Monday, 25 March 2013

A Night of Firsts

This day marks an end for me.  Today I experienced the first strong moment of wishing Hope had never been born.  I then looked at pictures of her and my heart instantly changed as the love I have for her flooded in.  The feeling was there, it was brief, but it came.  Today was also the first time in this journey that I have been truly angry with God.  Throughout my pregnancy and Hope's first 11 months of life, I have trusted him as completely as I was able to.  Tonight I felt extreme anger and even rage.  I can't help but feel defeated.  Today is also the first time I have truly wondered, why me?  I know the answers to these questions.  I know the promises of God and I know all the fluffy things that people will long to type after reading this.  I also know that in this moment, these are my feelings.  Beautiful or ugly, they are real.

Hope has begun vomiting again.  I have asked the resident to put her on pure breast milk for the rest of the night until the doctors return in the morning.  I have no idea what happens next.  Likely TPN and months of GI doctors that have no idea what to do and secretly believe it's Cardiology's problem.  Months of Cardiologists that believe her heart is the only decent part of her body.  Nutritionists that come up with some new great idea to feed her that works for a while, but then fails.

How many months of false hope, crushed dreams and a split family will we endure?  I don't need you to feel sorry for me, I feel sorry enough for myself tonight.  I know this post is ugly and I will be ashamed of the emotions I feel in this moment.  At the same time, I want to remember this dark and ugly place I find myself in right now and I hope it reminds me of why I never want to be here again.

Tomorrow I don't want to go to the hospital.  I want to see Hope, but I don't want to go to the hospital.  Are we fighting for Hope's life so she can live an institutionalized life in the hospital forever?  This is me, at my bottom and completely over this all.  I can't pray.  When I think about starting I can't bring myself to do it.  If I do start talking, only anger comes out.  I feel like satan has truly won with me tonight.  Is this what he's wanted all along?  To convince me that hope is not worth holding on to and that little Hope is not going to ever be home?

What is a mother supposed to do?  Without some kind of hope, it's not possible to get out of bed in the midst of this Hell.  Yet, every ounce of hope I've held onto has brought so much pain, heart break and tears.  If you give up as a mother, who fights for your child, what reason do they have to fight?  If I crawl into a ball and stop trying at life in general, who loves on Sadie and Shawn in my place?  I feel like my only option is strength, my only hope is Christ and my only joy will be in eternity.

Why?  I can't answer why, but I sure hope this Hell is not going to carry on much longer.  I want my daughters under one roof.  Not in 2014, not by Christmas, or the  My patience is completely gone and I'm done.  NOW would be a good time to stop the constant setbacks, stolen dreams and the unexplained impossible task of trying to feed Hope.

Even in anger, right now I know I need the Lord more than ever.


  1. Amy, please know that we are crying and praying for you, on your behalf. And your blog is appreciated so much because you share your true feelings, and don't always cover them up with the "fluff". May Monday be brighter than Sunday.

  2. Amy, I don't know you at all and in fact, this is the first post of yours I've ever read. Yet regardless of your feelings and emotions and your anger towards the Lord, I can clearly see your reliance on Him. I have no words for your situation - I will never be able to understand the place you are with your daughter right now or the toll that it's taking on your family.

    I just wanted to encourage you to read the Psalms when you feel like you can. David was very open with the Lord and often spoke in anger - but in the end, He always gave glory to the Lord, which is exactly what you did in the end of the post. You acknowledged your need for Him. Maybe this post is your own personal Psalm.

  3. Thank you for your honest feelings. You have nothing to be ashamed of at all, your one human being at her limit. When you feel the way you do, God's people will lift you up in prayer...God has big shoulders and how you feel for real, He can handle and love you through even when it doesn't feel that way or look that way.

    I am so sorry and am praying for you today...

  4. tammy lynn porter25 March 2013 at 08:43

    It is okay to be angry..he can take it. These feelings do not have anything to do at all with satan. They have to do with a very strong but tired mom. You have every right. There is never a time God is not with you but it is specially in times like this that he is. I can't begin to know the pain of what you are going through but you are not alone. You and your family and your baby are surrounded in God's love..there is no other way. You have done nothing wrong and God does not make mistakes. I don't presume to know the mind of God but i do know there is a reason for everything. God does not make mistakes. Why you? because you can handle it. Why you? because you have an amazing capacity for love. But maybe for now you can give it to your your family..but give the worrying to God. and remember that no matter how angry you feel towards God he can take it.

  5. When my newborn son was struggling to recover from heart surgery and had caught the flu and was going into liver failure, my wife and I spent a very "dark" evening in our room, weeping and praying and basically crying out that we would reject God's direction if it was in our power to do so at that moment.

