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Happy New Year!

By 7th January 2018 No Comments

What a year, hey?

We saw 2017 in on the 5th floor of the children’s wing, looking out the window of paediatric intensive care step down unit. The London fireworks were going off along the skyline. We’d been told that hospice and end of life care was Kai’s best option, and I couldn’t possibly have imagined the year ahead. I was so full of fear, that the new year would be one of grief and suffering and goodbyes.

Instead we had a very different year. Still with the fear and suffering and the grief, but there was joy. And love, and happiness. I’ve said it before, but I really wish someone had said that despite that hard times there would still be love and joy and good times.

Thinking back, this year was full of firsts.

The first time Kai smiled (a milestone many nkh kids don’t get to). The first time we heard him laugh. The first time we were home for good. The first seizure cluster, the first a&e visit, the first round of therapies and appointments and the first time I had to advocate name bear loud. Our first NKH conference. The first set of fundraisers, the first time we spoke publicly to strangers. Kai’s first birthday.

There were many firsts. We survived, and I can’t even begin to explain how huge that feels for us. We made it through this year. We made it, all three of us, despite being told at the outset it wasn’t going to happen. Take that doom and gloom paediatric neurology consultants.

We love Kai. It’s ridiculous how much, and 2017 was all about love for him. Taking the little moments of snuggles and chatter. Intentionally stealing moments to love on him in his world instead of rushing through the day (you’d be surprised at the number of appointments where Kai is more an accessory rather than the star. He’s often talked over and about rather than to).

In our yearly review we worked out how many appointments and things we’ve had. It’s a doozy. Kai’s had over 47 hospital appointments, 9 A&E visits, saw 28 different consultants/therapists across 853 appointments across 4 different hospitals, has 4 support nurses who visit weekly, spent 11 days in intensive care, 51 days in hospice, had over 900 seizures and had over 9040 medication doses. We also raised over £49, 572.00 for Joseph’s Goal and NKH Research.

It was this year that we truly learnt what it was like to be special needs parents. It took us a while to find our feet, but we’re pretty confident now. Kai has the support of so many, which means that we can spend less time being his person admin/nurse/advocator and more time just being his parents.

We saw 2017 out at home, with our little baby boy nappy between us on the couch while we celebrated with champagne. It was perfect.

What a year. Here’s to an even better 2018. Happy New Year you guys x

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