His last day

On 10th July 1998, we received a phone call at 6.30am to come to the hospital quickly. There was yet another incident where Finbar needed prolonged resusitation. We sat with him until the doctors’ rounds where his present condition was laid out to us. He had no gag, swallow or suck reflex. There was minimal brain activity.

He was being fed via a nasal tube straight into his stomach and a saline drip. He was being fed 8 mls every 2 hours. As he had no gag reflex, if/when he brought any of it back up, it would go straight into his lungs and he would ‘aspirate’ a medical term for asphyxiate or choke on his milk.  They would suction him and give him oxygen.  As a comparison, his twin was being fed 80-100 mls every 3 hours.

He needed suctioning on an hourly basis, it had started as 3 hourly when he was born, to get the fluid out of his breathing passages.

As we went over the last 11 days, I realised that my son was either going to die of starvation or choke to death. I won’t use the fancy medical terms that make it sound all pretty and nice.

Because of the constant fluid in his lungs, Finbar was unable to receive the full amount of oxygen he required for his body and his breathing was often reported as laboured. Each resusitation needed was taking longer and longer. This caused more brain damage. It was a spiral downwards.

As we held him, we would hold an oxygen funnel so he could receive pure oxygen. He needed it several times that morning.

His feeds were increased to 10 mls and he received his last feed at 10.30am.

We held him.  *I* sensed him starting to leave at 11.40 am, and believe he crossed over at 12.10. My ex husband believes that too.

The medical records state that at 12.10 pm, Finbar stopped breathing and as per my instructions, was not resusitated.

He was pronounced dead at 4.30 pm.


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The truth will set you free

I have spent the morning crying.

I have finished reading Finbar’s medical records, and have gained a deep, real understanding of what happened. I have sobbed and cried and shook like I have never before.

I know the truth. The whole truth and nothing but the truth. I don’t know what it is I was looking for. I don’t even know if I have found it.

The one thing that has really hit home to me, is all the miracles that I clung to, all the ‘achievements’ I would share that my son made, all that is a lie.  There were no miracles. The things I saw, were all a body’s normal reaction when it is slowly dying. I remember my doctor explaining to me that there was no PHYSICAL explanation for how my son lived as long as he did. Medically speaking, it was impossible. THERE is the miracle.

There is so much I didn’t understand. I wonder why the staff did this, that or the other. I understand now. They were reacting to the fact that my son was slowly dying and were doing all they could to make him comfortable.

Another thing I realise, there was never any hope. I had clung to hope, as we are taught there is always hope. No, that was a lie too. There was never any hope of my son surviving. Out of this dark tragedy there are other hopes, but the hope I had that he would come home and live with us? That was a lie.

Some of his notes have jogged my memory. I don’t remember certain parts, did I block them out or did I think they were unimportant? I don’t know, but I remember everything now.

I have sat here thinking and realising and one thing has not changed. What happened is not ok. I have accepted what has happened, but that doesn’t mean what happened is ok. It never will be.

I don’t feel bad or wrong for thinking this.

I know the truth sets you free, and in a way, I am pleased that I have the understanding that I have. However, right now, the impact of understanding what my son’s life was like, is incredibly painful.  Imagining him struggling for breath and slowly choking on a continual basis is a harsh reality.

I made the right parenting decision in signing a DNR. I am thankful that, while I didn’t fully understand what was happening, I understood enough to know it was the right thing to do.

As much I wish he was here, as much as my heart hurts and my arms ache, he is free.





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You fought.

I have read your medical records. Again.

I have read them about a total of 5 times in 14 years.

I read them at the beginning of last month. I don’t know what it is I am looking for, what it is I need to understand.

Someone posted a picture that said Memories never change. They don’t. I think I need to understand what is behind my memories, what is behind my interpretation of your life.

I have always looked at spirit world, feelings etc. I don’t like to look at facts and the physical. It has always been too painful.

I have googled medical terms. I have spoken to medical people.

The one fact remains. You fought to stay. No one seems to be able to tell me HOW you lived as long as you did. One thing that has really hit home to me is just how much you suffered.  You fought through things that no one should have to go through. You fought to stay. You were an innocent. You deserved better.

I prayed so hard for you. I bargained with God, to heal you. I had faith. More than just a mustard seed.

And when, in my limited understanding at the time, I heard you ask me to let you go. And as hard as that was, I did.

“I love you son, God is going to come for you and when he does, I need you to go. We love you and will miss you. We will never forget you.”

My arms ache to hold you from time to time. Now is one of those times.

I have never said goodbye to you. I never will. I will see you again precious boy. When I cross over to spirit world, heaven, whatever people want to call it, I will wrap you up in my arms and I will never let you go again.




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The Tape Recorder

It’s like I have a tape recorder and video in my head.  Certain dates trigger the play button.

For the most part, Finbar’s name is music to my ears. The memory of him brings so much love. He is talked about regularly here and it is a good thing.

However, certain dates trigger certain memories and I find it a bit hard to remember Finbar without crying and hurting.

Today is one of ‘those dates’.  Today is not June 25th 2012, it’s June 25th 1998.

The conversation between the doctor and I is playing over and over again. Every word, every feeling. It’s like it is happening NOW, not 14 years ago.

Diverting my mind only lasts a short while, and I keep returning to that memory.

I wish I could find the ‘stop’ button.

