hope died, I hate that she suffered when she was alive. I hate that I will always be a mother that is missing one of her children.  Yet, I cannot hate God and truly do not feel angry.  Without the Lord, I would have missed out on so much more of Hope's life.  He gave me the strength to get to the hospital.  The strength to sit and do nothing for hours with a person that never spoke and often did not smile.  God gave me a love for a child that I knew from the beginning could be taken from me.  I don't question why God allowed Hope to be born broken, I can see the evidence all around me.  Hope's life made an impact, people's hearts were turned to God.  I don't understand why she had to die, maybe I won't until I see God face to face.  Regardless, I choose to trust the God that has carried me this far and believe that he will continue to carry me until he carries me home to be with Hope.  Without God, there is no hope for tomorrow.

120 comments:

  1. Amy, Shawn, Sadie

    I'm lost for words. I feel so much for you and have no way to properly express it. Just know I'm praying for you and wanting and willing to do anything I can

    ReplyDelete
  2. Debbie O. Craft28 June 2013 at 01:08

    Such a beautiful message Amy, one that touched my heart. One that is causing me to be more thankful. The physical pain I feel can be something to praise God for, it means I am still here and I have a purpose to complete here on earth. Hope accomplished great things in her short life and has impacted many more people than we can even imagine. The pain we feel now is a moment in time compared to the wonderful future we have when we see the Lord face to face and reside in His heavenly home He has so graciously prepared for us. God bless you Amy. I hope you will some day publish this beautiful and heartfelt blog. God used Hope in a mighty way to draw people to Himself and He is using you, Shawn, and Sadie just as much.

    ReplyDelete
  3. Choosing to trust has been HUGE for me through losing Eva. I understand what you say when you say you wish you had a reason to be at the hospital again. I went to the cardiology clinic at the Stollery for testing of my youngest son 2 weeks ago. I wished that I had a reason to see those nurses and be there regularly with Eva. And I remember so clearly her last days...if I had known they were her last I would have video taped every moment. Never put her down, savoured her smell...and when I give blood now, I always think of Eva and all the pokes she endured...I close my eyes hold my daughter close as the needle stings. I'm awake with you tonight Amy.
    Hugs, Em

    ReplyDelete
  4. Dianne Ducheno Johnson28 June 2013 at 01:34

    Hi Amy

    Randi has said it all saying " I am lost for words. " My heart still aches for you. Hope brought so much love & life to so many. The faith many have received in God through Hope & yourself is tremendous. May God forever be with you, Shawn & Sadie as the years go on. Let us all pray together for many donations of blood & organs in Hope's memory. Daily prayers for each of you and asking God to give you the strength to carry on each day. ~HUGS~

    ReplyDelete
  5. Amy, if you are anything, you are STRONG. I think when we show our vulnerability, that is also coming from a place of strength. And you've inspired me to give blood at the first opportunity.

    My heart is with you and your family.

    <3<3<3

    ReplyDelete
  6. I hate that Hope died, I hate that she suffered when she was alive...Yet, I cannot hate God and truly do not feel angry.

    Wishing you peace and healing.

    Thank you for your courage in sharing your words, especially those I quoted above. They helped me more than you can know.

    ReplyDelete
  7. Thank you for continuing to share your journey with us. I think about Hope and your family daily, and my heart is broken for the pain you and your family have suffered.
    I will encourage my friends and family to give blood and to continue to give blood, thank you for the reminder.
    I think it is a beautiful idea to rally highschool students to give blood, and I think you should follow that instinct! A blood drive in Hopes honor.

    please know that Hope will continue to be in my thoughts and prayers and so will your family.

    ReplyDelete
  8. Amy, you don't know me. I have been following your blog ever since I saw it on my friend's Facebook wall. I have shared your story with some of my own friends, hoping that it will bring them to know Jesus.

    I sobbed as I read these last few blog entries. "Agonizing joy" is what I feel to know Hope finally has her new perfect heart. I don't even know your family, but simply reading your testimony has given me a deeper yearning to be perfectly united with Jesus in heaven.

