Three years on from heart surgery - Dereham mum on the difficulties of parenting a child with a life-threatening illness

Picture: Vicki Cockerill

Picture: Vicki Cockerill - Credit: Archant

In her latest column Dereham resident VICKI COCKERILL discusses the difficulties of being a parent to a son who has a life-threatening illness...

I am a mother, like thousands even millions of others.

I am also a mother to a child with a CHD (congenital heart defect) which puts me in a somewhat more of an exclusive club.

A club that I didn't anticipate or ask to be a part of.

As much as I want to pretend that Elijah will have a 'normal' life, and that I can be a 'normal' mum to him, it doesn't work like that.

He now knows he is a bit different, that he must do things his friends don't.

I must assess the risk of illness at nursery, how many layers he has on and when to intervene and tell him to rest.

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I keep up to date with developments in research and new surgeries and what vaccines will benefit him.

We are staring down the barrel of another future surgery and I know that it may become difficult for Elijah.

He won't be able to do what his friends will be, drinking, smoking, piercings and tattoos all the normal rights of passage for teenagers.

I know we will have to fight for him to have some of the opportunities that he wants, like becoming a firefighter but it is something I am willing to do.

When you have a baby that has a life-threatening illness, one that will affect them for the rest of their lives I believe there is a period of grieving for the healthy baby you don't have.

You become angry and resentful at the fact that your child must go through this, that you as parents must find it in you to get through this too.

The blame game is played a lot, normally there is one person you aim the blame at the most; yourself.

Three years ago, when my son was just six months old we took him to London for open heart surgery.

We stayed in a hotel the night before and he was booked into theatre at 7am the next morning.

We woke up, I bathed and dressed him in pj's, slippers and a dressing gown and we went across the road into Great Ormond Street.

I had already signed the consent forms and the black pen was drawn on my son's chest.

We went into a room full of strangers that didn't know my son, but could be the ones that saved him, or killed him.

I held him as the gas was put over his face and they took him, a dead weight and put him onto the table.

His dummy handed back to me, I couldn't even kiss him goodbye in case I never saw him alive again.

Those five hours were spent overwhelmed with worry and conflicting emotions.

But, finally we got the call and he was out, it was a success.

Five days later we were home.

That was all in April 2015.

It is now April 2018 and we are currently planning Elijah's third heart anniversary the day the CHD community celebrate on the anniversary of their surgeries.

Elijah makes heart sweet bags up for his friends, and we make a heart cake for him to take into nursery. We decorate the house and he gets a red themed heart present.

It may be strange to think about why we celebrate this day with our three-year-old who is likely to have no recollection and wouldn't notice if we did or didn't do this.

For now, it is for us, a way of doing something good with the cards we were dealt.

We also get involved with Elijah's friends and spread awareness of CHD at the same time.

It is too show to Elijah how amazingly proud we are of what he has achieved in three years.

When we have bad days, chest infections keeping us house bound, hospital appointments, tests and surgeries these will be the memories we are thankful for creating.

This is why, we go to this effort, why we make him feel special because there will come a time in the future that things may not be so positive.

There will be a time where we are sending our child down to surgery once again and waiting for those five long hours wondering if he will come back up.

We all carry the scars of April 2015, but this why we say Happy Heart Day to our son the heart warrior.