    It's OK to wrestle with God. He knows your heart, so why "lie" in your prayers when He already knows that you're struggling and angry? At these darkest of times, when all you feel is anger toward God, ultimately be thankful that even in your anger, you can acknowledge that His loving plan still exists, His grace is still there, even when it's very hard to see.

    - Patrick

  6. Amy, last year I too became extremely angry at God and blamed Him for not answering my prayers about an important family situation. Because of so many devastating things that happened the previous year, mostly the loss of my mom, I felt I couldn't deal with any more. I scared my family and myself but thankfully it didn't last long and God carried me through and I soon remembered that God has a purpose for me and I have to believe that in the end God's plan is the best plan for everyone. I "forgave" Him and no longer feel that anger. As I await another difficult decision in my life I get scared and it is hard to pray some days but untimately I have placed everything in His hands and trust Him with my life situations. I'm scared I will get angry again but He will forgive me and we will get through it together. You have all the reasons in the world to be angry and honestly I am amazed you haven't hit this point sooner. You will come through it. You have an army of people praying for you. We are all praying for Hope and trusting that God will heal her and that you will be together as a family once again. Without hope, what do we have? God is with you Amy!

    With Love and Prayers

  7. Amy, we love you and lift you up in prayer. God has really big shoulders and He is okay with your anger and your true raw feelings. He carries you in these times when you cannot carry yourself. Love and hugs to you. Extra special prayers for you today.
    Love Kimberley, Lloyd and the kids.

  8. God is not 'surprised' by your anger. He can handle it and anything else you throw at Him. We will continue to pray...-Kathy Alm

  9. I am so sorry. This is horrible and unfair and wrong. My advice to you (this may sound cruel) is to stop looking at tomorrow. Live in this moment only. Take things one at a time, as they come. Actually, you have been doing this beautifully already, for the last year+, you just don't realize it. But no more looking at tomorrow, or next week. Live this moment now. When you're with your girls, take in everything about them, how they look, the feel of their skin and soft hair, and smell (especially right after a bath.:) Pay attention to their every sound. Don't look forward, don't look back. Live now. Jesus lives here in the now with us. He is not in tomorrow (yet), He certainly is not in yesterday. When you feel like you're going to break, close your eyes and imagine Jesus holding you. Let Him be your strength. You are incredible to me. The average human being would have cracked so long ago. (Me included.) My prayer is that you feel the love and prayers of all of us surrounding you. Let us hold you up, let us take some of this pain from you. No human can do his alone. I will continue to pray for complete healing for your beautiful baby girl, and for you. "God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans." Romans 8:26 MSG Praying for peace and healing for your whole family, Amy.

  10. Amy - I have been reading your blog for many months and have been completely amazed at your strength through all of the challenges your family has faced. My daughter was born the same day as Hope, just a few hours earlier, right here in Calgary, and so I have really connected with your story. I cannot begin to imagine what you must be going through and I cry right along with your stories as I think about how unfair it seems for some babies to struggle with severe challenges, while other babies are healthy. Your story reminds me to be thankful every day for my little miracle. I just want you to know that you are in my thoughts daily and I pray so hard that Hope will be healthy and possibly at home to celebrate her first birthday.

  11. There are no words. He knows your pain.

    Grasping with you... my first 2 children threw up after most feedings (entirely breastfed). With my 3rd I have discovered that any dairy I consume comes straight back out of the little guy.

    Weeping and wrestling at the Lords feet along with you.

    Mom from Ontario

  12. Amy, I spent a number of hours backtracking through your blog last night and praying for your family. At exactly the time that you began/posted your latest entry, I was headed up to bed with all of you in my mind. Just know that you are not alone in this journey. I think if everyone who is following your blog and praying for your family were to write at once, you would be reading for a very long time! We love your family even though we have never met you. Hugs to you all. Psalms 46:10

  13. Amy,

    There is one thing as the survivor of almost every kind of abuse you can imagine, I have been angry with God lots. Through therapy I relive the abuse and deal with it and I get angry at God and say why me. I have learned that God is big enough to handle my anger. May I suggest you write him a really angry letter or find a field and yell at him...write or yell until there is no more left to say...that is what my Therapist says. It works. God knows how you feel. It is even ok to wonder why Hope was born. God knows why. God knows you felt that. He is with you ALL the time and loving you and holding you, Hope and your whole family. Let him hold you. Often I ask God to lay behind me and hug me if I am having a bad night. I have recently had a bad thing happen to me. Something I never expected. I honestly skipped my volunteer job today because I can't handle life. God is still with me and he is with you. Knuffels to you.

    Naomi in Ontario.

