Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


A Decade with HIE: A Mother's Reflection

Today marks 10 years since we stepped out of the NICU after (at that point in time) the most rollercoaster 21 days of our lives and the story really started to unravel.


I wanted to write something really eloquent and profound but quite frankly I'm too tired today 🤣



Whatever stage you're at, its OK to have shitty days, its OK to be mad at the world, its OK to question why and know you'll never get any answers but you'll still ask anyway, its OK to dream of something else, its OK to accept less and be happy about it. Just allow yourself to find the joy, take the trip, leave the laundry and just snuggle, cuddle them to sleep until they are too big and give you dead legs - and then when they're that big just get in with them! Tell the people in your life who don't get it to do one and let the people who genuinely want to help play a role.

We hear a lot of 'miracle' children who 'beat the odds' - the only difference between those kids and the others is luck, and you know what - we might have the outcome that SO many dread - but dammit this kid is just awesome and despite all he goes through (and trust me when I say his drama bingo card is full!) he often surpasses all expectations and comes out the other side with no fussing and as cheeky and gorgeous as ever.

The biggest thing I've learned on this journey is gratitude, and faith that there are good people in this world to balance everything. I still can't believe we are still here after 10 years, and I am SO grateful for every second we get with him because I know how quickly that could be taken from us.

I have made some of the most profound friendships in my life because we share this journey - you know who you are - love you all millions x


"Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops
at all."
--Emily Dickinson

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