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Dear Finbar

My darling son,

Today I am missing you that little bit more. I had a bad sleep and dreamed some dark dreams and this morning the thought of you has my heart hurting.

I have thought of you at least once every day since the moment you were born. I love the memory of holding you, it always reminds me of soft candy floss.There is something so precious and sacred about holding a newborn baby, I always thought it was because you had just been sent from heaven and I was aware of the presence of God. With you though, it was more than that. I remember at 1am on Thursday, I was allowed to hold you for the first time. I had so much fear, I had only been allowed to touch your hand, I was allowed to do some of your cares, but I hadn’t been able to hold you and I was so afraid. As I cradled you in my arms, I remember looking at you and I realise now that it wasn’t the presence of God that I sensed, but I knew what love is. The pure, untainted love that a person can have. Perfect love casts out all fear. I wasn’t afraid anymore. All I knew is that I loved you.

I sang you 2 songs and to this day, I can not sing them or hear them without getting teary. They take me back to that moment of purity, that moment of connection. I will sing them to you again one day.

If you don’t mind son, I am going to meet you at the tree. Today, I am going to watch you draw. I can see you already. Today you are a teen. You love astronomy and the stars and the planets. I am going to sit and watch you and enjoy the moment.

I have been reading your medical notes and understanding more of your physical life. Each time I do, it is incredibly heartbreaking to realise the suffering you went through. I am so sorry that your brief time here was filled with so much pain.

It’s funny how we interpret situations. I can remember the dreams I had when I was pregnant with you and I always saw you with crutches. I named your twin with a name meaning ‘resolute protector’ as I always felt he would need to protect you. He did too. It is thanks to him really that both of you came out alive. To be told later that had the ‘mistakes’ not happened, you would be alive and well today, with mild cerebral palsy tells me that my dreams and my intuition was correct.

Which I guess leads me to tell you something I need to tell you.

I have told you how much I love you, I have told you how much I miss you. We talk about the things that you might be doing now and I imagine the boy you would be.

Son, I am sorry. I am sorry for not protecting you. I am sorry for not listening to my intuition and speaking up. I chose to listen to the doctors and trust their medical knowledge over what my gut was telling me. I am so sorry that I was not brave enough to stand up and say something. I am sorry that I was more concerned that people would think me an idiot for speaking up and disagreeing with people more intelligent than I.

Please forgive me for not being the mother you needed me to be.

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I’ll see you by the tree

We have a special meeting place, it’s beside a huge tree.

We have been meeting there for years.

Just him and me.

I can remember the first time I found the place

I was walking along a path

Knowing I was going to see something special

It led me to this tree.

Beyond the tree was a clearing

With green grass and small flowers

A sandpit and a playground

Filled with children.

I remember my heart racing

This was no ordinary playground

This was Heaven’s Playground

And I was a priviledged visitor.

My eyes searched every face until I saw him

My son !!

My heart was so full

And I beamed.

He was running so fast,

He had an aeroplane above his head

He was laughing

He was ALIVE !!!!

I stood quietly

Wanting to move forward

Yet not wanting to spoil the magic

Not wanting the moment to end.

All the children stopped and turned

A man was walking towards them

They all ran to him excitedly

Calling “Jesus, it’s Jesus”

They surrounded him

The love that filled the air left me breathless.

The babble of giggles and words filled the air

Jesus was smiling and talking to them all

The children slowly turned and went back to playing

All but one, my son.

I saw Jesus bend down and whisper something

And the two of them smiled

My son turned and looked at me

And time stood still.

In a moment

Our spirits connected

There were no words spoken

Yet we talked.

It was just that,

A moment and yet

it seemed forever

Just my son and I.

And just as quickly as the moment began

It ended

He smiled and turned

And ran with his aeroplane above his head.

I closed my eyes wanting to remember

Everything I had seen

When I opened my eyes again

I realised it was a dream.

In the midst of the nightmares and dark images

My son had visited

To let me know

He had never really left.

As the years have passed

We have met many times

Beside the big tree

And not always in my dreams.

The grief that has consumed me

is now just a dull ache

That rears its’ ugly head from time to time

Making my world a dark place.

When it comes

Bringing the black darkness,

I close my eyes

And I am beside the tree.

I would like to think that when my time here has ended,

and I enter heaven’s realm

I’ll see the big tree

and a little boy beside it,

holding an aeroplane

waiting for me.

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The Warrior

The Warrior faced the darkness,

People around him,

Beating him, hurting him with their swords.

The Warrior fought back,

His spirit strong,

Relentless in his determination to win the battle.

The Warrior learned to embrace the solitude,

Using the time to heal

And rejuvenate his spirit.

The Warrior heard the voice of the Maiden,

Felt the touch of her hand,

And the love from her heart.

The Warrior strengthened his resolve

to win the battle

and stay by her side.

The Warrior fought relentlessly

Receiving blow after blow

His body broken, his spirit strong.

The Warrior embraced the times with the Maiden,

when the darkness lifted

and the light filled their souls.

The Warrior slowly grew weaker,

but would not give up

could not give in.

The Warrior lay tired,

this battle never ending,

Showing no kindness to him.

The Warrior heard the voice of the Maiden,

letting him know it was ok to stop fighting,

This is not surrender.

The Warrior felt the Maiden at his side,

Heard her whisper

“I love you son, but it’s time for you to go”

The Warrior took his final breath,

Left the darkness,

And found the light.

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