  14. Thank you for your honesty Amy. You do not need to feel ashamed for the place you are in. I believe God wants our honesty, no matter how ugly it seems. So many people are crying out to God on your behalf so if you have nothing left, that's ok.

  15. I am so sorry and heart broken along with you. I have been reading your posts, crying along with you, celebrating Hope's improvements, as well as celebrating at the possiblity of Hope's return home!
    I can never truly know what you are going through, I can only imagine, but from following your psosts I feel the same emotional roller coaster ride you describe.

    I have been this angry and frustrated for you, on more than a few occassions. To watch your child suffer as you have had to watch Hope, and knowing that all you can do is pray, and fight for Hope to get the best care and answers she isn't fair.

    I think you are over due to have had this night of firsts.
    you are doing amazing, and Hope, with everything she has been through, has proven to be a little fighter, a little miracle.
    I truly believe and know with all my heart that one day Hope will be at home, living a happy healthy life with her big sister and parents.

    Long road, or short road, it is the only road that will get her there, and one day, this journey will be a distant memory.

  16. Amy,I am so,so sorry for your pain.
    Jesus...we cry out to you on behalf of Amy's brokeness...heal baby Hope PLEASE and bring the unspeakable joy to Amy's heart that she has been longing and waiting and trusting you for... to bring her precious baby home.
    PLEASE... do what all of us that have been reading this blog are longing to see you do and acknowledge that you alone can do... a blessed miracle that brings you all the glory! Amen

  17. It's times like this you only see one set of footprints in the sand.....

  18. I am also struggling - read this blog today and thought perhaps it would be encouraging (and not fluffy)

  19. I am so sorry Amy. I can only imagine how hard the last year as been for you and your family and I hope I will never have to go through anything so difficult. It's hard when no one can tell you it will be ok.

  20. Amy, there is nothing I can say or do to make you feel better, but I can tell you this. It is OK to get angry.
    I will tell you that I spent hours yelling at God asking for a reason why he took our first child. We never even had the chance to hold him in our arms. I spent many hours in tearful prayer both silent and verbal asking why, blaming and even just screaming at Him, but when the tears of anger and pain finally past I felt a sense of overwhelming peace. This is how I KNOW anger is ok, God is patient with our doubts. His understanding goes beyond any measure.
    Take the time you need to voice your anger in whatever way you need to silent or otherwise, He knows our hearts and our minds

    We will continue to pray for you and your family and another miracle for Hope
    With Love

  21. We love you Amy.

  22. Hang in there Amy. I can't promise that everything will be all right, but Jesus is our steadfast rock. Don't hide or run away from your grief and anger. Take it to God. He's able to handle it, He knows. Praying for you during this dark night of the soul.

  23. Just sending you strength, Amy. And hugs...there are many, many people that are walking with you. God's have every right to express frustration and fear, hopelessness and grief. Please feel our positive thoughts and prayers. We all want to lift you up!

  24. Hope is still fighting so we all have to keep fighting and praying you will all be at home as a family some day.

  25. Having been in the valley watching my 6 month old suffer and consequently die, I know that the only message I want to send to you is that I am praying for you here in Ontario. May you feel God's nearness even in the dark valley. Go with God, one step at a time...he knows about your anger and despair. He's been there. SHALOM!

  26. Thinking every day about you and your family Amy. We met you while at the Stollery in Edmonton with Drayton. It is a terrible path to have to trudge through and it is so hard to keep your spirits up but always remember God is right there with us holding our hand and carrying us when we no longer have the strength to walk on our own. I continue to pray for you, Shaun, Hope and Sadie that you continue to find strenght, peace and comfort as we pray Hope gets better soon.

  27. I am a pharmacist at the Children's Hospital. Since I started reading your blog 2 months ago Hope has become a priority patient for me. Although I have never seen your little girl I have tried to give her the best care I can from a distance. When I made a suggestion to a coworker today about Hope she responded by how impressed she was that I was being so thorough. I hope that I can keep this level of work for every patient in the Children's Hospital. I want Hope to improve and go home and be with her family under one roof. I will continue to pray that this can happen.

  28. Kudos to you for allowing yourself to feel and think these things. You're human, and there is only so much any person can bear. Honesty - with others and yourself - is so important.

    That said, I understand faith and religion is an important part of your life, but you are in charge and responsible for your life, as well as Hope's. Relying on God to either provide or take away anything is only setting yourself up for disappointment.

    Taking responsibility for your life and Hope's life, rather than relying on a deity, will serve you well in the future.

    I know 'faith' is comforting in allowing yourself to not have to think about/take responsibility for what might or might not happen, but it also guarantees disappointment.

    Love God, but don't rely on God.

  29. you don't know me, but we have a mutual friend.... just want to say I am going to pray tonight for you.