Monday, August 1, 2016

The Irrelevance of Normalcy

Normalcy. What does it mean to you?

For me, normalcy is loving a child I could lose. Normalcy is living out of an ICU for nearly 8 months.

Though the challenges Sean and I have faced are not comparable to those Avelyn has overcome, our road has not been easy. Our baby has been hospitalized for 228 days.

228 days. 
Think about that for a moment.

She was born at 275 days gestation. By the time she's discharged from the hospital, she will have spent more time in the ICU than she did in utero. That's a long time. And though we are blessed to still have our baby, each and every day has taken its toll on us as parents, people, and a couple.

Having a hospitalized child is exhausting--physically, spiritually, emotionally, and intellectually. To have a critically ill and chronically hospitalized child goes beyond that.

In the beginning you’re naive and don’t understand what’s going on around you or how the ICU operates. Things are a blur and everyone you know calls, texts, or tries to visit constantly.

At first you reach out, you get to know the other families and children on the unit. Then you learn what the overhead alarms mean and your stomach drops with each and every one. You know what it is like to be the family who’s baby is coding. You know there’s nothing you can do or say to make it better but pray and try anyway.

Time continues to pass. The calls and texts become fewer and the visits shorter and/or less frequent. The months add up, the exhaustion builds, and you learn the interworking’s of the unit.

You quit reaching out so much because it’s just too damn hard. You’re still grieving for the lost little loves and their families from the early days. But that doesn’t mean you don't notice when a room empties too soon. Each child lost, whether you know their name or not, takes its toll on you as a parent and a person. On those unbearable days, it’s all just too real. You hold your precious little one close, not knowing why she’s still here and so many just as strong, just as deserving aren’t. You continue to pray earnestly and fervently for her to be spared and to see her grow-- because you know, beyond a shadow of a doubt, that life is precious and nothing is guaranteed.

More days go by. The world around you goes on, but yours doesn’t. Yours is still behind locked doors and within the eyes of a baby giving her all. You spend your days trying to parent around medical interventions, assessments, alarms, illness, lines, chords, pain, withdrawals, strangers, and countless other distractions and interferences—because she deserves as much of a babyhood as you can provide.

On the good days you rock and soothe your baby with hopes of easing the discomfort and pain. On others you can barely find an open bit of skin free from chords, lines, or dressings to stroke or pat. On the worst days you can only hope your child doesn't feel excruciating pain—though in desperation you pray that they feel love you're emitting from your very being, because god knows you can’t do nothing.

Still, time goes on. Calls, texts, and visits are rare. Confusion and anger start to seep in as people you love go about their lives. You see more rooms empty too soon and each one hits home.

Eventually you get to a point where you're too exhausted to care much about social convention or other people's feelings. Because in their world, children are smiling, healthy and pain free--whereas in yours, children fight for their lives and all too often die.

You just want them to know that your world exists and to care about those who’ve been lost but you’re so exhausted it all comes out wrong.

Time wears on. You feel your world closing in. But then she studies your face and she smiles. It's such a simple gesture for any other baby, but you know it’s so much more given all she’s been through. 
She is still here. Still fighting. She carries the torch for all who’ve been lost. Your heart overflows and you’re reinvigorated, ready to take on tomorrow.

With each passing day it becomes more clear that normalcy itself is overrated, if not completely irrelevant. 

So you  rise, ready to meet each day because in your heart, you know she, and all the beautiful children like her, are worthy of the world and our fight to provide them life.

Bring on the next 228 days.


  1. Prayers for a beautiful family. God Bless.

  2. Oh Somer, you are an amazing person, wife and mother. You, Sean, and little Avie have been through so very much that we can't begin to understand, but the least we can do is to TRY to understand, to care, to pray. Thank you for your honest transparency and for keeping us informed. I'm asking God today to lift you up and give you an extra measure of strength and hope.