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.