In October 1988, President Ronald Reagan declared October as National Pregnancy and Infant Loss Awareness Month saying:
“When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them.”
by Jana Kimmel
Baby loss, grief, heartbreak, and the NICU. These words pretty well encompass our last year. I hear myself speak and write them over and over. And lately I’ve realized, I’m ready for a new set of words. It’s not that I’m “over it”. I will never get over the death of my son, Carter. My sweet little 2 lb baby boy born at 25 weeks along with his twin brother, Cohen. You get over the death of your hamster or your stolen bike, you don’t get over living without your child. Even though he was only here long enough to steal our hearts and take a piece of us with him, he will always be a part of our family. I won’t move on, but I will move forward.
It’s been a long, hard year. We never imagined that in one year we could find out we were having twins, spend terrifying weeks on bedrest in and out of the hospital, meet our boys at 25 weeks, say goodbye to our Carter, and watch our surviving twin, Cohen, struggle for his life. Our dreams of raising twins were shattered as we changed our gift registry for the baby shower we hadn’t had and we asked a friend to take down the extra crib we had set up in what was to be the twins’ room. We had no idea the depth of pain that we would go through. The things that we have learned through our boys and this experience are amazing and I’m ready to move forward with those things.
This isn’t to say that we are done grieving or that we don’t need to grieve. Quite the opposite. We have spent a lot of time in tears, buried in our heartbreak. Picking out a headstone for your child is something no parent should ever have to do. I still hold my breath whenever a double stroller goes by, knowing that that should have been us. Losing a child is losing a piece of your heart along with your hopes and dreams for that child and your family. The pain that we feel is a reflection of the great importance and love we have for our children. Though they are gone physically, they will always be with us.
Grief is something individual to each person. There are definitely similarities between what parents go through – the anger that we will live a lifetime without our child, the heartbreak of not getting to introduce our little ones to their siblings, all the memories we know we are missing out on. I wish there were a handbook for how to walk this journey but there isn’t, and so we must each find our own way. Contrary to what your friends, family, and even strangers may tell you, I don’t think there is a right or a wrong way to grieve. We each need to do whatever brings us peace and comfort in an impossibly difficult situation. It may not happen right away. It comes with time, so be sure to allow yourself or your friend/family member the time to grieve. Each person should do what they feel best honors and remembers the life of their child. While we have been robbed of so many other choices for our children, we do get to decide what kind of a legacy we give them. There are many opportunities to bring good out of the hand we have been dealt. We weren’t guaranteed that either of our boys would live. We were given the grim statistics before they were even born of what their survival rates would be based on prematurity alone and not accounting for the other complications we were facing. Each moment with our boys is and was a gift. Of course I wish for a lifetime of moments with Carter that I will never have, but I am thankful for each of the moments I did have with him. The one chance I had to tell him how much I love him and to be his mom. The moments to study his perfect fingers and toes and to memorize his tiny face, feet and hands.
If I could look back at that mom so fresh in her grief, feeling like she doesn’t possibly have the strength to get out of bed, I would tell her that she will make it. I would wrap my arms around her and tell her that it sucks, and it’s not fair, and it’s incredibly hard, but that there is hope. When it feels like you can’t take one more step or that your heart will never heal, you can and it will. You will always have a scar, but with time, you will find yourself again. You may not be the same person, I know I’m not. My boys have shown me what strength and courage are. They have taught me perseverance in the midst of heartache. When something as precious as the life of a child has been taken, you learn what really matters. And so, here we are. Celebrating the life of our miracle preemie while finding new meanings for our lives on this earth to remember our angel. Those old words will always be a part of our lives, but we hope to incorporate some new ones as well. Words like remembering, hope, courage, and memories. And living our lives one day at a time, embracing each moment, and living the best that we can for our sons.
Mom to Carter & Cohen, born at 25 weeks
You can read more of our story at Keeping Up with the Kimmels.
If you are going through the loss of your child, you may be interested in these resources:
There are many, many pregnancy and infant loss groups out there, these are what I found the most helpful. Please let me know if I can help you find one!