Life is a path: death is a destination

Can you imagine what it actually feels like to not be able to live with yourself. I don’t mean that figuratively but literally. All my life I have been very independent, and when I was told the chances of conceiving my own baby were slim to none, I focused on the practical side of life. Buying a house, studying for a job that wasn’t just a job but a career. I am a very black and white person, the most dominant part being logical, the part of me that has been my core survival. The emotional me has always only had a very small role in my life. That was until William was born. Wow, the intensity of love was frightening, I didn’t know love like that existed and it was all mine. There was nothing that could change it, I didn’t know how I had lived without it for so long. I had finally been born, I was finally alive.

My life it seemed had always been a journey of survival, a survival that relied upon my logical, practical side, a side that had never let me down. When William was sick, I did what I was supposed to do, I took him to the doctors. When I wasn’t satisfied I took him to another doctor, when he didn’t improve I took him back, again and again. In the hours leading up to William’s death I knew something was wrong, and I took him to those that we trust, I walked away reassured I was doing the right thing. The day before William died the niggling feeling, my mother’s instinct was telling me, he’s just not right, so I called for help and advice. Twice that day. Following advice, I was apparently doing the right thing. But it wasn’t the right thing. This I could tell you until I’m blue in the face that William’s death was out of my control, I would trade my life for his, but I still blame myself, I let myself down and I let my boy down.

With hindsight, there’s that word again, a curse word and knowing what we know now that William’s death was avoidable only reinforces that blame is warranted. I know every fine detail of the weeks, months, and those last few hours of William’s life. It doesn’t matter how many people tell me over and over that it’s not my fault, I shouldn’t feel guilty, I wasn’t to know, I did everything I could, the reasoning, but regardless the guilt remains. The guilt is born from what any mother would feel as her normal sense of responsibility for her baby, and the inherent belief that we have ultimate control over what happens to us, what happens to our loved ones and our built-in desire to protect. The despair only magnifies the deep-rooted guilt and makes me feel like a complete failure as a human being, and most importantly as a mother. Existing through each day, resisting the urge to end my life is potentially the hardest fight. A fight I know I’ll lose.

These feelings of guilt creep into every aspect of my day, every thought, intensified by my love for William, my need to close my eyes, go back to those moments and take away his suffering. This is something I have no control over, I can’t go back, I can’t change it but guilt allows me to control the situation I find myself in during every waking moment. I know that the decisions I made at the time were always in William’s best interests. The guilt I know is unfounded, feeling guilty is not the same as being guilty, this is so hard for people to understand. Guilt is all-consuming, made up of despair, regret, incompetence, failure, sadness, and these all form the worst feeling of all, blame.

I feel vulnerable, I am constantly anxious, I am worried, about what I don’t know, I no longer have anything to worry about. I have very little control over any of my feelings, the realisation of the horror that is my life is racked with guilt. My whole body aches with love, now I share my love for William with the world as my only witness. Guilt is the most painful companion to death.

William my sweetheart, you saw me take my first breath as you took yours, I saw you take your last breath, and when I take my last, we will be together. Forever.

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6 thoughts on “Life is a path: death is a destination

  1. Hi.. Thank you for sharing . I am so very sorry for your loss of William. I can relate to everything you’ve said! My 5 year old daughter Reese passed just 3 months ago and the guilt consumes me everyday. I knew she was dying even when the doctors were telling me she’s going home my gut mommy instinct made me question them over and over until it was too late. You put your trust in their knowledge or now that I see it lack there of. It’s just not right our babies should be here. I miss my little girl terribly she was my life.

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    • My goodness yes, that is exactly it. William was my life also, I’m so sorry you have lost your little girl. It hurts so much knowing that our instincts were driving us to the doctors but we were let down, I feel so awful for you, I hope you find peace, I’m Struggling to find it even now 9 ‘months on xx

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  2. I struggle every day to find peace (3 years and almost 3 months later). I look everywhere, but I think maybe I’m still searching for my son and that’s why I can never find peace.

    Guilt is very difficult to deal with. You sought medical help repeatedly, but never got the proper diagnosis or help. How could you have done more? And yet, we all feel that if we had done things differently our children would still be here. One unfortunate thing I’ve learned is that none of us have as much control as we think we do. I used to believe that doing the right thing would always yield the right results. Now I know that is nothing more than an illusion.

    I meant to add your blog to my site a couple of months ago, but I guess I never saw your reply giving me permission. Thank you, I added it today.

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  3. I can relate to your blog. I lost my daughter 5 months ago, she was only 6 weeks and 6 days old. She had a metabolic disorder (MMA) not many Dr nor hospitals have heard about this yet alone dealt with it. My daughter went through quite a lot between 2 hospitals from medicine and misdiagnosis in the 1st hospital to the 2nd hospital trying their hardest to rectify the previous mistakes and guesses. My daughter got stronger and weaker as the weeks went by. The nurses and Dr would call us telling us its time to spend your last and it killed me hearing those words, it killed me to watch my daughter stop breathing and being resuscitated but you lay your trust in the medical facilities. I questioned my hubby asking how do you say goodbye to your child, how do you just let them go and asking why? On her last day i knew it was the last, that mother instinct played a big roll. I stood at my daughters bed side, i kissed her lips, i kissed her forehead, i held her tiny hands until her last breath was taken, until her heart finally was at rest with no pain. THE WORST DAY OF MY LIFE.
    I miss my daughter terribly and cry everyday. I wish i could just have her back, have her in my arms.

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    • Oh my goodness that is so so sad, I am so sorry you lost your precious little girl. You are right not many know about metabolic disorders and you somewhat feel that the time spent trying to diagnose the problem is time wasted, when you know there is someone out there who could help.

      The hardest and most awful moment in life is realising and knowing that they are gone. The shock and total disbelief is overwhelming. I couldn’t say goodbye to William because it just felt so wrong. Here anytime if you would like to message me. Much love to you and your husband xx

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