My child my carer, my guilt.

There are times when I feel as though life has played a cruel joke on the my son by pairing him with a mum like me. What other reason could there be for giving a child a mother once so vivacious and so full of life, only for that child to then watch as she slowly withers into a shell of her former self?

My longing for a child was dashed quite early on in life after I was told at 13, that due to a congenital deformity of the womb, I would be unable to carry. A few years and two miscarriages later seemed to confirm the fact. And so I settled with the idea that it simply wasn’t meant to be before locking it away and burying it deep within the recesses of my mind. And then life took on a surprising turn. After suffering with pain in the lower left side of my abdomen, I took myself off to A&E where they performed a series of tests. Imagine my surprise when I was told that I was three months pregnant and then my shock that the pain was an indication that it was an ectopic pregnancy. I was told that I would need to go back to the hospital in two days time, where they would remove part of the Fallopian tube along with the fetus. I told them no. The doctor was called in and argued that my baby was “already dead” and that if I left, I would have no one to blame but myself if anything were to happen to me, and so I left. The upshot was that In the end, after having had a scan and a written apology from the hospital, the baby was deemed fine and so my life as a mother begun.

When he was born, my womb-fruit resembled a rat spliced with the gene of a howler monkey, but he was all mine. At 8 months, he would have meltdowns of such epic proportions that I knew that something wasn’t quite right. When he reached 18 months, he begun to see a child psychologist. He was tested as being ‘above high intelligence’ and the meltdowns were thought to be a result of being to young to articulate himself, but I knew better. At the age of three, he could read fluently and even potty trained himself. I spent months placing him on the damned potty with no success, only to one morning hear the soft padded patter of tiny feet going to the toilet, closely followed by the sounds of the it being flushed. This was also along the time he was diagnosed with childhood arthritis.

Still, despite having tantrums where he would need to be restrained for fearing of harming himself and me, (I’d already suffered two concussions) the world was a place of adventures waiting to be discovered. Art galleries, theatres, cinema, museums, picnics in the living room and making bubbles out of household products, we did them all. My favourite was art time where he would sit still and I would paint him…no literally. I would take the brush and paint that little womb-fruit from head to toe whilst he sat there and laughed.
Over the years, I have sat through every school play and every concert. I have attend parent’s evenings and accompanied him on all school trips. I have laid alongside him when his joints were to painful for him to move, hid under covers as we travelled through caves, rolled along floors as we bumped our way down pretend hills and supported his career choice of becoming a bus.

When he was diagnosed with high functioning autism as I suspected, he didn’t care and when asked that should somebody come along, wave a magic wand and make it go away, would he do it? His answer was no.
And then I became ill and life changed yet again.
On the good days, life carried on as before and on the bad, he would make me tea in a small china teapot and carry that and two cups upstairs so we could drink and chat whilst in bed. He was seven.

By the age of nine, there were no longer any good days and he had become my full time carer. He had also at this point, been diagnosed with having Hemolytic Anemia, a condition in which the red blood cells are destroyed before their normal lifespan is over.
Now there were no more Art galleries, theatres or museums, and cinema trips are reserved way ahead of time to allow me sufficient strength to be able to go. I missed his last parent’s evening and all bar one of his award ceremonies and I won’t be able to go with him to look at colleges for September.

He’s fifteenth now and despite his own ailments, he cooks, shops, pulls me to standing when I can’t get up and accompanies me to my hospital and doctors appointments. He never complains, but I can see in his eyes that he is tired. We laugh a lot and have long rambling chats whilst sprawled out on my bed. He has given me life, but I feel as though I’ve stolen his.
At night, I wait until he is asleep and shed tears of guilt that he should be saddled with me as his mum. I am supposed to be the care-giver, not him. That shouldn’t be his role to take.

Last week we were both ill, which meant that I couldn’t get up to care for him. That left me feeling as though I didn’t deserve the title of ‘mother, ‘ and that I had failed him.
And so I lie awake and wonder what all this is doing to him mentally as well as physically. Will he look back on his life in years to come and remember nothing but darkness and illness? Will it impact his future? His relationships?
The guilt is overwhelming, it swallows me whole because no child should have to look after their parent and yet many have no choice. The Young Carers Network that he belongs to, do a great job in supporting children like him, but it’s no substitute to having support from a parent.  On some level, he must resent me and mourn the life that we once had, because I know I do.

In a couple of years, he wants to go way to University and live on campus. And although I am afraid of being alone and what that might entail for the future, I shall give him back his own by encouraging him to go and live his life to the fullest.

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11 thoughts on “My child my carer, my guilt.

  1. Lily, I can truly feel your heart in this post and it brought tears to my eyes! I had no idea you went through so much before having a baby. As someone who wanted children but wasn’t able to have them, I am so glad you had Spawn and no thanks to that doctor and hospital!! I am impressed with how he potty trained himself and read so fluently at three, a brilliant child!

    You two really had wonderful times together when he was young exploring adventures (art time made me smile!) despite the very difficult tantrums and his pain from childhood arthritis. You are such a devoted mother and it’s so clear how much you love and cherish your womb-fruit. I loved reading about all the things you did together. So he was just seven when you first became ill? Oh, my heart breaks for both of you! What a loving and truly special (and I mean that in the sincerest way) child Spawn is, taking care of you just as you took care of him.

