To Our Neighbour who left us a note:
We have a problem. We live in this problem
We have a child. We have a child that is
mentally handicapped
You decided that it would be a good idea to
live in a close neighbourhood like this
So your children could go outside and play with other children
We moved here for the same reasons
You think me selfish to let our child go
outside every day
You say it is to let him be a nothing, a nuisance and a problem
The noise polluting whaling is how he
communicates
Yes, it is often difficult to understand, respond
to, and it does get on one’s nerves
Like every child’s constant chatter can.
Mostly, though, it is music to our ears
Our hearts rejoice to see him run and play
and laugh as he does
Ah “normal”. How lovely if “normal” was
more than a setting on a dishwasher
And that nature trail, thanks for that, we do
go there often
We run and make noise together. We love it!
We see so many wonderful things on that
trail. We take lots of pictures
We would like to share some of them with
you sometime
We often take him to the city
There we hear sounds of crying babies, music,
and barking dogs there too
He laughs and whales with joy because it is
just like being here. He is such a joy!
Yes, in many ways he is a hindrance
We cannot go out together, no dates nights,
no walks alone
We have friends but we cannot get together
with them
Sometime we can catch a few minutes and sit
on our back porch
Sit together listening to the sounds of the
evening
As neighbourhood families connect at the
end of everyone’s busy day
We hear too, the sound of his breath, our
son’s breath as he sleeps
And before we drop off into our troubled
slumber
We try to remember to give thanks for
everything,
Absolutely everything.
Thanks very much for your concern about his
long-term care.
We too worry about who will care for him
when we are gone
We too are sad that he will never have
those “normal” growing up events
But we try to remember that normal is only
a setting on our dishwasher
We like your suggestion about donating his
body when he is gone
How wonderful it would be if his body was
able to teach us more
Teach all of us much more
More than this syndrome, his
personality, and his love has
already taught us
You admonish me to deal with him “properly”
As though you believe there is one
‘properly” way
There are many helping us, and other
parents like us, figure out what “properly” is
It is in the dark of such struggles that I
am glad for the “normal” on our dishwasher
You assault me with your accusatory
question
“What right I have to do this to hard working people?”
I understand this frustration. I have heard
that our child reminds others that life is not fair and that you too, might one
day face a trial with your child, or a grandchild, that pulls you so thin the
dust in the air passes right through you.
It is my sincere hope and prayer that
this not ever come into your life.
Oh yes, we are hard working people too.
Your conclusion that we feel we are
“entitled to special treatment” is incorrect
We need help. Our child needs help
And exactly what that help looks like is
still undefined
We fear that others will attempt to define
this help
Define in light of ill informed and
incomplete information
Shaped by their preconceived conclusions and judgments
The out of that pot specific programs
develop that lumps all “like” children together
You see, your children our child - all
children are different – all with different needs
Each is deserving of the best we can
provide
I would gently remind us both that children
deserve a loving environment.
Now, as to your idea that we help others in
our community by relocating
As much as living in the beautiful woods
sounds like a lovely idea
Perfectly idyllic really,
We cannot do this. Moving is not an option
for many reasons.
Our funds have been depleted.
Schools for our child are not available in
many places
No parent can be asked to put their child
in harms way to please another person, no matter how many those persons add up
to. It would be irresponsible.
It has been good to have had this letter
from you, even if your “guts” as you say are in typewritten black ink – surely
not the colour of your heart – the pink paper leads us to believe that you are really
sweet but having a particularly stressful, upsetting, grey day. We do understand
that for sure.
Now to your final comment … there are no
words except that yes, I will do the right thing. I will tell you, in all truth
and kindness that I Love You and hope that we one day can be friends under
wonderful circumstances
To love and be loved
By
Jane Jones, in Love to Stephen etal
