Wednesday, 19 June 2013

How Are You?

Everyone I see asks how I'm doing.  It's not a bad question to ask, I simply don't have the energy to answer it completely.  So, I'll answer it here.  We are doing okay, not great but also not horribly.  It can change by the hour or even by the minute.  I'm clearly holding more pain than I'm aware of as my stomach is unsettled daily and I feel like everything I eat makes me feel worse.  I have a really difficult time sleeping and have finally gone to the doctor for some assistance.  I avoid going to bed until it's extremely late, then struggle to fall asleep.  I'm exhausted in the morning, but wired the next evening as my body fights sleep once again.  Last night I finally fell asleep easily, thanks to some help.  Unfortunately I don't want this to be a long term need and I'll only have help for 2 weeks.

Sadie still talks to me about her sister everyday.  Yesterday in the car she asked me if Jesus had wipes.  She said that he would need them to take care of Hope.  I told her that Jesus had everything he needed to care for Hope in Heaven.  Sadie looked up and said, "but he doesn't have us."  Those moments are difficult.  I agree with her, I simply can't jump into a conversation like that without breaking down.  I know it's okay to cry in front of her, but I don't feel its good for her to see me sobbing and irrational.

Shawn and I struggle in many ways because of the relief we feel.  We have been contacted by many families that have lost children.  There are some ways that we can connect with their story, but many that we cannot.  If we lost Sadie, we would be able to connect with their pain.  Losing a child that you deeply love, but that is extremely sick and has been in hospital for 9 months straight at the time she died, is simply too different.  Hope suffered.  She did not have any guarantees at a future and we had to choose to raise Hope and missed out on a lot of raising Sadie.  I would take Hope back in a second, if she was home and stable.  I wouldn't take Hope back the way she was though.  I can't imagine allowing her to come back to be poked multiple times a day.   To be attached to wires that prevented her from seeing the sunshine and developing properly.  I loved to snuggle Hope and selfishly I want that back, but nothing else in her life was good.  She is so much happier now and although it hurts, we feel so much relief for her.

I keep myself very busy.  I don't find it helpful to have an open day with no schedule.  Sadie is thrilled to be playing with all of her friends again and I am happy to be connecting with their moms.  I'm trying to do some normal things around the house, like cleaning a toilet.  I have been able to get to some things, but find that I burn out more quickly.  Some days I sit in Hope's room and go through all of her blankets and sleepers and touch them and remember the days she wore them.  I would love to dress her again and snap on her sleeper.  I long to change her diaper again, one that never got larger than a size 1 even after 13 months of life.  When I stand at the park with Sadie, I feel like my arms feel odd and should be holding Hope.  If I'm there with someone else I'm distracted and those thoughts are more fleeting.

Even a trip to Superstore can be difficult.  Yesterday I went to the Pharmacy to fill a prescription and instantly thought of all the times I was there to pick up Hope's medications.  Walking past the baby clothes I could see things I would have bought for Hope, heart covered sleepers and slippers.  As I packed my bags I found a note with the transplant coordinator's phone number at the hospital.  When I arrived home I found Hope's autopsy report in our mail.

Reading the autopsy was difficult.  We will be meeting with her cardiologist in the near future to discuss it.  It's like reading a foreign language and we need to fully understand it.  It was the written account of her last night that deeply grieved me.  Hope arrived in Edmonton at 7 pm and survived two cardiac arrests, one at 7:22 and another at 8:00.  I arrived at 8:30 and her time of death is listed at 8:41, the moment they stopped treating her and put her into my arms.  Although her heart was still beating from the medications and the breathing tube was still in, they already believed she was gone.  I still hate that I followed the law and did not speed the entire way.  I could have been there at 8 instead of 8:30.

Overall the report shows that Hope's heart was so much worse than they realized.  She should have been listed for a transplant months earlier and she could have benefitted from a cardiac surgery, although risky.  It's difficult to read that we did have options.  Although they were options that Hope's body did not show well and it was difficult for the doctors to see what she needed.  It was often that way with Hope, her body never properly reflected her needs and we were left guessing.

