Another New Year, here we are! We did it! Another year! It’s a tricky one, New Years. I feel like I want to pause, and I’m not really ready to roll forward into 2020.
Truth is – I’m scared about what this year will hold. Will 2020 be the year Mikaere dies? Will it be fraught with hospital admissions, and seizures and pain? Will it be the year we see a slow deterioration? Will it be the year I peer into his crib after the sat’s monitor has gone off, and he’s passed?
I’m in that space, the nervous and anxious anticipation of what I’ve been so brutally primed for. This fear, it holds me tight. I’m in a holding pattern, really. Waiting. It doesn’t matter how much I put on a brave face, or how grateful I am or how much I live in the present. One day my son will die and there is literally nothing I can do to stop it (bar fundraising, which feels like crossing my fingers and hoping – but I’m holding on to that hope, gripping it tightly in my hot little hands, scared to let go, hoping for a miracle).
Looking back at 2019:
Mikaere celebrated his third birthday this year, for which we’re grateful. His head holding has really come along, and he’s as cheeky as ever. He loves the drums and singing and company. Bubbles and banana yoghurt are wins, spaghetti bolognese and tummy time he does not love. He is very very chatty when happy. Mikaere is very wriggly and the king of 2 minute power naps. We also took Mikaere Ice Skating and he stayed a whole week on respite at hospice with his Grandparents.
Therapy still remains a huge part of his day to day, with 11 different regular sessions (Physio, OT, ABM, Yoga, Hydrotherapy/Splash, Vision, SALT, Portage Play Therapy, Osteo) and weekly visits to Small Steps + the Vision Sensory Playgroup. We hope to add hippotherapy in the new year!
He’s had 556 Seizures (and managed a whole 8 days seizure free!!), 228 vomits + has night nurses 3-4 nights a week. We’ve managed a whole year with NO hospital admissions (woohoo!) + only ONE A&E visit! He’s had over 400 therapy/medical appointments across 8 different centres with a combined team of 30 different professionals.
Fundraising wise we’ve had a great year. We raised over £40k for NKH Research in 2019 – bringing our all time total up to over £143k – a phenomenal amount that gives us hope. Thank you to everyone who donated, organised and attended our events and fundraisers. We love you!
It’s huge to know how many people have run marathons (or 12kms!) and cycled, and drank wine or painted art or had a drink or hosted a games night or bake sale or or or (I could go on).
Looking forward to 2020:
If I’m being truly hopeful, what I’d like is for Mikaere to be in a clinical trial for NKH Gene Replacement Therapy (please universe, line up all the dots and fast track it through. Please make it happen). And while that is what my heart is pleading for, a future with my son where he doesn’t suffer, I’m realistic enough to know that instead, I hope for happiness for Mikaere. For a year with less seizures, more development, and more joy. More happy smiles, more cuddles and more belly laughs. That he’ll become more mobile, and ever so slightly more independent.
We’ll see. Please be kind to us, 2020.
