By Elle Armstrong
Fifty percent. July twenty-third. Twenty-four milliliters per hour. Quarter liter of oxygen. Two hundred and twenty-nine days.
Numbers have their way of creeping into the backgrounds of our lives and our memories. Of course, there’s the usual birthdays and telephone numbers, but never had numbers been so important in my life until I begun counting every day my son was alive.
50% of all babies diagnosed with Trisomy 18 pass away before they are born, but on July 23, 2014, my son — my sweet Noah Nicholas — decided that statistics weren’t for him. Other people’s statistics anyways. He wanted to make his own.
We became doctors, nurses, caregivers, and therapists over the course of a few weeks after he was born. We learned what a feeding pump was and how to use it. We learned how to adequately adjust his oxygen according to his O2 monitor. We were admitted to the hospital and made so many trips to the ER, I couldn’t begin to count them.
It was a whirlwind, but what a terribly difficult and wonderful ride it was.
On March 9, 2015, one door closed and I was left standing alone on the other side. My baby was finally healed and no longer in my arms.
I truly believe there is no darker place than when you are standing with that door closed in your face. You stare at it, waiting for it to open, waiting for this to change. You’re too scared to look around and see the world living on because you just can’t comprehend a world your baby isn’t in. All you can do is lay down, aching, deep into a place where you had never felt anything besides that pain– I think it’s your soul. You ache deep in your soul, and there is absolutely nothing to do to help that pain go away.
6/2015. Another month in another year that could have no meaning to you but to me marks the month I could finally begin to stand up and walk towards the next door. I discovered the inspiration to want to give back, to keep my son alive in the only way I had left, and that was through his memory.
I bought a camera shortly after Noah passed away. A choice I had already made the day before he passed was to learn photography. I contacted Rachel, the newborn photographer that had taken pictures for us when Noah was 4 months old. I asked for her to teach me; I wanted to learn what she did so I could give to other families. I didn’t want to make money. I wanted to find grieving families; families that had gone through or will go through a similar walk to my own. And in that discovery, I found what I finally needed to come alive and fully stand up, walking forward with only my son’s gift of fight in me and God’s grace pulling me forward.
I began to intern with Rachel, learning the ropes of photography, and not only did a beautiful friendship ensue, but an idea of hope was born. In December 2015 we began reaching out to our community, finding families that had lost a child and gifting them with a complete family portrait for the holidays. We had such an outpouring of support and interest in our project we decided to continue on with it every month and named it the Mara Hope Project. For the first time in my 27 years of life I knew what I was put in this very specific position in life for. We’ve met so many families, heard so many children’s stories and have been blessed with an opportunity to give so many individuals something they never thought they would have; a picture with every person in their family in it.
As human beings we have a natural desire to understand. We need to know why. We need to figure out how. And if we don’t understand these two questions, it’s almost incomprehensible to our human characteristics. I will never know exactly why Noah was plagued with an extra chromosome, why we were the lucky few who got months with our baby, what caused him to pass, and why all this happened to us. But what I do know is that my journey is my decision. Not what happens to me but what I do afterwards.
I have decided to live as Noah would, caring and loving. To give to others as if he was standing in my place and to keep moving forward to the best of my ability.
It’s been over 400 days since the last time I saw my son take a breath and it’s been over 780 days since mine was taken away with a fatal diagnosis for my unborn baby. Dates, days, hours, and minutes hold an important role in my life and in my memories. They help me to hold onto and celebrate my son and his fight. There are still moments, even days…weeks, where I want to run back to that door and knock on it, just to see if it opens. But I find as time moves forward it’s easier for me to turn around and walk back towards the open doors and away from the closed.
Elle Armstrong is a wife to Pete and a mommy to her two babies; her ‘Boo’ Audrey (6) and her ‘Moo’ Noah in heaven. She is a co-founder and project coordinator to the Mara Hope Project and has spread her wings into the photography industry. You can follow her photography journey through her photography Facebook page A New Hope Photography or her website, You can find Noah’s story through his Facebook page, Noah Nicholas’ Journey with Trisomy 18.