I am a broken woman that is only whole in Christ.  My family is missing a member and although we find that living each day is possible and we are okay, we remain broken.  We will only truly be whole again in Heaven with Jesus and sweet Hope.

29 comments:

  1. Amy. I lost someone at a very young age and although the pain is very raw at this moment I want you to know that days turn in to weeks and weeks to months and one day you will be able to breathe again without such a raw pain in your stomach. Although you never get over it, it does become easier. Take comfort in knowing that one day she will be in your arms again.

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  2. I think of you and your family daily! I will keep you in my prayers. I can't imagine how your heart aches to hold your sweet little Hope again.

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  3. Amy, I don't have any words, but I still pray daily for you & your family. Sincere love. ~Wendy - Norway.

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  4. Praying His Peace and Comfort.

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  5. You're right Amy, longing to have Hope here stable & healthy absolutely. But she's in a far better place away from pain. I imagine your frustration with the report and the what ifs would drive me crazy, but you were an inspirational advocate for Hope and I totally believe you did everything possible and then more on her behalf:)I'm sorry your family has had to travel this road, but I'm grateful for Hopes story

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  6. As I was praying for you I saw a blanket cover you and so I pray that Jesus would be your blanket...that protects you, hides you, comforts you and warms you and even wipes your tears. xo

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  7. Dianne Ducheno Johnson19 June 2013 at 13:50

    Praying for you all until you are reunited with Hope.

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  8. Thanks Amy for continuing to let us all in our your journey. We continue to pray for you all.

    Love,
    The Cordy's

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  9. You articulated this so very well. It's hard to realize there were options. If only we knew. If only the little bodies reflected what was going on inside better. If only they didn't compensate so well. Maybe this comment is more for me than for you right now. We also got our daughter's autopsy report a few days ago. Although not in the mail and almost 2 years after her death. It finally worked for us to get it and we had the fortitude to read it. I never felt rushed to get it. It wasn't a time-sensitive document. Nothing would change on it, no matter how long it waited for us to read it. Thank you for sharing how you are? It has remained a relatively sensitive question for me, along with 'how many children do you have?'
    Much love,
    Em

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  10. Amy:

    Your courage humbles me. And the fact that you continue to share your journey through all your pain is a gift ... to us. Thank you for continuing to share you heart, your struggles, your honesty. It's a testimony to the strength God bestows on you every day and a testament to the lessons you learned through your daughter Hope's life. I continue to read and I continue to pray for you and your family. With hugs,

    Mimi

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  11. Continuing to pray for you on your journey

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  12. You are loved and prayed for, Amy. You, Shawn and Sadie.

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  13. I cannot imagine the depth of your grief mingled with the knowledge that HOPE is in a better place than earth. Once again, I weep for your loss and for the pain of struggling through each day, each question, each memory. I am pretty sure everyone who has lost a loved one wishes for even one more minute, one more smile, one more hug. You words are a reminder that we need to cherish the minutes, smiles and hugs we have right now. Thoughts and prayers continue from Ontario.

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  14. lt is truly difficult to move, to talk, to eat, to sleep, to continue with daily functions when you have lost a loved one. There are times it feels like you are carrying a great weight around on your back that causes you to move at a snails pace and gives you tremendous fatigue. l found it so odd that my brain always new exactly how long, how many hours, days, weeks, months, years he had been gone from my life. Even now, after over 28years, l still wish for one more day, one more hour, just one more anything to be with him. My heart will never be the same, but the pain does get better, it eases as time goes by and you begin again. l feel your pain, l feel your tears run down my face, the longing to hold her in your arms. You are not alone, your sweet Hope is with you. Soon you will feel her and know when she is with you. l am so very sorry that you and your family have had to go through such a painful journey. l am so very sorry that you have lost your Hope. l will pray that with God's love, in time you will have peace in your heart. With love and understanding from BC

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  15. Amy, Shawn and Sadie: I am continuing to pray for your family. On sleep note - you could try 300 mg of magnesium 1/2 hour before going to bed. See if this helps (heard it on Dr. Oz and it is something I am going to try). debbie/kelowna

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  16. I have been encouraged tremendously whenever I see the word "HOPE" in scripture. From amazing Psalms to the power of 1 Peter.... Pausing on the word Hope has really added depth to my reflections.

