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Friday, 22 November 2013

This is my Child...This is Danny

This is my child.




When he was born we were told to name him quickly and prepare to say goodbye.

We named him Danny.  And we hoped.

Danny was a fighter.  He survived the long journey, in an ambulance, to Cardiff.




At Cardiff, we were told that he had a very serious heart condition, Hypoplastic Left Heart Syndrome.  

We were taken to "the quiet room" and given leaflets.  With tears in our eyes, the only words that we could make out clearly were, "will die".

We were asked to choose between comfort care or surgical treatment.

We chose surgery and gave Danny the chance to live.

Danny travelled to Birmingham and had his first major open heart surgery at three days old.  




He survived.




At three weeks old we got to take our baby boy home.




"Ooh a baby!" people said excitedly as they spotted a pram.  "What's wrong with him?" they shuddered noticing  his tubes.

Others loved, cared and supported our special baby as much as we did.

"Half a heart, but all our love." they chorused.

We had to set an alarm to wake us through the night to tube-feed our baby.




Months later, when he had the energy to cry in the night for a feed it was music to our ears.

Treasure every moment.

At four months old we had to take our bonny baby boy back to Birmingham for his second heart operation.

Again, against the odds. He survived.

Danny was a happy, cheeky, clever baby.  

Approaching his third operation, with oxygen levels now lowering, he would tire more easily.

At three years old he would sit in the trolley as we did our shopping, while his peers walked proudly along with their parents.

"I wish my child would still sit in the trolley like that." They said.

"I wish my child could walk and run around about like yours." I thought.

We had another baby.  Why do people ask whether you would "prefer" a girl or a boy when all you want is for them to be healthy?

We were blessed with a healthy little sister for Danny, Rebecca.

At four years old we took Danny back to Birmingham for his third and most difficult operation.

He was so brave and thank goodness, again survived.

His first smile whilst still wincing in pain was reserved for his baby sibling, Rebecca.

A few days post op, he was in such pain, so weak, three big drains coming out of his chest, but he was determined to walk up and down the corridor every day to feed the fish.

He got stronger and we returned home.




He went back to school.




He joined Beavers, Special Needs Gymnastics and a Theatre Group.

He wanted to do the same things as his friends the same age: to climb, play football, swim far, ride a bike... but he couldn't.

However Danny was determined and he kept trying.




We had another healthy baby, Caitlyn.




The years went on and Danny moved to Junior School (he gained a lot of confidence in Nurture Group) and moved up to Cubs and then Scouts.




We completed our family with a  healthy baby girl, Isabelle.




Danny can now climb high.





He can abseil down a castle.

He  can play football in school.

He can swim for 50m (and getting further every time).



He can canoe, go rafting and sailing.




He has Gymnastic medals.

He can camp and start a fire.

He can hike for over 7 miles.

He can ride a two-wheeled bike.


  

He has flown in a light aeroplane.

He is a sixer at Cubs.

He is a  caring, proud big brother, with three even prouder little sisters.




He now holds my hand to help me balance and is the one teaching me to climb high.

He has half a heart but a full life.  

He will always have be on warfarin and other heart medication.  He continues to have check ups, regular blood tests and more surgeries.  He tires and needs a lot of rest.

He is an enthusiastic, inspiring, intelligent, interesting son, grandson, nephew, great grandson, pupil and friend to many.




This is my child, this is Danny.




This is my child, these are my children.

















8 comments:

  1. Tears in my eyes, Claire. What a remarkable boy xxx

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  2. wow what an amazing inspiring post i loved the story of your your sons life congratulations on raising such a beautiful child x

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  3. Can't quite remember my original comment which disappeared from the mobile (gggrrrr!) but it went something like: so pleased that you still have him, and he has made it so far because of all your love and support, and because you are an amazing, positive lady. Loved reading this post, could feel the emotion from you and you also got across how important it is not to give up, and to appreciate what you have x

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  4. Claire what an inspirational little boy you have. Such a lovely, emotional & uplifting post to read. xx

    Leanne - A Slice of My Life

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  5. What an amazing journey and story of hope. Thank you for joining #ThisIsMyChild I can relate to the heart surgery and waking through the night to feed a sleepy, weak baby. What an inspiration you are to others everywhere.

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  6. It is a privilege to read this blog. Thank you.

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Thank you for leaving a comment! :-) x

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