Waiting. Watching. Hoping. Waiting some more. Watching. Waiting. Hoping.
That’s what this HIE journey is all about. And it’s what makes it so damn hard.
One day, you’re minding your own business enjoying your life with your head in the clouds, and the next minute your world, your hopes and your dreams are shattered by your child’s hypoxic ischemic encephalopathy brain injury.
Because every fiber of your being wants, no, NEEDS, to sprint – to find answers. Answers… all you want are answers.
“Will my child be OK? Will my child walk? Will my child talk? Will my child see? Does my child know who I am? Will my child have friends? Will my child go to school? Will my child get married?”
“Will my child live?”
The questions torment you and urge you to race toward the answers. And you’ll dig EVERYWHERE and ask EVERYONE for answers as fast and furiously as you can. Your tenacity will put professional researchers to shame.
Yet no matter how hard and how diligently you try to race toward the answers, the finish line is never in sight.
The drive to sprint towards answers is torturous for the first days, weeks and months post-injury. Torturous because you keep running for answers that aren’t there.
There. ARE. No. Definitive Answers… In the beginning.
Why?
Because MRI, MRA and CT images are nothing but snapshots in time and can’t predict long-term outcome. Some children with bad scans are less affected. Some children with good scans are more affected.
Because we don’t yet know how to completely harness brain plasticity to quickly or completely rewire the brain. Some problems resolve with intervention. Some don’t.
There are only two places in which you will find the answers to the questions that torment you: in time, and in your child.
Time is what makes HIE a marathon. It’s simultaneously our worst enemy and our best friend. It’s our worst enemy when we don’t have answers and that is pure torture. It’s our best friend when it gives us patience, strength, and hope.
All we want to know is that it will be OK. But OK means different things to different families. And your outcome will be different than someone else’s outcome, even if the HIE circumstances and injuries were similar.
While you’re searching, you WILL find many other things. You will become one of THE most dedicated medical students in the history of the world. You will find your voice and you will use it for your child. You will find strength that you had no idea you possessed. You will develop an entirely new sense of empathy.
You will discover a tribe of other parents who understand your journey, even though it’s different from theirs. You will find some of the most important friends you will ever have.
You will find joy in the little things. And you will find that the little things are really the big things. And this will fuel your soul for the long haul.
Because as much as we all want to sprint to the answers, HIE is a marathon.
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