Some days

Some days are So. Damn. Hard.

There I said it. My husband’s right – I can sit for hours at the kitchen table, laptop on or not, just staring at the screen or out the window. You’d think I was daydreaming.

If daydreams included images of chest compressions and blood and babies in caskets, then you’d be right.

If daydreams included physical pain in the pit of your stomach, an unending longing and devastating emptiness, then you’d be right.

I know I’m on auto-pilot, but that’s part of being ‘strong’ and taking it day to day, isn’t it? To be able to function, albeit minimally. I mean, the minions haven’t missed a meal, they’ve made it to school dressed in clean clothes, I took at least 1 shower this week, hell, that’s sounds like a typical week for a stay home mom.

It’s just the time in between. I do things in short bursts. Washing the dishes will take 20 minutes. Staring out the window may take 90. Sweeping the kitchen floor may take 5, while the anxiety builds for the 3 hours Zachary is away at Preschool. Standing in the pick-up line with a dozen other parents and younger siblings is the stuff panic attacks are made of.

I realized that it’s been 2 weeks. 14 days since the universe created a rift in my heart. I keep thinking that each day will get a little bit easier, but they don’t seem to. Some days just seem harder.

I ventured onto Twitter Saturday night and came across a conversation that just crushed me. Another blogger had posted about her daughter being 3 years cancer free. A privileged member of the Survivor Club. One of her readers congratulated her for ‘praying her daughter back to health’. Really? That’s all if took? A few words whispered on the wind and Voila! your child gets to live?

Said blogger actually deleted the comment and went on to tell this reader that it wasn’t all about prayer and what of the all the lost children? Didn’t their parents not pray enough for God to chose to save them? Reader responded by saying she should be ‘proud’ that God listened to her and healed her child.

Proud? Not that the doctors had anything to do with it, not that years of treatment had anything to do with it – but just the mere fact that she prayed well enough so God affected a shift in her favor.

Dear reader – should I blame you that David died? Because clearly you did not pray well enough for us, at least according to this commenter. The thousands of you that offered up prayers and told friends of friends and called prayer chains and had entire churches praying for us – clearly none of us have it In with the Man Upstairs.

I’m sorry, but just the thought that some how I was just not good enough to convince God to let David live, terminates any desire to want to believe in said Omnipotent Being. And it brings me to my knees, paralyzed with doubt.

Thoughts like that start to creep into your mind anyway. I’m a rational person, but grief does funny things to your thinking process. I believe we did everything, EVERYTHING  that could be done, but what if, what if I hadn’t gone to take a shower that Saturday morning? Should I have stayed to help turn him and change his diaper? If I had stayed, maybe I could have prevented the aspiration. If he hadn’t aspirated the blood, would he still be here?

So many doubts cloud your mind. It becomes difficult to embrace that some how you weren’t responsible for the outcome, that one of your decisions wasn’t the fatal decision. I know, I know, I KNOW that’s not the case, but those awful little whispers of doubt wiggle their way into your conscious and before you know it they firmly take root.

Your rational mind is overtaken by the irrational and pretty soon all I see is failure. Failure in my responsibility as a mother to protect her child. Failure in my ability as a mother. Period.

So while this comment wasn’t even directed at me, it didn’t have to be. Some hack doesn’t have to tell me that God punishes those that aren’t faithful enough. That maybe I didn’t do enough for David.

My irrational mind is doing a bang-up job at telling me that I failed.

And that, my friends, can be worse than any hack.

Categories: Life | Tags: , , , , , , , , | 23 Comments

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23 thoughts on “Some days

  1. I won’t pretend that I know what you’re going through, but I understand that doubt can plague your mind and it’s so easy to get caught up blaming yourself. And I agree with you about praying your child back to health. That is a slap in the face.
    My first visit, stopped by from Monday Mingle

  2. Amy – YOU DID NOT FAIL!!! You did ABSOLUTELY everything that you could for David. It was not the shower that fateful Saturday morning, it was not an hour of sleep that you might have allowed yourself one evening, it was none of that. You sat, cried, layed, stood by your son’s bedside for 5 months. You were the best mother than any mother could be.

    I have so many things to say about the comment that person made on the blog. But, I will leave it at this – I am hoping that she probably meant well and did not mean to hurt those who have lost children.

