Additional Needs

Special Needs Parents: I Need to Live Forever

Posted by Nichola Norton on 25th January 2017 Additional Needs, Disabilities

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Joy

Sadness

Pride

Loss

Love

Exhaustion

Strength

Empathy

Admiration

I feel it all and more!

I also feel fear or is it some kind of need or determination for something I know is impossible?

Completely impossible but here I am wanting and needing it because what else can I do!

My gorgeous, dear son will need care for the rest of his life, he doesn't have the option to choose his own house and make it a home, he's not going to be able to experience fatherhood and the love a parent feels for a child. My son isn't going to be able to devote his life caring for his family, instead he will be the one needing the care.

I fear the future when my son will need staff to care for his needs, when he lives in a home filled with people that are paid to care for him instead of family that want to care for him.

Will staff be coming and going?

Will they understand him?

Will they know the way he likes his food cut or know the trousers that are his favourite?

Will they be able to read the signs his hands make?

Will they let him touch their faces in that tender way that says "I love you "?

What if someone hurts him and I'm not there to protect him?  That thought breaks me then stamps on my crushed heart.

Will they see him the way I do and melt at his smile, that smile is the cure to everything. The way his whole face lights, a drip of warm feeling,  a dash of heavenly joy and a squeeze of happiness.

So you see I have this need, pure determination to live forever.

I have to always be here to care for him and protect him, I can't leave that smile and heart of golden innocents.

I eat healthily and exercise in a blind hope of preserving my health.

I stand here fighting the impossible fight that isn't even a fight really, it's just the circle of life.

My eldest son tells me, "Don't worry mum, I'll care for him."

"I know you would" I reply, "but one day you will have a wife and family of your own and I could never expect you to be your brother's carer, he needs you to be his brother and love him."

I'm not going to live forever here, even Lord Voldemort didn't manage that.

I can look after myself to keep me here with him for as long as I can but then what?

The only answer is to come to terms with my son being looked after by others. To trust others to be his everything.

We have already started respite, allowing him a day or night sometimes in the care of others.

Preparing us both.

He's creeping towards being a teenager, some have said it's the crucial time to start adding outside care into his life. I still feel torn yet I know I'm helping him adapt for the future.

Maybe this is my subconscious back up plan, maybe it's the sensible bit at the back of my mind saying "no one lives forever".