Sibling

Today's blog is special guest post by Rhona Martin:

What is it like being the sibling of someone with a disability?  I'd never been asked this until I was invited to contribute to this blog.  I wonder if other siblings of disabled people are asked how they really feel?  I hope so.  For me it's a loaded question, because it's probably like any brother/sister relationship – laughs, arguments but also extra responsibilities and considerations.

No satisfactory diagnosis was ever offered; back in the mid-1970s, when my brother was three, various explanations like Cerebral Palsy, chromosomal abnormalities and oxygen starvation during birth were bandied about.  Whatever it was, it caused certain areas of his brain to develop slowly, while other areas flourished normally.  He didn't walk until he was four and his speech was way behind his peers, but he got there – and a more determined person you couldn’t meet. Relentless obstinacy has been his saviour, enabling him to attend the same school as me until he was nine, followed by a specialist school until adulthood.

Fortunately his health has always been robust, but a couple of years ago, after months of hassle from kids in his town, he became very depressed and self-conscious about his looks, so he was prescribed anti-depressants.  Naturally, we reassured him he is as good-looking as the rest of his family!  He was delighted!  He is a vibrant, funny person - full of unconditional love and compassion, with an enormous love of words and fascination with music. Unfortunately his condition has prevented him fully expressing these enthusiasms.  Even as a 37-year-old he can barely read or write, despite our efforts to help him. His balance and co-ordination are impaired but he has the mind of a bright but very giddy, imaginative seven-year-old. This creates plenty laughs but has also left me and our Dad weeping with frustration and open-mouthed in disbelief.

We lost our Mum to cancer when I was 14 and my brother was 11. So I instinctively assumed a new and confusing role of a sister with maternal responsibilities.  It was easy for me to love and care for him and it distracted me from my profound grief, but at times it has been a bitter-sweet love.  I was angry and sometimes embarrassed because he was different, I felt I had to put him first, to defend and protect him from ignorance and prejudice.  Rather than having the same carefree self-absorbed outlook of other teenagers, I had other responsibilities and I resented it. Nevertheless it has influenced my outlook, helped create an open-hearted, caring person who is acutely aware of the feelings, emotions and needs of others. 

He now has an independent, happy, fulfilling life in his own home, in a nearby town with the aid of a fantastic charity called Enable Scotland who provide live-in carers. He has a part-time job in a recycling centre, an enviable social circle and doesn't need nor expect me to be on standby to save the day.  So now it's my time to look after me, be who I'm supposed to be and stop feeling trapped by circumstance, and that’s what I'm doing, just rather later than I anticipated.  I am concerned for his future though - how the impending welfare cuts will affect his quality of life or what will happen when I'm the only member of the family left.  The worrying has stopped but I'll never stop caring.

Video is The Cocteau Twins - Love's Easy Tears

Thank you Rhona. I know this was a difficult piece to write, but you've done it beautifully.

Brother

My daughter wanted a baby brother or sister. Desperately. This was no reason to give her one, though. I mean, she also yearned for a Barney The Dinosaur, and there was no way she was having one of those b*stards.

But we wanted another baby just as badly. Which meant things were very difficult when we lost some along the way.

Eventually, despite the battle-scars my body gained in the trying, 10 years after we gave birth to our daughter, we cooked up a baby brother for her.

At nine weeks I had some bleeding and was sure I’d lost this baby like the others. That was it - I’d had enough of sitting in the Early Pregnancy Unit, having gel rubbed on my belly and being shown a scan that was missing the tiny, vital, throbbing heartbeat of life. A previous ruptured ectopic pregnancy had robbed me of one of my inner tubes. I couldn’t use a puncture repair kit to fix this. If this baby was gone, that was it. No more.

But the little bugger was there. Clinging on, stubbornly.  The shock of the good news surged through me and from that moment on I knew it would be OK.

How would our daughter cope with the reality of a baby brother? A brother who would at first have to be fed at odd hours, wreaking havoc with our strict mealtime routines? A brother who would end up eating some of the things she wasn’t allowed?

This photo is the moment I knew she’d accept this. It was my son’s second ever bottle of formula milk, after I’d given up breastfeeding when my portable, personal, dairy delivery system failed to keep up with its customer’s requirements. (I didn’t let her give the first bottle - I thought it wise to do a test run when she was at school).

“He has to have full fat milk, doesn’t he, Mum?” my daughter asked me. ‘Not skimmed, like me. I’m not allowed full fat.” 

“That’s right. Babies need it to grow big and strong.” I said. 
She considered this for a moment, and nodded.

“Good. We won’t use up all mine, then.”

This thing might work, after all.

Video is Sister Sledge - We Are Family. Yes, yes, I know it says: 'I've got all my sisters and me', but it's the general sentiment I'm going for, all right?