Friday, April 26, 2013

6 Months Ago.

6 Months ago tonight...

6 months ago tonight I saw you smile.  You were, for a few hours, free from the pain that had plagued you for so long.  You were surrounded by the people who loved you, and you were the center of the universe.  

Quite happily you went from one cuddling embrace to another, lapping up the love from everyone around you.

6 months ago tonight we took all your dressings down, we de-needled your port and I took you into the shower.  We shampooed and conditioned the few stray whisps of hair that were left on your beautiful little head.  We played our soapy snuggles game.  We played 'wash the baby bum' and we had soapy tickles.

6 months ago tonight we dressed you in another brand new pair of jammies.  Ariel ones.  We snuggled you into your bed with your beloved dolly and we told you we love you.

6 months ago tonight you smiled and signed love to us.

6 months ago tomorrow our hearts were shattered into a million pieces.

It is so hard to comprehend that you have been gone for 6 months tomorrow.  I still wake up in the night because I hear you cry for me.  I still wake up and can hear you playing in your bed.  

Every day there are a million reminders around me of the fact that you just simply aren't here...  and I miss you.  

We all miss you.

I miss you so much it hurts...  and it hurts every minute of every day.  

6 months on and the pain hasn't gotten any easier...  

I don't think it ever will.

Friday, April 12, 2013

Just Imagine...


Imagine for a minute...

Imagine what it's like to hold your small daughter in your arms, cradling her gently, whispering soothingly to her while her tiny body is wracked with pain and nothing you can give her helps.

Imagine what it's like to see her face, a face you have always seen lit up with laughter, now contorted in pain so deep that it resounds in her eyes, eyes that beg you to do something, anything to help her.  She hurts and she is afraid, and there is nothing you can do except hold her and whisper to her and let her know you are there.

Imagine watching her sleep, watching her little chest rise and fall with each laboured breath, knowing that at any moment it could all be gone.  Every night, you spend hours sitting, watching, fearing that every minute that passes could be her last.  

Imagine feeling so incredibly hurt and betrayed by the world because this is happening, because you are trapped inside a nightmare and you know that you are not going to wake up.  

Imagine that your world is crumbling around you and there is nothing you can do to stop it, because this is a fight that you cannot win...

Imagine that this is your life...  your world, your everything...

Imagine what it would be like to live like this, day after day, week after week...

Imagine now that YOU did this to your child.

Imagine that you gave her toxic drugs purchased illegally on the internet to combat a deadly disease that she didn't have.

Imagine you are the reason that she suffers.

Imagine knowingly and willingly inflicting on your child a life of pain, suffering and misery.


Imaginary glory.

Attention?  Money?  Power?

I don't know...  but what I can tell you is that this isn't imaginary...  this is real, very real.  

It happened.

A child who was once very bright and healthy is now battling a potentially fatal battle because her mother fed her chemotherapy drugs to make her sick.

I know that this happens from time to time...  you read stories about carers in other places who make their children sick...  but this is different.


I know this child.

I know this mother.

I trusted her.

When she said things like:

"It's a world no parent should ever have to see . . . a world where you are woken each night by the screams of children in pain . . . where you can hear children vomiting from the other side of the ward, retching so hard because they have nothing else to throw up."


I sympathised with her because those statements resonated with me.  I knew, first hand, the  horrors she was talking about.  I have been there, I have seen it, I have smelled it, I have felt it...  I have walked those halls and I have lived that life.

The difference being that she did it to her child on purpose...  we had no choice.  We didn't ask for it and would have given anything to have been sent on a different path.  We didn't want that life, apparently she did.

The impact that this is going to have is going to be phenomenal.  

The people that donated to this woman may not do so again out of fear of being scammed, so there will be lots of worthy, GENUINE people who will miss out on kindness and help from strangers, kindness and help that, I know from personal experience, can make a profound difference on a person's life when they need it most.

The parents who reached out to this woman, who shared stories, hugs and small parts of their lives may hold back in the future for fear of being burned again which may leave parents vulnerable and alone when they most need support and compassion.

The staff who were involved may become more skeptical of parents which may make it harder again for parents who need it to get help.

That is not even beginning to take into account all the other little bits and pieces...  the accommodation that was provided to her at the expense of the government, taking away a much needed room from a family who was genuinely in need.  The blood transfusions, the drugs provided, the tests that were done, the theater blocks...  all of which were taking resources away from a genuine patient with a genuine need...  and then there's the support and the charity.

All resources taken from children in genuine need because of one mother's desperate and pathetic need for attention.  

And I think that is the part that bothers me the most.  This woman willingly inflicted on her child pain and suffering that is unthinkable all for some perceived glory...  she made friends with families, she infiltrated their worlds...  and in doing so, she betrayed trust.  

Not only mine, but the trust of every other parent that has been in this situation.  

She has made a mockery of everything that our children have endured.  

And for what?


Facebook likes?


I feel like a part of my world has been shattered.  I feel betrayed...  and I feel phsyically sick that anyone, least of all a MOTHER, could willingly and knowingly inflict this kind of suffering on an innocent child...  a child who now, may not recover.

That is something I don't need to imagine.