    There was a reason that David left this world for a better place. We may never know, we may never understand, it will hurt forever, knowing that there was a reason won’t take away the pain – but there HAD to be a reason. I believe that with all my heart. If I did not believe that there was a reason for all this – then I would crawl into a hole and never come out – thinking of the life that my little Mitchell leads every day with this horrible UCD.

    There is one thing that I know – David was not taken because of lack of prayer. I prayed so hard – God probably thought that I was shouting at him. All of us were!

    Please do not doubt yourself (although I know that is easier said than done – because I doubt myself on a daily basis taking care of a child with such constant and terrifying maintenance) – but you DID EVERYTHING THAT YOU COULD FOR DAVID – and more!!!!!!

    Believe in yourself ! You are amazing!

  3. I’m sorry.

    For the hole in your soul that will never be repaired.

    If only prayers by the “right” person were enough. I would find them for you.

    But I can’t. all I can do is give you my weak “I’m sorry”.

    And even if that reader chooses to be a blind jerk, I think everyone that mattered knows you love your son more than ENOUGH.

    NAMELY, David.

  4. The bad news: Doubts and misgivings are normal. Irrational thoughts are to be expected during times of great grief and sorrow.

    The good news: You are wise enough and “in touch” enough to know that said thoughts and doubts do not represent reality. They are not truths. They are lies.

    The even better news: You are smart enough to expose the lies in a public forum so that when they start to overtake you, your friends will remind your of the truth.

    Suggestion: Make a list of truths. Write it down. Carry it with you. Consult it often.

    One of my favorite quotes: “When your heart tells you something Truth refutes, tell your heart the truth: ‘That is a lie.'”


  5. Kristie

    My heart continues to break for you, and for your family. I know that the words of one person, a complete stranger at that, cannot make you stop blaming yourself for this loss. That being said, I do want to offer my support in saying that you truly cannot blame yourself! I am a lifelong Christian, I believe strongly in the power of prayer. However, I firmly believe that God does not reward you for praying hard enough, or praying the right way, or being good enough. God is a loving God, He is a forgiving God, He is a God of grace. It is impossible for us to grasp or understand why bad things happen to good people. There is no users guide to life that we can flip to the troubleshooting section and look up the answers. You wrote before about purpose, and while it is nice to be able to hope that your story has made a difference in someone elses life – it doesn’t change the loss that you have experienced.

    Please don’t give up on God – He is cradling your baby boys in his arms right now – and He wants nothing more than for you to see your boys again for eternity once your time on Earth is done. Please have faith that even though it’s impossible for you to see it or understand it right now, God does have a plan for you. There is a song called “If You Want Me To” by Christian singer Ginny Owens that I have listened to when going through a difficult time. I’d like to share the lyrics with you (at the end of this post). The lines that always stay in my mind are “But You never said it would be easy, You only said I’d never go alone”. Today my prayer for you is that you will know, without a doubt, that you are NOT alone.

    Sending you love and hugs,


    The pathway is broken
    And The signs are unclear
    And I don’t know the reason why You brought me here
    But just because You love me the way that You do
    I’m gonna walk through the valley
    If You want me to

    Cause I’m not who I was
    When I took my first step
    And I’m clinging to the promise You’re not through with me yet
    so if all of these trials bring me closer to you
    Then I will walk through the fire
    If You want me to

    It may not be the way I would have chosen
    When you lead me through a world that’s not my home
    But You never said it would be easy
    You only said I’d never go alone

    So When the whole world turns against me
    And I’m all by myself
    And I can’t hear You answer my cries for help
    I’ll remember the suffering Your love put You through
    And I will go through the valley If You want me to

  6. Having followed you blog I have absolutely no doubt that you, and everybody else involved did everything they could, you should never doubt that!

  7. Patty

    Amy, as a Christian, those kind of comments just infuriate me! The Bible teaches that God has each of our days numbered before we are ever formed in the womb. God had a purpose for David’s life and I firmly believe that that purpose is being accomplished. As in my great niece’s death, I can’t grieve for her because I believe that she is in heaven and for her there is nothing better than that. I grieve for those left behind – my brother and his wife, my nephew and his wife, and you and Jim. David is no longer suffering. The hard part is understanding why God allowed him to only have 8 months on this earth. I always want to know the reason why but sometimes we aren’t able to know that until years later or sometimes we never know. But God’s ways are so much better than our ways, so I know there is a reason that David’s life on earth was cut short. Anyone that has followed your blog, knows that you did EVERYTHING humanly possible for David. And yes, there was not a lack of prayer on David’s behalf. I look at it that David had fulfilled his mission on earth. God is using his little life to accomplish many things that never would have happened had it not been for those 8 months he spent here. I hope and will pray that you will be able to push any feelings of guilt out of your mind. God was not punishing you for taking two hours away from David that Saturday.

