Thursday, December 17, 2009

Darkest moments

My story with Kyle was just beginning as we waited to hear what was wrong with our perfect boy, the mri and scan showed nothing so they performed a lumbar puncture to rule out meningitis, God I can still hear him screaming having that done, it took two doctors and two nurses to hold him down to do it. We spent eight long days in hospital with him being given antibiotics through a drip every six hours, his poor hands were destroyed from where he tryed to get the "Freddie" out, he hated it. We were told that they couldn't find anything wrong and to go home and it would probably never happen again, how wrong they were five weeks later it happened again, he was asleep in his cot and I heard the scream and ran he, he was blue around the mouth and I started shaking him to try and wake him, another ambulance ride to the hospital and straight into ICU. I was beside myself and was actually physically sick that this was happening again. Everytime Kyle went asleep he had a seizure and they lasted six to seven mins each, that night he had eleven seizures and he was eventually sedated to give his poor little body a rest. That was the longest night of my life and as we waited for the consultant to see us the next day a fear was building inside me. The words that the doctor had said to me when I lost my baby came back to bite me in the ass, "better to lose a child now than have a severely disabled child later on" I could hear them ringing in my ears, was this the situation I now found myself in?
The Consultant came in and said I have to tell you your child has epilepsy and its so severe that he will need medication to control it and also medication to stop a seizure if he has more of them! He told me Kyle was classed as a medical emergency and that if any seizure lasted more than five minutes he was to brought into the hospital. I barely listened after that, all I could think of was please just get out of this room and leave me alone before I break down, I think he could sense my despair and left. Kyle was in his buggy and was smiling up at me and my heart was breaking for him, I asked my dad to bring him for a walk that I needed to be by myself for a while so he did what I asked, as soon as he left the corridor I shut the door and fell to the floor and howled, I wailed so loudly the nurses ran in to see what was going on and found me curled up in a ball in the corner of the room. A big mug of very sweet tea was produced and I was gently put on a chair and left alone.
That day it felt like my perfect child died and I was given a changeling in his place, I could barely bring myself to look at him. I felt this was my fault, my fault for not wanting a boy in the first place so I was in some way being punished. My fault that I didn't produce a perfect child, I believe in Karma and I thought I had done something really awful to someone or something to have my child deserve such a fate. I descended into despair and self pity. All our lives had changed that day, little did we know that this was just the beginning of the Storm.

10 comments:

  1. Ah Andra, tears are rolling down my cheeks for you. what an awful thing to have to go through and your able to describle it so well. I know how tough epilepsy can be until you get it stable and I only found out at 22 so i can imagine how tough it was that its your baby. And its so draining on his body too, what he must have went through.
    for someone wo went through so much, your so positive and a fantastic mother
    xxx

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  2. Ah Andra pet! What a harrowing time for you all! We're all allowed howling on the floor moments - mine came at 2.30 in the morning in a hotel bathroom in Bangkok. Kyle and Laurena are so lucky to have such a wonderful mum xx

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  3. I can't imagine the fear and pain of seeing your child go through all that. You describe what you went through so well.Big hugs XXX

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  4. I have only seen strangers having a seizure, and that was bad enough but to see your own son must have been so frightening.Jim used to have petit mal's and that has always been in the back of my mind.Well done Andra

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  5. god andra, luca only had one and i could never see it again, god love you all going through it in that way so many times xxxxx

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  6. I'm sure writing about that dark time has brought a flood of emotions back to you! I wish I could give you a hug right now xx

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  7. Thankyou for all your kind comments they are much appreciated. Tracy it was a very dark time for us and it certainly has brought back some hidden memories long since buried in the deep recesses of my mind however strangely enough writing it down has been very comforting in a strange way, I feel this is my safe haven to have a outlet in which I can freely express myself. I wish I had done this ages ago now.

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  8. wow that was a powerful description of an awful event. you told it so well, tears in my eyes for you and Kyle x

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  9. Andra I sit shaking my head in disbelief, tears rolling down my face! How horrible for you to go through that and your poor baby boy.

    I can't even imagine how that must feel. You are an amazing person to be able to pick your self up, brush your self off and keep going.

    I hope you don't mind, I just found your blog and I want to start at the begining so I can follow whats going on :)

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  10. Carriemumof2withasd I look forward to your comments and of course I don't mind you reading it. Have lost my blogging mojo recently but hope to find it very soon.

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