HIE, Our Story

April is HIE awareness month. It also holds the anniversary of my first encounter with this thing I could barely pronounce much less understand. Hypoxic Ischemic Encephalopathy. It took a while to learn to spell it and understand it. And even longer to embrace it.

HIE robbed me of the relaxed early parenting experience I surely deserved for number two child. It threw us into a whirlwind of hospitals and appointments, tube feeds and medication. There were so many questions about our girls future, and ours, and very few answers. “She might…. She probably won’t…” My girls’ brain injury was severe, so her prognosis wasn’t flash. But as much as the medical-ese wasn’t measurable, neither was her spirit. Once she began to escape the swelling of her brain her light started to shine. Even so, it was difficult to picture a future for her which was independent of me.

The awareness catch phrase is “Hope for HIE”. It is difficult to reconcile those two terms at times but last week I could. Hope is having a glimpse into the future and it looks bloody fantastic. I used to be scared to look ahead. So scared. Life was doable if I stayed in the moment.  HIE has such varied outcomes for kids that the picture of an older child wasn’t necessarily where my child was heading so the unknown possibilities were terrifying. Then a young bloke and his dad lifted my hope to that ethereal place somewhere in the rafters.

I shall refrain from using the “I” word for they are ordinary people like you and I and often the idea of being “an inspiration” weighs heavily. The promise I gained from them was wrapped in their ordinariness. They live life with all of it’s joys and disappointments and the many road blocks along the way. But they kept looking for ways to fulfilment…and still do. The dad is bravely listening to his (big) kid and letting him take the lead. This young man has some mad switching skills along with incredible know how and fierce determination…and a wicked sense of humour. He has made his own career with his dad (and the rest of his family)  cheering him along. The key to this young man’s light shining through? Assistive technology.

Obstacles tend to fall in your path if you need wheels to get around…sometimes literally. When you speaking voice is unclear that multiplies enormously. The assumption that having no voice means you have nothing to say, is unfortunately still common. An eye gaze communication device is helping dispel that myth for my girl.  Switch access options to things like household appliances and computers are taking that a whole lot further and give more choice and control than ever before. This young bloke and his dad reminded me that good, ordinary people are taking steps forward for us all. And aren’t they fabulous people to walk this path alongside…even from a distance.

The days of people like my child being locked in an institution are in the past (mostly). The time of people assuming she should have no choice in her education and only be suited to a “special” or being kept at home are waning. The day when she can work and play in any setting she chooses with the assumption she is more than competent to do so is coming…I hope. The technology to help her achieve that is here and improving all of the time. I place my hope in my kid. She will be the one to know what she wants and have the grit to get it. I remember what she said about Stephen Hawking in an assignment last year…..”he clever because his disability. It make him think differently.” When I see her life as a straight line with speed humps she will see the wiggles she needs to get around those suckers. Hope is her.

 

 

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HIE…an anniversary

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.