    I’d still love to hear more about your painting. Have you considered painting a picture to hang in the Ronald McDonald house as a tribute to David?

    Thanks for sharing all your feelings with us – not just the good ones. You are allowed to be mad, hurt, sad, etc. but guilty, NO! Don’t let stupid comments by other people get you down. Too many of us know the truth!

    Wish I lived close enough to share a cup of tea!

  8. Hey Amy,
    Don’t forget that stupid, insensitive rude people will be everywhere. Don’t let someone’s misjudged and unappropriate comments damage your perceptions on anything. Trust, I let stupid people steal my joy in Faith for YEARS and it took me nearly dying to wake up and realize He was there reaching out to give me this joy. I love you girlie and I’m sorry that you’re enduring this pain, you know I’d give you the shirt off my back if I could erase even a fraction of it. Please don’t blame yourself moma. You are a phenomenal woman and you did WAYYYYYYY more than some people do. You gave up EVERYTHING to be there 24/7. You’re still giving so much. I love you. Write me and ignore such ill people. They only prove that in fact the enemy’s working over time in this life.

    Hugs and kisses.

  9. This reminds me of something someone said to me a few weeks after I lost my Dad to cancer. They said, “People who use positive thinking can overcome cancer”. I remember being absolutely infuriated at the insinuation that my Dad was somehow to blame for the fact that he lost his battle.
    What you are feeling right now must be about a thousand times what I felt then.
    Your irrational mind is – well, irrational. The idea that you – the Mom who was at her son’s bedside for five months, who knew in detail every condition, every medication, who made suggestions to doctors and actively took part in the babe’s care – did not do enough, is absolutely ludicrous.
    You need to do your best to ignore those ignorant comments, and remind yourself of all that you did do. Remind yourself of what a phenomenal Mom, what a wonderful human being you truly are.
    Your irrational mind will eventually get the message and stop talking nonsense.
    Hugs to you.

  10. I am very faithful. But I don’t believe prayer is the magic pill, because sometimes God says yes and sometimes he says no.

    Take all the time you need to figure out who God is. And … I hope what I’m saying is not harmful to your heart.


  11. I’m so sorry that an inconsiderate, misinformed stranger can cause you such horrendous heartache. And I’m sorry that he/she can misrepresent the truth of God’s word and the power of prayer to cause you to doubt yourself, and to doubt God. There is no truth to her idea that God “rewards” those who pray hard enough or long enough or with the “magic” words.

    Like several of your commenters today, I am a Christian and I believe that God has a plan above and beyond what we can comprehend, but I do not believe that He causes pain and suffering. The truth is that David’s precious life ended too soon because of a disease. Only God knows why he allowed David to go through such pain and only God can use David’s short time here for good, but what we all can know is that God loves David even more than you do and it is never his plan for one of his children to suffer.

    You did everything possible for David and you have no reason to doubt yourself. I can not imagine a more devoted parent. Please don’t let callous words make you question that.

    You are still in our prayers – for strength, peace, and hope.

  12. Still praying for you and your family.

  13. ewww, ohhh, ummm deep thought. I am in this very spot daily due to my own closet mongers – which are opposite of yours. The what ifs in life are downright fair game play for what we choose to do with those. I choose not to continue the abuse cycle – what will you choose?
    I believe in the power of prayer, but God chooses who, where, when, and why. It is done in HIS time, not at our beck and call and that fact, that he even listens to any of us (us full of sin and disrespect for who HE is) makes the miracles HE places on some, just that miracles.

    You need time to grieve and being angry with God or like thereof is “NORMAL” you will always question yourself – it is NORMAL and ok. When I heard the news about David – I crumpled with sorrow and my own anger as to why – he didn’t answer the many hundreds and thousand of prayers – what more could I have done to help?? I feel I let you down big time and that heralds more pain than you know. On top of all of that, I didn’t attend the funeral. Did I want to be there, absolutely, I live too far away and my own kids have their own issues and I need to be here.
    There is NO one way to feel – just keep reaching out and there are thousands of us willing to support you, even if we have never met you.

    Blessings, Diane

  14. Jean

    I can tell from your blog alone that both David and you fought as hard as you possibly could and did everything you possibly could. Please do not doubt that for even a minute!

