Theo Lucas Kingsley Monk. Theo Lucas Kingsley Monk:
Our beautiful boy

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The relationship with a child, who is so dependant long after other children have gained a high degree of independence, is very intense. The child with complex learning disabilities becomes an extension of the parent. We knew that Theo would always be dependant on us and so we remained fiercely protective of him. I could not contemplate anyone looking after him for a night. His death was devastating for us. Losing Theo was like losing a part of me. I fell apart and was not comforted by all the things said (in kindness) by other people. I was just terrified that Theo would be lost to everyone and forgotten over time. I wrote the following which was printed in the programme for his birthday concert:
Theo Monk - Theo's Legacy.   WHAT DO YOU SAY?
What do you say to a grieving parent? What is there to say?
Don't say “The first year is the worst”
His years ahead are gone
Don't say “It's early days”
The days are long and of no consequence
Don't say “You'll get over it”

Grief is not a temporary hurdle put in the way of everyone else's life.
It is immeasurable and intangible. It is not an illness. Do not look for
a recovery. Do not judge. Do not talk of “moving on”. This implies
letting go of him and only heightens the despair. Grief is an intense
emotion that can ease with time. Bereavement is a sense of loss
that remains. Nothing can change that loss. So what do you say?

“I miss him”
“I love him”
“I will always care”
“I remember when…”

The loss of a child is not in the natural order. It is a parent's nightmare.
The pain is impossible to bear. The joy of parenthood is suspended.
The future is keeping the memories alive.
The future is keeping him here. He is not left behind.
Anna Kingsley March 2009
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The loss of a child is not something for a parent to “get over”.  Time does not heal the pain.  What I have found is that one learns to live with a broken heart.  The reality of the loss never goes but one learns to carry it around, whilst still living a life.  Life is not the same and never will be as good, but it is still a gift not to be rejected. 

I have the benefit of the many friends who knew and loved Theo. Knowing they remember him with affection is precious.  Knowing they will readily talk about him is comforting. 

I have had support from the chaplaincy at Birmingham Children’s Hospital and counselling from Edwards Trust, based in Birmingham  Both of these services were - and continue to be - invaluable.  Being able to share thoughts and feelings with someone else has been very therapeutic.  There is no time limit to grief and being able to talk to someone who does not shy away from the subject and is empathetic without being too emotionally involved is so supportive.

Newbold on Stour, Stratford upon Avon, Warwickshire.