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,
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