    God must have a plan for David. He must need him very much for his plan.

    If it was as simple as the right prayer or the right person praying, those words would be passed around to all who need them or that person would be very busy praying non-stop. It just isn’t so. I wish it was so simple.

    You fought as hard as you could. You did everything and the best that could be done.

  15. I am so sorry for everything that you are going through. I know that saying “I’m sorry” doesn’t help but I know that there are no words that will help during this time. I just hope that some day you can find some peace knowing that you did everything that you could and you fought every day.

  16. Amy, this digs deep into my soul. This is the type of stuff that would keep me up at night as well.
    You know – LOGICALLY – that you did everything you could. You know – LOGICALLY – that it wasn’t the shower, that it wasn’t ANY action YOU did or that ANYONE did that was “the one thing”. You know that logically.
    Emotionally, I would be throwing shit up against walls, I would be angry at everyone whose child survived something else, I would be… something LESS than you are right now.
    I’m so sorry for the pain you are feeling, for the range of emotions you are going through and for the (seeming) confusion you are dealing with. Life is so unfair and it’s hard to rejoice in other people’s happiness when you are dealing with something so awful that nobody should have to go through it.

    Honey, it’s ONLY been two weeks. These may have been the worst two weeks of your life and maybe the hardest thing you’ll ever have to deal with… but it’s ONLY been two weeks. Cut yourself some slack, ok?
    You do what YOU need to do.


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  18. That is a tough one to wrap your head around – prayer, and who gets to benefit and who doesn’t? I think what you are thinking so often when I hear of certain situations. Maybe an easy way to think right now, is not to question. Just think about getting through. Your writing is a way to get through, the fact that you can do this is a huge step. You are acknowledging the world around you that is another huge step. So what if there are pauses in the day where you lose yourself to a daydream. You are getting through the day making steps…… I think so highly of you….

  19. Hearing comments like that really drive me crazy…usually its people who are clueless that say something so stupid! I’m sorry you had to read that. My daughter spent 4 months in the NICU ~ not knowing if she was going to make it or not…was hell. I am so incredibly grateful to say six years later she is doing remarkable. I have also experienced the loss of a baby and there are no words to describe the pain…I kept my pain and guilt bottled up inside of me for years. Life can be so cruel! May you find moments of peace and quiet.

  20. sharon

    As I understand it David died because he contracted a virus his system couldn’t cope with. You and everyone else did everything they could to keep him alive but the virus was too much. It was NOT your fault in any way, shape or form.

    Two weeks is no time at all to even get used to the fact that David has gone – gone forever. Give yourself credit for functioning as well as you are, which is amazingly well in my book. So what if it takes longer to do things and time slips through your fingers as you gaze into the hole in your life. If it was within my power I would award you the prize for being Mother of the Year.


  21. My heart breaks for you.

  22. Amy –

    I do not know you. I do not know you, but my heart breaks for you. I have spent a few minutes clicking around your blog, trying to get a sense of what has come before . . . of who you are. All I have to say is . . . wow.

    I have no words that are adequate to the grief you feel.

    I will only say that people who have never been touched by tragedy sometimes feel that their good fortune is down to them. That they have somehow played a part in keeping the badness at bay. How much lovelier is life if one can believe that bad things only happen to those who have brought it upon themselves?

    The notion that more fervent prayer would have helped?

    That whatever God in whom you believe would turn his back on your pleas and meet the requests of someone else instead?

    That is beyond hurtful.

    I am so sorry that those words found their way into your heart.

    Life is life. Death is death. Both come for all of us.

    You are a good mom. David was a lucky little boy.

    He did not get as long as some others.

    But he left his mark.

    Is there more that can be asked of anyone than to leave a mark?

    I do not know you. But I send you love.


  23. Sometimes people don’t understand the perspective of those who have experienced something completely different in life. They don’t understand how their words can affect others.
    Maybe this comment wasn’t directed to you specifically, but it was made specifically to vindicate the faithful and prey on those who aren’t. I hear a lot of stuff about the healing power of faith and prauer, but I don;t hear a lot of people talking about those people who are hurt and stepped on in the name of faith and prayer, and there are a lot of them.
    It makes me really upset when people do things without thinking how they may be affecting others. Sometimes we all make mistakes, of course, but when someone takes the time to express how your words are affecting them… deleting what they have to say, in my mind, is a big no-no.

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