January 31, 2001 – February 19, 2001

It’s not a day on the calendar that reminds me of my grief. The day is imprinted upon my DNA by the angle of the sun, the season, the feeling in the air on a February day. Even if I were never to lay eyes on a calendar again I would know it in my bones. This was the day my daughter went to heaven.

I don’t have any motivation right now.  Don’t ask me to rise up from my grief. I am glad for it. If I don’t grieve, I don’t remember. To forget is a failure as a mom. To forget is to say that I’d never loved. 

So even though remembering my daughter’s short life brings unbearable pain and to dark places that I’d rather not visit, if I don’t remember her life then I miss the opportunity to feel again how much I love her.

It’s hard to sort out the joy of her birth from the pain of what she went through and losing her.  It’s all tangled up in a knot that I’ll never be able to sort.

I am glad for the February snow. The thick blanket of cold indifference is a balm for my soul. The quiet and stillness calms my mind.  I don’t want to make phone calls or go to the grocery store or cook or be responsible for anything.  

I drag myself slowly from task to task and from place to place like a diver weighted down and walking on the bottom of the sea.  It’s muted and muffled down here.

The pain is not as acute and does not last as long as it did in the beginning. But grief still comes out of the blue in waves, knocking me off my feet and pulling me briefly under. 

My sweet daughter, Anneliese, was born on January 31, 2001.  She was 3 lbs, 5 oz. She had dark hair and auburn eyebrows. I don’t know what color her eyes were, I never saw them open.  She was perfect.  She was beautiful.

She lived in the NICU at Primary Children’s Hospital in Salt Lake City for 20 days.  She had a diaphragmatic hernia that was surgically repaired but her tiny lungs were not strong enough to recover.  

Every day her life hung in the balance.  She was baptized the night she was born because we thought she would die. I felt swept away by the medical tornado that surrounded her, my body and mind constantly frozen in fear.

There were the code blues, the chest tubes, the ECMO machine which breathed for her, and the constant care by the highly skilled nurses.  There was me, sitting  by her side watching her oxygen sats and heart rate, constantly asking the nurses if she was on schedule for her medicine.  

They had to paralyze her to keep her from fighting the breathing tube. She was undoubtably in pain so they gave her pain meds as well. I was terrified that the nurses would forget her pain meds.Terrified. Terror. How would it be to be paralyzed and unable to scream in pain and fear?  I kept track of everything. I was her mom, her nurse and a fierce mama elephant.

Children born with a diaphragmatic hernia can and do recover.  Some fully recover and live normal lives and some struggle for years undergoing countless surgeries.

We had moments of hope.  For days after her surgery she improved. They took out a chest tube. They decreased the ECMO amplitude. But for whatever reason she crashed one night and I knew it was time to let her go.  This teeny tiny angel had fought so hard.

She was beautiful and strong, my little girl.  I sat next to her and told her stories and sang and put my hand on her tiny head. My time next to her was limited since I had developed a blood clot during pregnancy and was in a wheelchair. I had to take breaks and keep up with my shots. I developed mastitis, further complicating things.

Every night I woke up around 1:00 am at the Ronald McDonald house where we stayed to pump the precious milk that I carefully marked with her name and a heart and stored in the freezer.

 I couldn’t hold her, she was too fragile. I didn’t hold her until the day she died. She died in my arms.

This remembering, this writing. It hurts. It hurts like nothing of this world. I haven’t gone here in years.  

She has been gone for 21 years. Twenty one.  She would be just starting her life as an adult.

This year has been especially hard.  I remember things, flashbacks, memories that I have buried.  Things that resemble the PTSD that I thought I’d conquered years ago.  They come back and bowl me over at unexpected moments.  The room where I stored my breast milk, where there were babies with visible and some, untreatable, birth defects.  I rarely saw parents in that room.  Where were the parents?

I remember how I put the side of her little isolet down so that I could gently reach around all the tubes to place my hand ever so gently on her tiny head. And I would sing and read to her when her vitals were steady.  Calling in the middle of each night to check on her, holding my breath.  The pattern of the couch where we held her when she died.  How the head of the NICU hugged me so tight when she died that I could barely breathe.  I couldn’t breathe.

Last year and the year before I was too afraid to look in the small purple box that contains “her” things.  This year I did.  It’s a slow and very special ritual to look at each picture, each item, one by one.

There are no belongings in my life that are more precious.  

There are the blankets that were wrapped around her when she died.  We keep them in gallon zip lock bags so when I take them out, 21 years later, they still have the hospital smell on them. They smell the same as the day we lost her. There is a tiny spot of blood on one from when they removed her pic line. 

These blankets, they touched her. I bury my face in them. They were wrapped around her.

There’s the tiny hand-knitted hat with pink hearts on it.  One of the very kind night nurses put it on her one night and took polaroids of her for us.  She put the pictures in 2 valentine’s day cards, one for Anneliese’s Daddy and one for Anneliese’s Mommy.  She put her handprints and footprints on the cards and signed them “love, your daughter, Anneliese xoxo.” 

I read each card sent to us by friends and family. I cry, no, I sob.  My heart is empty and broken, my heart is full. My soul is missing a piece that it will never find.

This year, for some reason, I looked inside that tiny knitted hat. Inside, there is a dark hair. My world spun sideways. She was here, she was here on this earth. I remember.  

I miss you my tiny, tiny angel.  I miss you so much.  I often wonder what you would be like.  I try to picture you.  I see you laughing with the sun on your face.  I see you running barefoot through the grass.  At 2, at 10, at 21.  

I imagine your voice on the phone when you call me to tell me that you met a boy, that you interviewed for a job, that you saw the best movie.  And I would ask if you had Junior Mints or popcorn.  (Your brother and sister like Twizzlers and Swedish Fish.)

I imagine the ways you would fight with and also fiercely love your siblings.  It would have been heaven to have raised three rowdy children.

Tomorrow is your heaven day.  I know you would not want me to be sad.  So I will go out in the snow, in the quiet and spread bird seed for the chickadees in the forest.  I will tie a red ribbon on the tree that we’ve lit a candle under for the last 21 years.  

I will breathe in the crisp February air and feel the sun on my face for the both of us.  Your brief life changed my world and I am forever grateful for that.  I love you with all my heart.



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