Learning from life . . . A mother reflects

Microboards are one way of learning to find different,
better ways forward. There are many others.
This isn’t the right way, or the only way for everyone.
But it is for us and it just might be for you.

Our growing belief is ...
     When we allow Eli enough space,
          and enough trust,
              it is actually he himself,
                    who attracts great people and opportunities into his life.

     As time goes by, we realise that the skill he requires of us as parents
          is not one of endless doing
              but rather of letting go
                    and letting be.

     It is the gift of a gentle generosity which trusts in his wisdom,
          in the innate goodness of others and
               in the ability of life to just flow in the right direction.

To say that this is hard to do when you are the parent of a child
with a disability is the understatement of the century.

One day,
in fact one moment on one day,
shines out as the time when things really began to change for us,
a glimpse of warm, yellow sunshine on a bleak and cloudy day.

Eli was starting a drama class at the local theatre.
We were sitting in the foyer,
quietly waiting for everyone to arrive
when his face suddenly lit up,
and he was smiling like his heart would burst
and crying out, “EEEEEEEEEEE!!!!!  EEEEEEEEEEEE!!!” 

This is one of the few sounds he can make with any kind of control.

I turned around to see what could have created such an outburst,
An old school friend of his was walking towards him,
an expression of comparable pleasure on her own beaming face.
“Eli! Eli!’ she cried, and the two embraced with great passion,
Eli drooling all over her face and hair, and she not caring a bit.
The affection between these two was tangible . . . real . . .
clear as crystal . . . as blood,
as the beating of a mother’s heart.

In that moment that I finally got it.            Other people love Eli.

How could I have missed it, have not seen the glaringly obvious?

They love him truly, for whom he is,
and I had been oblivious to the fledgling friendships
which often hovered around him.

I allowed myself the pre-requisite period of mourning
                              ... and then I resolved to change.

That day was four years ago.
The journey since then for us has been of increasing wonder
at just how many people there are, in fact,
who can and will love our child with an affection
which is at least as good as ours.

Perhaps the most awesome part of this journey has been handing the challenge of planning Eli’s life over to other people. What was stressful and burdensome to us as Eli’s parents, at the limit of our energy and creativity after eighteen years of hard labour, is a source of fun and excitement to his circle of friends, a dynamic group of young folks aged from twelve to twenty three.  Their perspective on life is dripping with the optimism of their years and has infected our dreary expectations of what lies ahead with rich hopefulness and big dreams.  They meet regularly now, with Eli, to plan what great adventures might lay ahead.

They have suddenly transformed Eli’s endless, exhausting, relentless destructiveness of anything and everything, which has depressed and frightened me for years (not to mention the expense), into his awesome ‘ability to dismantle things’….and so the seed  of a product-testing business is planted, with a vision of Eli earning money and doing what he loves every day.

His enthusiasm for life and considerable ability to generate energy, love and laughter is seen as a significant contribution to others and his plan to be a ‘cheer-er-upper-er’ (as his friends so neatly term his community service project) has been born.

Once invited to share the responsibility of making Eli’s life a magnificent one, it seems there is no stopping his friends’ determination that goals are reached and that dreams come true. They attend to the significant but often overlooked details which give his life an intense and unique flavour…
   which music to listen to,
   which websites to see,
   which magazines (no, I don’t suggest you ask!!!!) to read,
   which gigs to go to,
   which experiences are absolutely essential rites of passage
   for any teenage boy.

It was with tears in our eyes and fear in our hearts that we watched a couple of young lads pushing his wheelchair up the road to catch a bus at 9pm one night a few weeks ago, off for a typical, terrifying, night-time adventure. He survived what once would have been an unreasonable risk, and so did we, just. I have to admit that there is now more happy anticipation than dread as we look forward to the next adventure.

I know how impossible this must all sound to most parents,
and it would have sounded impossible to me, too, not so long ago.

But if we want different and better outcomes for our kids,
we have to change the way we think and the way we see the world.

We need to start expecting more of others, and of our communities.

We must stake our claim to a good life for ourselves,
and demand that society makes the changes necessary
for people with disabilities to be fully included in life.

We must allow others to experience the rich, nourishing, wonderful things
that come from being in relationship with our children.

We must shout their too often wasted and dormant gifts from the rooftops,
and brag shamelessly about their awesome abilities.

We must start expecting that our kids will have relationships and
that they can and will have real friendships throughout their lives.

We must learn to choose our children, as they are,
not waste time grieving for some ‘dream child’
we were probably never going to have anyway.

There is no Holland, and no Italy,
     just life as it always has been,
          real, and unfair, painful and challenging,
               diverse and sometimes wonderful.

We must embrace our kids unconditionally,
               and we must learn to let them go…

Microboards have been a significant part of this journey, and since starting with the Vela Microboards Australia project we often can be found pinching ourselves to check that this life we have now isn’t some kind of wild and magical dream.

Read what Eli's friends say