Special needs parents are candles, burning between hope and despair

Parents of children with additional/special needs and disabilities are often labelled negatively; ‘troublemakers’, ‘confrontational’, ‘needy’, ‘over-sharing’. I’ve seen parents blamed for their child’s disability.

I’ve seen parents told that they have no right to speak on behalf of, or share details about, their child. I’ve seen parents told that they are wrong to feel or express any kind of negative emotion about having a disabled child…

I could go on, but I won’t add further to this all too common judgemental and stereotyping narrative. It’s a form of hate speech.

Many parents of children with special/additional needs or disabilities are completely committed to giving their child the very best that they can offer as parents. The reason we (as yes, I’m one too) can sometimes pick up some of these negative labels is that we won’t take no for an answer when it comes to our child.

We won’t settle for second best, whether that’s in the support our child needs, their education, their health and care, their life opportunities, anything. We won’t go away quietly when we are turned away, we won’t stop telling the world about our child, we will speak on their behalf when they can’t, we won’t ‘just accept’ things.

We want the best for our child, we demand it, we will be heard. We will enter into conversations, meetings and appointments with our boxing gloves firmly on.

I love the writings of William Brodrick, a former monk, former barrister, then fiction writer. But it is in his writings that form part of the Celtic Daily Prayer (Book 2, Farther Up and Farther In), where he echoes the words of the Old Testament prophet, Habakkuk (1:2-4), in providing us with a glimpse of life as a monk.

With very little adaptation, it can very easily be a glimpse into the life of a special needs parent; so with apologies to William Brodrick, here it is…

Once you’ve heard a child (or special needs parent) cry out to heaven for help,

and go unanswered,

nothing’s ever the same again.

Nothing.

Even God changes.

But there is a healing hand at work

that cannot be deflected from its purpose.

I just can’t make sense of it, other than to cry.

Those tears are what it is to be a special needs parent.

Out there, in the world, it can be very cold.

It seems to be about luck, good and bad,

and the distribution is absurd.

We have to be candles, burning between hope and despair,

faith and doubt, life and death,

all the opposites.

That is the disquieting place

where people must always find us.

And if our life means anything,

If what we are goes beyond the walls of our family home and

does some good,

it is that somehow,

by being here,

at peace,

we help the world cope

with what it cannot understand.

© William Brodrick, adapted by Mark Arnold

Because the world cannot understand. None of us as parents understood before our special needs child came into our lives.

None of us had the first idea of what would be involved, the worry, the diagnosis, the bewilderment, the endless soul-destroying meetings and appointments, the sleepless nights, the medication, the hospital visits, the loss of friends, the loss of freedom, the list goes on…

Is it worth it? Yes, of course it is… our love for our children is greater than all of this. That’s why you’ll find us in that ‘disquieting place’; that’s why we help the world to understand that it’s not all bleak, it’s not all desperate.

As well as despair, doubt and death there is hope, faith and life… And sometimes, in that disquieting place, is where we hear from God; that cry to heaven doesn’t always go unanswered…

So, come and find us there, spend time with us, get to know us, cry with us, and maybe even journey with us for a while.

You might find that those negative, judgemental, hateful stereotypes just fall away, and you’ll discover that underneath it all we are just like candles, shining a light on a part of the world that the world often chooses to ignore.

We’ll keep on burning, so why not shine with us?

Mark Arnold, Director of Additional Needs Ministry at Urban Saints. Arnold blogs at The Additional Needs Blogfather. This article was re-published with permission.