For the last couple of weeks we have been looking around primary schools for Elijah who is due to
commence school in September 2019.
I have found the whole process very conflicting, especially as a heart mum.
I know, that he is ready, more than ready to start school, I however am not.
We decided early on that Elijah would go to nursery, as we found a good fit and they took the time to
get to know all about Elijah’s condition and took the time to understand me too.
I am over protective, but who wouldn’t be? Elijah’s keyworkers have always been patient with me, even
when I am banging on about keeping an eye on the cough he has, or making sure he wears his coat
when it is cold.
For four years now, we have been happy in the setting, he has built up an immunity with only a few
illnesses including the dreaded chicken pox, and we have a bond with the staff and management there.
It was hard letting go to begin with, especially as surgery was still quite a fresh experience in our minds.
To hand him over to someone and put my trust in them was a steep learning curve for me, and despite
them probably telling you I have been a nightmare I feel safe knowing he is there.
That will change and I once again am going to learn to put my trust into a new environment, new staff
and I am struggling with the fears and worries I have about him starting school.
It is the fear of the unknown, I have the consultant’s words ringing in my ears that Elijah might not be
the quickest in the class when it comes to physical education but he might not be the slowest.
We up until now have been so lucky that Elijah has kept up with everyone, there has never once been an
issue of him being lethargic, or struggling.
But two days, to five days will the new routine tire him out more than most?
Will he be okay in his new environment and the new volume of children he will be interacting with?
I am very involved in his care now at nursery, but I understand I will need to step back and I worry will
the staff pick up on if he is tired, or needs to limit himself, will they make sure he has his coat on when it
is cold or that he has eaten his lunch?
Will this be the turning point, where we realise that he is a bit different from others?
We of course will have meetings with the school, and staff will be briefed about his condition but it is
such a change, it makes me nervous.
From talking to friends I know that it is very different having a child at school and it does give me a knot
in my stomach.
I want the world for him, I want him to thrive and achieve everything he possibly wants to and he knows
he has a ‘special heart’, but if we are honest currently he is no different to his peers, will he realise that
perhaps now he is?
If he gets ill I will keep him at home to rest, to fight it will he miss out? Will others ask questions when
we attend hospital appointments? Will he miss out on attendance awards when his friends do and feel
This is all hypothetically and do you know what, he will like everything probably surprise me and be
absolutely fine but I believe this is the fear of a heart parent.
It will always be there, and for any parent it is hard when your child starts school but when you are a
heart parent it feels so much more intensified.
Take his lead
Looking down at him as we looked around the school going ahead, getting excited at seeing a character
he recognised I know I will need to take his lead.
My little heart warrior is ready for the next chapter, and I know he will be amazing and I just need to
learn to once again put my trust in him, and the school.
Being a heart parent you spend your time wanting your child to be like everyone else, whilst at the same
time wanting to wrap them up and never let them go.
I never want to hold him back because of my worries, and my fears but the change from him being with
me most of the time at home to being at school for five days a week is one I am going to have to adapt
Being a parent is hard, but when your child has something like a heart condition in makes these
milestones that little bit more bittersweet.
Vicki Cockerill is a Freelance Content Writer and NICU/CHD mum to two boys. She authors The Honest Confessions Of A NICU Mum Blog, founded and runs The NICU Parent Partnership Organisation, co-founded the @KnackeredandNorwich Social Club and campaigns for NICU and MMH issues. You can contact her via her blog or social media;