    Life can be so cruel sometimes. What happened, that you became ill is so unfair especially for one who was so vivacious but it’s not your fault. I am sure the guilt and worry can be overwhelming because you are a good mother and you love your child so much. And you’re right that in a perfect world it shouldn’t be his role to take. But you have not failed him. Please don’t ever think you have! Your heart is always with him even when your body does not cooperate. That love, that means a lot. I know it may be difficult to imagine it now but that love is what he will remember. You and Spawn have a special bond. Sometimes life deals us a bad hand (and for different reasons I know about that myself). My heart goes out to you, and to Spawn, that chronic illness has robbed you both of so much. Sending much love and hugs to both of you! ❤ ❤

    Liked by 3 people

    • Madilyn, I am overcome with emotions at reading your truly kind words. (seriously crying here) It really means a lot to me because I’m not sure that the guilt or the feeling of being a bad mum will ever go away.
      We do have a special bond and he is truly special. If not for him, I doubt very much that I would still be on this mortal coil. I tell him everyday that I love and appreciate him and I do hope that he remembers that in years to come.
      Yep, he was just 7 when this all begun, although for the first few years, there were large periods of remission, so life carried on as usual. It’s the last 3 years that have been the worst and yet everyone who meets him is enamoured by him, despite his own ailments. He is intelligent, witty, charming, a smart arse and a little bit eccentric. As for the doctor at the hospital, he was forced to write an apology after I threaten to sue them. He hadn’t even examined me before he’d made his diagnosis and thank the heavens I didn’t listen to him.
      Again, thank you SO much for your words. My heart feels a little lighter and a lot of comfort after reading them. 🙂 ❤

      Liked by 3 people

  2. I admit that I have put off replying, I read your post yesterday and I bawled! I didn’t know how to reply to you without using the usual platitudes. If they creep in here, just know that they are meant sincerely.
    First off – try to set aside your guilt (I KNOW this is hard). You have been the best mother you could be to Spawn. You love him, he loves you. He will always have that love, and the realisation that you are a person, who even through their own troubles, did all that you could for him. I think your measure of parenting has already been set – you did not give up on him before he was born, and I know that you would not give up on him now – why should his love for you be any less? If you could miraculously be cured of your ills tomorrow, but it was at the expense of your child, you would not agree to it – that wipes out any piddling guilt about the quality you believe your mothering to be.
    It is ok to feel guilty – we all do – but don’t allow it to cloud the happiness that you can have today, even if it is not the happiness you think you should have.
    I used to work myself up to a dreadful state wondering how I was going to tell my kids their Dad had died, I made myself miserable, and probably them too with all that stress and pain. In the end, when it happened, it was just what it was. It was hard, but there was no other option, so we made the best of it, and still do.
    Things that can’t be changed, can’t be changed. My little thought that runs through my head at these times is “don’t add worse to the top of it”.
    I can’t imagine the pain that you, and Spawn, live with everyday – but I know that we shouldn’t judge ourselves by what we can’t do, and that sometimes what we can do may only be little, but little things can bring immense happiness if we let them. If we let them.
    I haven’t said it very well, typing tends to make me loose track of what I’m actually trying to convey.
    I admire you, you are real, you are obviously brave and loving and thoughtful, and your life has gone down a path you never imagined, but you can still find humour and laugh (even if it is slightly maniacal – perhaps, in the end, that is the best kind, laughter on the edge), and your compassion and love shines through for your child. Spawns’ life is his to choose, but I’m betting he does not regret spending it with you, as you were then, as you are now.
    In the end it comes down to love – and you have that in immeasurable quantities. Shove the guilt and regret an the “what ifs” under the bed with the dust bunnies and let the moulder in peace – NEVER look under there, there is nothing interesting to see – it all lies ahead on this weird road called life.
    (God, that sounds trite and preachy – it’s not meant too, sorry) – obviously I am very bad at trying to make sense of the world!!!!).
    All the best to you and Spawn.

    Liked by 2 people

    • You guys are just determined to make me cry like a babbling brook! 😉 I admit that I did read your comment this morning, but again, I was so overawed by what I read, that I couldn’t see the screen through the tears. No platitudes from you. I know that when you say something, you mean it with the utmost sincerity. I have been drowning in my guilt and the depression that has followed in it’s wake has been unbearable. Today is the first time in a few weeks where I haven’t felt that way. Nothing is different. The days have been as they were before, except for the two beautiful comments from you and Madilyn that truly touched my soul and made me feel like I could smile again…and I did…after crying.
      I get what you’re saying, It’s not a case of read and then dismiss, because those words have given me the power to at least try and shove the guilt under the bed with the dust bunnies…so much dust bunnies…
      Thank you for helping me to make sense of the world, or my world at least and for making me smile. I owe you both for that. 🙂 xx

      Liked by 1 person

  3. First of all my dear, sweet Lily, thank you for the cleansing baby bawling session I have just gone thru. Second, please, please, please have no worries about that amazing child of yours having feelings of resentment towards you. He does not. He will not. Your love for him oozes out from the depth of your soul onto the page. You are not a bad mother. One glance at the way you write about your beloved Spawn certainly shows that. And all he does for you? That’s his love oozing from the depth of his soul. No regrets. No resentments. Just love. Your bodies may not be perfect but indeed your spirits are. You are the dynamic duo and always will be. You have given him roots, soon he will have his wings but you will forever be home to him. ❤

    Liked by 2 people

    • Karen, I am currently doing that hand flapping thing that we women do when we cry. You know the one, where we look as though if we can just flap our tears away. (Dammit! Will everyone stop making me cry!) Thank you SO much! That really did touch my heart, especially that last paragraph which just gave me goosebumps.
      These comments have helped me ENORMOUSLY and my guilt, although still there, is slightly less overwhelming. You gals will never know just how much your wonderful words have helped me and in a sense, healed me as well.
      Thank you from the bottom of my heart. ❤ ❤

      Liked by 1 person

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