On Paper, It’s So Much Worse…

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

I guess I’d describe myself as a kind of organised person (ok maybe not as organised as I’d like to be, but not doing too bad).

I love a list, I like to keep documents in order, and I work for a stationery company so it’s quite a good match that I like having things written down on paper.

Well, most things.

I guess the majority of people, at some point in their lives, have received bad news in the post.

It might have been your latest council tax bill, your overdraft statement, or notification that you have picked up a parking fine; seeing it in black and white is what makes it official, no matter how tempting it might be to hide it in amongst the mountains of junk mail that also come through the door.

The thing that I have found to be really difficult to digest though is seeing Heidi’s diagnosis in writing.

The first time I read “spastic quadriplegic cerebral palsy, severe global developmental delays, epilepsy, hearing impairments, visual impairments…gastrostomy, tracheostomy” it was like a punch to my stomach.

I kept reading it over and over, and each time felt more upset.

It was like a long list of things that were “wrong”, creating a big black cloud that was to hang above us.

I mean, with a list like that, there’s not much hope is there, right?

Wrong! There is so much hope. What the written list doesn’t demonstrate is that Heidi is now a very happy and (generally!) settled 4-year-old.

It doesn’t acknowledge that despite early struggles, she learned to smile at around 15 months old, and will now light up when she sees (yes sees, so that scuppers the visual impairment diagnosis) a familiar face or her favourite toy.

It doesn’t take in to account that she goes to school and is developing all of the time – sure, it’s not at the same level you’d see in other 4-year-olds, but that doesn’t mean it’s any less significant, in fact if anything I think we have learned to celebrate and enjoy every single achievement as we know how hard she has to work to reach them.

I can remember a consultant we met in NICU when Heidi was being cooled.

He was explaining about the brain scans that she would be having, and prepared us for the results – he said that our kiddies will do their own thing; what the results show on paper will not necessarily match up with how a child presents.

This was the biggest piece of advice we could have been given.

Of course, the “wait and see” is such a hard part of HIE, but it also means that there can always be hope.

So, my advice to you (if you want it that is!), is to yes, read the letter, then pop it in a file (preferably one with dividers to keep it in order J), and enjoy your child for what they are – the ups, the downs, and the mediocre bits.

They aren’t their diagnosis, they’re amazing kids, who are so much more than what’s written on the paper.



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