The carer needs care too.
I’m a mummy to 3 gorgeous boy’s but I’m also a carer.
Hero is 9 years old and from the day he was born he has needed more care, different care to our typical children – day and night.
Each year I told myself it would get easier, like when he couldn’t walk i would say that if he could walk his frustrations would become less, but when he did walk at 3 1/2 year’s it only changed not got easier, still now he can’t walk far and falls a lot! Pretty bad falls too. Or all the year’s we’ve waited for his voice to come – we’re still waiting for that.
But each year has come and gone and each year it’s got a little harder bringing with it new worries for the future.
Hero regressing when we feel he could regress no further or when a new fear for him rears it’s ugly head.
We are now heading towards puberty and what will this bring for my son? !
I have always said I don’t need help! I am his mother so I will do this all myself, after all he’s my son, my baby, my responsibility.
I noticed myself changing, forgetting about myself as my other roles took all my time. The tiredness. …..oh God the tiredness is relentless and unforgiving! I started to see myself as only a carer and mother.
Health professionals and hero’s teacher would ask what help do I get? Do I get a break because they know how hard it is and maybe I should consider some respite?
” No! I can do this myself, I don’t need help ”
I saw their expression change and they said the word’s ” everyone needs a break, no one can be expected to care for someone if they never care for their selves ”
Yet still i pushed and pushed myself.
No one can truly understand what a special needs parent goes through every day unless they’ve done it. I had no idea before I had hero, I thought I did but I was wrong .
I had no idea of the kind of care that was needed, or the exhaustion and I certainly didn’t understand what it was like watching your child struggle or in pain. Even the beauty and love because that’s what gives us our strength doesn’t it?
I never spoke to anyone about it, not friends or family , everything kept inside.
That’s one of the reasons I started to write because some how it seems different to tap away at a keyboard than talk face to face.
I was so scared that people would think I was a failure for being so mentally and physically tired.
Then early last summer I hit my breaking point. The thought of the 7 week long summer holiday on my own felt like I was being suffocated.
Panic attacks and silent tears pouring down my face whenever I was alone. So terrified of letting my children down and not for filling my role.
Then at the beginning of the summer holiday my dear nan passed away and my wall I’d built around myself started to crumble.
I picked up the phone and called our local council asking for a social worker who could help me arrange some respite “I’m so tired ” I muttered down the phone trying to hold back the tears.
A lovely social worker helped us arrange respite. One of hero’s class TA’S now take hero out on little trips, he loves the social time, time that’s just for him and comes home with a smile on his face.
And in that bit of time once a week i spend with my other children and even have a conversation with my husband sometimes.
That bit of time doesn’t solve everything but for a couple of hours i can just be a mother. Maybe one day I’ll learn to allow myself some time.
So why do we feel we must do it all or we’ve failed?
Why do we have to push ourselves until we break and then some more?
I learnt that we need to be kind to ourselves aswell.
That we have to give ourselves time to breathe.
And there is NO shame in having a little break, I’m still doing it but now I let myself breath too.
We are a stronger carer if we breath sometimes.
We owe it to our loved ones to love ourselves aswell.