    Reminders of your Hope in daily life will be difficult - but praying that you find encouragement -- remembering the hope we have in Him :) Continuing to pray for you and your family.

    Psalm 31:24

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  17. I think all of this is giving Sadie a unique understanding of God that many of us don't have. I think she IS developing a relationship with Jesus that is extraordinary and indescribable for someone her age. Though her questions trigger pain, your answers to her are serving an incredible purpose in shaping Sadie's spiritual future. I can't help but think she has an amazing future ahead of her, and I pray that her little mind can comprehend and process all that she is experiencing as a result of having Hope as her sister and you as her wonderful parents.

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  18. Thinking of you and sending you lots of extra prayers...

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  19. thinking of you guys, hoping your new home was kept safe!

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  20. I can't imagine wat u r going thru Amy? it's just beyond human words or human comprehension! wanting to sleep & stay asleep is a nice welcomed relief! cuz u can dream of ur times wen Hope was on earth & very much part of ur daily routine. & I can dream of my late mom web she cheered me on! now I am at stage where I finally have to face a nu life without my mom in this cold dark world! It's really not that bad it just feels that bad! an ache that there is no pill for! Yes it's true sometimes God's ways just doesn't make sense at all to us humans. y is that pedophile still roaming the earth or that wife beater still alive wen young children are dying every day in children's hospitals all over the world! these grieving parents have no frens or family to console them as those do in a Western civilization. Nor frens who sends grieving young parents to Mauii or get world wide coverage with the anxious mother talking with Moira Brown. but having said that Amy, I totally hear wat u r saying! just try not to keep ur daily e-diet of other grieving young parents only!
    The enemy would live to see you defeated in every way possible re: ur loss of ur young 13 mos old toddler Hope! Don't give the enemy any more air time than is necessary! But Amy, u & Shawn & Sadie r so blessed with many blessings to encourage u not to discourage u! Ur Hope is a spry young lady spending much time praying for her parents & big sister Sadie. Heaven just became a much richer place thx to Hope & her intoxicating love for Jesus & her intoxicating love for her family down on earth. My late mom is also up in Heaven no longer 96 but a young 26 yr old with a young heavenly body & awesome eye sight & hearing! " All the better to pray for you my dear children she says!" yes life is very tuff, we have to re-learn how to get up & stay up & then once again become a functioning member of society & our church family & home bible study groups! whether we want to or not, isolation is not the answer nor is sleep!
    well kid sister in Christ, just kno ur Hope is cheering u all on from Heaven. if u dare to listen carefully u will hear ur young lady Miss Hope making like a cheer leader! Give a "b" give me a " o" give me a "k" give me a " m" give me a "o" give me a "m" & wat do u have? U have " b ok mom!"
    Love from ur Hope, who is better than just ok! I m doing awesomely! I hope u all r doing awesome too! That's my daily if not hourly prayers for each & all!
    From Northern BC oh I forget to proof read so a few words might b left out!

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  21. Amy, You don't know me I know Marg and have been following your story and may have commented once to your post. Thank goodness you have time to spend with Sadie now, she is blessed to have a wonderful Mother like you. Hope is being well taking care of now. I have never lost a child, and so I can't identify with your pain. Hope will be in hundreds if not thousands of hearts because of your expression of your journey. Amy give yourself a lot of credit, you are much stronger than you believe. Sharing your story with so many takes courage and your undying love for your family is shown so profoundly. The Divine will show you the way, "ask and it shall be given to you". I bid you and your family a deep expression of peace. Hope will always be in MY heart also.

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