The “Hope for HIE” foundation has April 20th marked as a legacy…for children gone too soon. Have you heard of HIE? I hadn’t until…..I heard it from a neonatologist…in a small room…at The Royal Children’s Hospital…with a young nurse holding my hand. It is our girl’s diagnosis. Hypoxic Ischemic Encephalopathy. (This is why it has an acronym…so hard to spell!)
In a strange coincidence today is also the anniversary of our foray into this new world. It’s the girls birthday. The day is always a bit tricky….for me not her, as usual. I celebrate her life and her excitement and I grieve and contemplate “what ifs” and have scary moments, pictures and conversations pop into my head. It has been quite the rollercoaster and that is typical of HIE.
She is exactly who she is supposed to be. I firmly believe that. (Yes…there IS a but!) But…..if I could take away her pain and help her do more of what she wants to do then I would. So I can’t help thinking…why didn’t the medical team cool her? How did they not see what I plainly see now with my untrained eye? This pointless pin ball game of “what ifs” is ricocheting around in my head.
But I want today to be joyful. I want to be grateful so I shall shake this off….to Taylor Swift if I must! This extraordinary kid has brought so much to so many. She attracts amazing people to us. She teaches every day. She makes me laugh and cry and be silly and dance. She exudes love from every pore. And today she has moved into teenager-hood…..today she is 13! Crazy right!
Considering her early prognosis this alone is incredible. So today I think we can both celebrate our Missy Moo and honour little ones with HIE who grew their angel wings by looking for joy. Join in. Look for Autumn (or Spring) colour. See that bird flying past. Smile at a young person helping out. Marvel at a toddlers chatter. Breathe in fresh air. Take a photo. Surprise a friend. Share a coffee. Search out the joy…or make it…and tell me what you find. For in all of the craziness of a HIE diagnosis and the challenges it brings these little things really are what matters most. To my gorgeous teenager who reminds me of this….happy 13th birthday kiddo. Love you buckets.