Shared by Amie Lands
There isn’t a moment that I forget about her.
There isn’t a day that I am not fueled by her brief life.
I live my life for her, in honor of her, and with her spirit at the forefront of all that I do.
I carry her in my parenting of her siblings, in my appreciation for her dad, in my classroom as a teacher, and as an advocate for bereaved parents.
In everything that I do, I remember my daughter, the girl who made me a mom.
Incompatible with Life
“Incompatible with life”
With those words, life as I knew it ended. My heart shattered into a million pieces. The effect of losing her was felt instantly.
My world stopped spinning, yet from the fourth story of the hospital I could see the rest of the world carrying on with their day. It bewildered me. How could the sun rise this morning, on the day that my world turned so dark?
My daughter was living. She was breathing. As the doctor spoke those words to us, my baby was in the room right next to us, alive. All I could think was that I must be with her. If they were telling me she would die, then I was not wasting one second of her time in that room full of doctors. I only wanted to be with her.
The next three weeks were the longest and shortest whirlwind of my life. A time out of time.
Never Enough Time
Our daughter lived 33 days. 33 of the most heart-wrenching, soul-crushing, exhausting, scary, and best days of my life. Half of those days were spent in the hospital, and the remaining at George Mark Children’s House—a freestanding pediatric palliative care facility.
Once we were no longer in the hospital, our days with our daughter were limited. We were determined to fit a lifetime of love in her final days. My husband and I spent every moment doting on our sweet girl. Our time was full of hugs, snuggles, singing and walks, much like any other newborn baby. Our days, however, also included rounds and nurse visits every two hours for medications to keep her body comfortable.
As children tend to inspire, I began to see the world through the eyes of my daughter. Because her eyes were barely open, I explained everything I saw to her. I told her the colors of the birds, the trees, and the sunset, forcing me to see them better, too. We sat outside every day, watching nature, with the wind blowing through the trees and the critters fluttering around us. In the silence of the outdoors, I felt the enormity of the world around me. Holding my baby girl, knowing that she wouldn’t be here for long, I suddenly felt so small.
We had 12 days together at George Mark until she left this world, only 12 days to hold her and 12 days to love on her. That will never be enough time to fit a lifetime of snuggles, kisses, and memories.
Walking Through Quicksand
Returning home without our sweet girl felt like walking through quicksand. I was pulled under the darkest depths of despair. My feet were heavy to lift. My head was in constant pain from crying. The world had lost its color. I saw no reason to live.
Life was excruciating.
My thoughts were terrifying.
Anxiety was an elephant sitting on my chest.
I wondered what it had all been for.
Will it always hurt this much?
Would I ever feel joy again?
Do I want to live without my baby?
I couldn’t say those words aloud. I didn’t know how, and they didn’t feel safe. My loved ones did everything they could to support me, but they held their own griefs at the death of my daughter. She was their granddaughter, niece, cousin, etc.
I would lay in bed and stare out the window, trying to remember every detail of our time with our daughter. When my husband would rouse me from our room, I would move only to sit outside and watch the birds in the sky. I would spend hours not talking to anyone, only writing, and writing, and more writing.
I wasn’t writing anything in particular. Many days, I would be writing letters to Ruthie Lou, telling her all the things I wished I could have said. Other times, I would write notes to myself of things I didn’t want to forget: the texture of her hair, the smoothness of her skin, and how she smelled of Johnson’s Baby Wash. But mostly, I wrote ramblings of my broken heart, emotions that my brain couldn’t comprehend, and words I was too afraid to tell another person. When I wrote, I could make sense of the senseless. When I wrote, I started to feel hope in my heart.
I didn’t know it then, but I was healing. Writing was saving me.
As I wrote hundreds and hundreds of pages about my daughter, my feelings, and my new life, I was processing the devastating trauma of my daughter dying and the grief I was experiencing.
Of course, writing wasn’t my only saving grace. I was grateful to take 6 months off work, so I had the gift of time to tend to my heart. I spent time outside exercising: hiking, swimming, cycling, and walking. I read books written by other moms whose babies had died. Sometimes I would sit in the sunshine and smell the fresh air. I found therapy in arts and crafts—sewing, painting, and knitting. I listened to music all the time, even in the shower. And I went to counseling as often as possible, nearly every week.
But through every experience, my daughter was there. She was not there to hold, but her presence motivated me to keep going.
Every day that passed confirmed I had survived another day.
One day at a time, reluctantly, I kept getting out of bed.
The Price of Strength
“You’re so strong.”
It feels more like a judgement than a compliment. I don’t feel strong. I have never felt strong.
I didn’t feel like I had a choice.
But I did choose. I chose life.
It took some time to realize that despite devastating me beyond recognition, my daughter’s life changed me for the better. The person I am now resembles who I was before, but I prefer the woman I am now. I like the “me” who evolved from the sea of despair.
Life is easier when you know what really matters.
Love is my everything.
Life is much easier when love is the priority.
Now, when my husband and I make big decisions, we follow our heart.
My husband quit his intended career to pursue his dream job. He is now happier and more successful than I’ve seen in the 16 years I’ve been with him.
I view my career as a teacher through a different lens, with the understanding that every one of my students is someone’s beloved child. I also write books and do work that supports the bereaved community. This work is my passion.
Saying Ruthie Lou’s name, sharing her story, and creating in her honor has given my life a true purpose. In my healing, I have felt compelled to offer hope to other families. The fear of failure is always present, but it doesn’t stop us from following our heart.
A Grief Continued
The loss of my daughter is not an event that happened, it is something that continues to happen at every milestone as the years pass. I will never walk my daughter to her first day of kindergarten. It’s impossible for her grandparents to cheer at her first soccer game. There won’t be a first boyfriend, or school dance, or graduation. We will never move her into her college dorm. Her dad will never dance with her at her wedding. I will never hold her hand while she gives birth to my first grandbaby.
Our lives and innocence have been irreversibly changed. I miss my daughter more than words can explain. I wish she were here more than anything in the world.
My love for her knows no bounds.
So for her, I live.