As time went on though, they talked more about his level of suffering, his quality of life
'After you left he had so many emergency hospital admissions, his life seemed to hang on a thread'
This is number 36 of fifty pieces of poetry and prose written by Peter Limbrick as a monument to adults and children who have lived and died or are living now in inhuman situations. They are all inspired by real experience.
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 times 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?
The other 49 pieces can be seen here:
In Mind - a written monument to all people with intellectual disability. (Items 1 to 10)
In Mind - a written monument to all people with intellectual disability. (Items 11 to 20)
In Mind - a written monument to all people with intellectual disability. (Items 21 to 30)
In Mind - a written monument to all people with intellectual disability. (Items 31 to 40)
In Mind - a written monument to all people with intellectual disability. (Items 41 to 50)