    Thank you for sharing your own raw heart with complete strangers.

    ReplyDelete
  9. I know what its like to wish we would have known how long we were having them here with us for. I have lived many nights wishing I would have done things differently. Sacrificed more slept, video'd more, taken more pictures. Those what if's is usually how Satan gets to me the most. Praying for you now.
    One thing that helped me sleep at night was Trazadone. Its an anxiety/sleep med that is the only thing I can do to shut my mind off at night. Ambien only works for too long. People suggest natural sleep stuff- that does not work for someone that lives for another moment to be with the baby again. I know this for sure. Thanks for writing - it helps us all to heal. I wish I would have done more - but was scared to get to vulnerable or that people would just get bored of hearing the same old thing. I miss our nurses at Seattle Children's. We were only there for 3 weeks , but I long for that friendship still. Its the only people who understand what "we" truly go through. Its easier to relate, sit and feel. My husband hates to go back- but we get to go back and give them hope, a smile, a hug and comfort. Its our "new" mission field. There is a really good magazine online that is called Standing Still. It may bring some comfort. My favorite book read during this time is "Grace disguised"

    ReplyDelete
  10. Amy, have you read any of Mitchell's Journey on facebook? Mitchell is a sweet little boy who passed away in March. His dad is an amazing writer and I think that reading some of his words may possibly comfort you. Praying for you!!!

    ReplyDelete
  11. Amy, again/still, I am moved by your combination of raw, real pain, and unwavering faith in God's goodness. Thank you. Your testimony is making a difference.

    ReplyDelete
  12. Amy thanks for sharing your true feelings once again they encourage me to have real feelings something I have only started doing in the last 10 or so years of my 41 years. You are an encouragement. We are praying for you as often as we remember.

    Naomi Host of The Butterfly Gang

    ReplyDelete
  13. You are all in our families prayers. I am so touched by your encouragement to not waste our moments. I pray that your memories are like a wonderful sweetness and that even the smell of your baby girl would be this wonderful memory to come back. You are affecting so many with your hope! Love to you from our family.

    ReplyDelete
  14. Amy,

    Your words never fail to bring me to tears, and they never fail to bring me so much peace and an even greater faith in God.

    Thank you for bringing Hope into my life, and thank you to Hope for bringing me back to God.

    Love and prayers always,

    Sarah

    ReplyDelete
  15. Amy, I still think of you and your family daily. I still think of Hope all the time and I will never forget how that beautiful little girl touched my life. She is a constant reminder for me to cherish every moment with my family. Thank you so much for sharing with us.

    ReplyDelete
  16. Its a tough time to live in the land of grief & mourning no matter who u lost. Which still seems like yesterday. I don't think u will find but a select few that r not in pain & anguish & so full of questions as we clench our fists & scream to God. just as u Calgarians are mucking out urselves from the flood waters & mud . That's sort of wat those that r living in land of grief & mourning. There's the flood waters of our tears. And oh how easy it is to get stuck in the heavy muddy memories of the way it used to b before our precious loved suddenly was gone. some days it's pretty tough walking as the those burning memories is like a back pack of ten pin bowling balls. strapped to our bag as we trudge at a glacial pace. my late mom & bf used to say to me " it's a great life if u don't weaken!" never understood that until she passed! As I said before Amy, ur Hope is a young lady now! & since she left you, she has been praying for u her mom, for Shawn her dad & for her big sister Sadie. I have to take two sleep gels in order to sleep or my wheels in my head will b forever spinning as I second guess myself! maybe I should've or could've or would've then next thing u kno I have a splitting headache! Just don't let Satan talk & walk u into a much harder journey of grieving & mourning if it doesnt have to b. I can fully appreciate that ur journey might b alittle more challenging wen u r a mom & a wife & a daughter & a sister & a bf! there's a song I discovered that helps me wen I m buried in my own mud & swimming in my flood waters of tears as I pine away for the way it used to b wen my loved one was alive.
    In the hands of God- Newsboys
    from Northern BC

    ReplyDelete
  17. Just stopped by as I am remembering Hope.

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