Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


You don't want to be me

You don’t want to be me.

And I get it. There was a time I didn’t want to be me either.




I was terrified that my baby girl wouldn’t “beat the odds” or “defy the doctors.”

I wanted to believe that she would “prove all those specialists wrong,” the ones who used terms like severely affected and cerebral palsy.

I didn’t want a child who had special needs. I wanted that baby it seemed everyone around me got. The one who learned to roll and crawl and walk.

I was terrified of the life of “affected.”

The life of therapies. And medications. And so many doctor appointments.

So I prayed and begged and sobbed more tears than I thought I ever could have. I got angry and jealous. Oh so jealous.

This wasn’t supposed to be my life. This wasn’t supposed to be how it went.

She wasn’t supposed to be “affected.”

But she is.




And the reality of it is more than I could ever imagine.

I think there is a reason why we have to wait and see. Because in the beginning, you aren’t ready to know. It would be too overwhelming.

But it isn’t what you think.

It isn’t full of anger and sorrow everyday. Yep. I have those days. But they don’t come as often as they used to.

It isn’t a life I hate and wish I could get out of.

It isn’t as scary as it seems.

It is a life of little victories here and setbacks there.

It is a tiring life.

But it is a life of joy. It is a life I want. It is a life that has purpose and meaning.

And not just for me. For her too.




It’s ok if you fear being me right now.

But it’s also not a bad life. Being affected isn’t a tragedy. It’s not a failure. It’s not the worst case scenario.

My child’s life has just as much value as anyone else’s. I wince for her, for me and for all kids like ours, when someone is so desperate to not be like us.

Because, in all honesty, it’s hurtful. It’s hurtful to be the person someone looks at and is so desperate not to become. It’s hurtful to love the child another parent is hopeful their own child won’t become.

It’s ok to hope for the best. We all do. But the best isn’t always unaffected.

My child is living her best life. She loves with all her heart. She has a BFF (several actually). She is happy and very loved.




Our family is thriving.

And this isn’t despite our outcome. It’s all of our best life and we embrace it.

Your life won’t be just like mine. No two journeys are ever alike.

But whatever happens, however your child is affected, just know it really will be ok.

Everyday you can choose hope. And you can hold onto that hope and nourish it. You feed it with those few quiet moments to yourself at the end of the day. With friendships you cultivate and grow. With love you never knew you could feel so strongly.

Everyday you and only you can make damn sure that hope never ends.



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