Our Poem for H

Life in a family with a disabled sister is normal to me, normal to us all. It is natural for us and we now couldn't imagine it, and wouldn't have it, any other way. It wasn't as we expected though.

I was eight when H was born, a surprise at 5 weeks early. I remember the hushed phone calls and the silence from adults when asking for news. We knew something had happened, that this thing that had happened was to do with the new baby, that the new baby was a girl and that she wasn't coming home - "not yet".

Days became weeks, and during these weeks we came to understand that H was very ill, that she was 'disabled' and that it was probable that she would not live. We all felt a little helpless miles from the hospital - not that we could do anything even if we were there. She was in an incubator with scores of tubes attached to her, surrounded by machines and specialists. I cannot hear the Athlete song 'Wires' without thinking of baby H. She was so tiny, yet so very, very strong.

She astounded her doctors, by fighting back from each new challenge. They said if she had been born a year earlier, that they would not have had the technology to save her. The thought does not bare thinking.

I had always thought that our mother had taken this all in her stride, that the moment she laid eyes on H she didn't see all the things 'wrong' with her and that she just saw her little girl. But I was wrong. Mum described her feelings of that initial week as that she hadn't got 'what she had ordered'. That you have this perfect picture of your child in your head and that when her child was not perfect in the ordinary way, that she felt cheated and guiltily recalled that, in the shock of the moment, she had not wanted her.

Time passed and the shock gave way to the inevitable love that anyone who knows H cannot help but have for her. I remember a poem Mum shared with us to try to explain to us why this had 'happened' to us. It is a commonly shared poem in families who have disabled children. It brings understanding of the important role our special families play. Its author is Edna Massionilla and I want to share it with you:

Heaven's Very Special Child

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

So, you see, those who have not experienced loved ones with special needs may misunderstand H as a burden rather than the gift she really is. I am not saying it was easy. In truth she turned our world upside-down and inside-out, but, our world, albeit upside-down and inside-out, is more complete with her in it.