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


What I have learned: one year in

July 30th, 2016  | Family Stories  |  By NICOLETTE FRIEND


Faith is now 13 months old, and I wanted to put together some of “what we’ve learned” to share with you.

She’s currently admitted for the 7th time since our 2 month NICU stay, which has given me the time to get this together. Faith is pretty severely affected and will probably be my forever baby. But regardless of future outcomes we all start this journey with the same pain and fear. So I hope these thoughts encourage you.

There’s nothing like the alarm and rushing feet in the ICU to remind you that everything can change in a moment. For typical children, much more for our own, at any moment, everything can change.

This doesn’t take away my drive to fight to do everything I can to help Faith, but it reminds me not to get so caught up in the fight that I fail to cherish the moments I have.

When you carry the weight of HIE constantly it will get too heavy. You have to remember to lay it down sometimes, if only for a day, if only for a moment, lay it down. Let go. You will have to pick it back up and keep going, but you NEED to let go sometimes and just be.

I’m trying not to waste what I have mourning what could have been. And worrying does not take away tomorrow’s troubles. It takes away today’s peace.

Holding on to the pain only makes a difficult journey more difficult. The sorrow will always be there, just don’t keep it close.

There will be times grief will bang on your heart until it breaks it open, floods in and crushes you. But let the wave pass, stand up and keep going.

This past year I have learned deeper meanings for words I thought I understood.

Courage is not the ability to face terror without fear. Courage is the ability to be terrified but face your fears regardless.

Strength is not the ability to keep it together. Strength is the ability to lose it, to completely fall apart, but to pick up the broken pieces that are left and keep going.

Life is not the grand sum of days we will look back on. Life is now. Life is this. And it sucks sometimes. There are moments that are soul-crushingly painful. But life doesn’t have to be perfect to be wonderful. Life is now. Life is this moment.

Life is still in my warrior princess. And I will do my best to lay down my fears, lay down my pain, and enjoy the time I am blessed to have her.



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