Malcolm

I wonder how you are. I wonder where you are.
I am sure you heard our little Malcolm died. If not, then
I am sorry to give you such terrible news. He died in
hospital on February 22nd two years ago. It was 4.47 in the
afternoon.
I was with him.

I was angry when you left but I can understand your
despair. His birth was a horrendous experience for you, the
long hours of labour, the sudden emergency plan for a C-
section and then the doctor pulling him out with forceps at
the last minute. When they told us he had brain damage it
was more than either of us could bear.

I see now it was a bad decision for you to stay at home
with Malcolm while I finished my season with the orchestra.
I should have stopped work to help you. What difficult days
you had. Neither of us was sleeping, we were both short
tempered and always ready for a fight.

I remember the many hospital appointments you had to
take Malcolm to as well as managing all his procedures and
medications while you were exhausted. It was grossly unfair
of me to leave all this to you.

You know I always felt a special rapport with our little boy.
I could see a deep wisdom in his eyes as though he had the
answers to all life’s mysteries. I saw him as a special gift for
the two of us. If only I could have learned his language.
I know you do not agree with me on this, but it is what I
feel.

After you left he had so many emergency hospital
admissions, his life seemed to hang on a thread. He had
heart and lung problems, pneumonia, an operation to drain
fluid from his brain and an intestinal blockage that had to be
removed. Each time he came home with more tubes, more
medications and more danger signs to watch out for.

At first the doctors were understanding, explaining the
issues, giving options for treatment and leaving the
decisions to me.
As time went on though, they talked more about his level
of suffering, his quality of life until one of the options they
offered was not operating, not reviving him, letting him go.
Those were the time I most wanted to talk to you.

His last crisis was a major infection with a sky-high
temperature. The doctors made it clear they thought more
interventions were not in his best interests.
In the end, I followed their lead. When Malcolm did not
improve, they just did all they could to keep him
comfortable and pain free. That is when he died.
Our little Malcolm died!

If I could go back, I would make a different decision. He
trusted me to look after him and I betrayed him and you.
I want our little son back.
He was unique and very special. I miss him so much.
Where are you?

P.L: I wrote these lines about a family I once worked with

Jamie’s Family

Bridget is sitting with a cup of tea and a cigarette at
the kitchen table.
It is three in the morning, she is wide awake – again.
She always lies in bed wondering whether to get up
or lie in the dark worrying.
Getting up might mean disturbing Patrick or waking
Jamie in the next room.

Jamie is two years old and hardly ever sleeps through,
so waking him is to be avoided.
Tonight, she had dozed off and then woke in a panic
remembering the TV news of young disabled people
being badly treated in a care home.

This is her biggest worry: about what will happen to
Jamie when she dies.
Her own health is an issue now. She is always
stressed and she is sure that is causing her weight
gain.
The doctor said she is not quite obese yet and
prescribed antidepressants. Antidepressants!
She knows full well she needs some practical help
with Jamie more than pills.

She knows Patrick is not happy. When they were
told Jamie had a genetic problem, his mother said,
‘It didn’t come from our side of the family!’
Bridget has been wondering ever since if Patrick
blames her for Jamie’s disability.

He lost his last job because of Jamie.
In the early days, management gave him time off to
go to appointments but then had to sack him.
In his new job he works all hours and really needs a
good night’s sleep.
Bridget feels Patrick is torn between loving Jamie and
wanting his career back on track.

The doctor had asked her about her social life.
Social life? That was before Jamie came along!
Kiera is lonely too.
Her friends don’t come round anymore and there’s
no money for after-school activities. Kiera doesn’t
complain though, she dotes on her little brother.
That is the positive side. Jamie is so loveable and
Bridget can’t imagine being without him.
Being without him – more fuel for the small hours.

P.L: I wrote these lines about a family I once worked with

Dreams of a Deafblind Person

I dream that one day... I will be "less" invisible for Humankind.
I dream that one day... Humankind will recover the patience it has lost.
I dream that one day... Humankind will recover its wisdom and will understand my communication.
I dream that one day... Humankind will be close again as in ancient times.

I dream that one day... Humankind will be free of prejudice and will be able to touch me without any fear.
I dream that one day... I won’t be "just a brick in the wall" anymore, as Pink Floyd said in the song "Another brick in the wall".
I dream that one day... I won’t need to "drink from the same water fountain" as Carl Jung, one of the founders of modern Psychoanalysis, said.
I dream that one day... Humankind will be able to eliminate the label that deafblindness is the most terrifying condition.

I dream that one day... Humankind will assume that "being alone" doesn’t mean to be abandoned.
I dream that one day... I will sow the "loneliness" that deafblindness imposes us as a possible aim to be enjoyed because we won’t be afraid of ourselves.
I dream that one day... I will change the pre-assumptions concerning my identity and the sentence which is currently repeated "Poor thing, he/she is deafblind" will be left in the past.
I dream that one day... Humankind will see my being and will indeed value my essence as my fight and then will say "Great! He/she is a deafblind person".

I dream that one day... I will erase the shame from Humankind’s mind as a tool of controlling.
I dream that one day... Humankind will understand and value that all people are a Divine Creations: alike, however, incomplete.
I dream that one day... I will not just "exist" but actually "be".
I dream that one day... I will learn to be "strong" so that nothing can defeat me.
I dream that one day... I will be "me" so nobody will forget me.
I dream that one day... My dreams will design the future. I dream that one day... Humankind will be "human".

By Alex Garcia in Brazil. He is a deafblind person with hydrocephalus and a rare disease