By Nicole Keesecker Plourde
This post made possible by the generous support of CatBird Baby Carriers.
Note from the editor: When Nicole and Beth shared the story of Mighty Gabriel with us we knew it was a story we wanted to help share. When they talked about how they walked with their friends through their grief, we knew the lessons they learned were ones we wanted to pass on. Mourning the loss of a child is difficult beyond words, being the friend of someone going through such pain often feels like a hopeless situation. These practical suggestions for how to love and support someone we care for in the midst of the greatest pain of their lives won’t eliminate their suffering but it can help them know they are not alone. If you are grieving the loss of a child, please know that we are here for you, TLB and the wonderful moms running CatBird Baby are ready to support and care for you, our hearts ache for you with the loss you have endured. You are not alone. ~Jessica
Being the friend of someone who is grieving the loss of a child, be it through pregnancy loss or after their child was born, can be an overwhelming position to be in. How do we care? How do we support? How in the world do we appropriately honor their grief without causing them more pain? Is that even possible? While I don’t have all the answers and I’m learning myself, I wanted to share these 5 points with you:
- Be there. No really, show up. With food or a mop to clean their bathroom, whatever it is, they’ve already lost so much, they shouldn’t lose friends too.
- Stick around. Our lives are busy and our attention spans short. We will move on to the next thing—they will not. Continue to reach out to your friend even after the initial event has passed. Grief never really stops; it is carried. They will need you three months from now, three years from now and three decades from now.
- Say their child’s name. Mentioning their loved one will not make your friend more sad than they already feel. That’s not possible. It tells them that their child has not been forgotten.
- Follow their lead. Some days will be better than others. The grief is theirs and not yours. Let them do things their way and be there to support them.
- Blanket them with your love. Listen and be honest. Hug more and talk less (I need to work on this one). Then love some more.
I wish I didn’t have to write any of this, but I do. Gabriel taught me that walking through the forest of grief is never something any of us should have to do alone. Here is his story.
Mighty Gabriel’s Forest
October is National Pregnancy and Infant Loss Awareness Month, and this year tragedy hit a little too close to home. The Catbird Baby carrier I gifted to my friends and fellow parents would never be used. Their beautiful baby boy, Gabriel Anthony Allen, was born on June 24, 2015 and passed peacefully in their arms just 64 days later. No parent should have to go through what they have. And at Catbird Baby we want to honor baby Gabriel and bring awareness to the disease that took him from us. We want to share his family’s story to bring people together, to find a cure, to let everyone who has lost a child know that they are not alone.
Gabriel had Spinal Muscular Atrophy (SMA). Even his mother, a family physician, hadn’t heard of it. SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA is an autosomal recessive genetic disorder. This means that, generally, both parents must pass on a faulty gene for the child to have SMA. There are four different types of SMA. SMA type I—the kind Gabriel had—is the most severe and also the most common. Babies with type I usually face greater physical challenges than individuals with other types of SMA. The expected lifespan of a child with SMA type I can vary dramatically based on many factors.
There were no warning signs. An induced, unmedicated birth followed a healthy and happy pregnancy. Gabriel had good APGAR scores and passed all of the screening tests. He nursed like a pro just minutes after birth. Then the nurses noticed that he was a little “floppy.” Low muscle tone in very young infants is often the first sign of SMA type 1. He stayed in the hospital for observation and more tests. Everything came back normal. They took Gabriel home.
They enjoyed time together as a family. Big sister, Eleanor, jockeyed for space on her mama’s lap and at the breast. Although a bit tricky at times, everyone got what they needed. All was right with the world.
Then one day he had an episode of blue lips while nursing and that night he was struggling with his latch. After a visit to the doctor everything seemed okay. But, a few days later, Gabriel was working hard to breathe and his whole face turned gray. A trip to the ER, followed by helicopter ride to the Children’s Hospital ended with a stay in the PICU. After a couple days he was too tired to nurse. He wouldn’t even take a bottle nipple. He needed help breathing, so his mama started pumping day and night so that he could receive her nourishment from a feeding tube.
At four weeks old Gabriel was diagnosed with SMA. As his respiratory system as struggling, his brain was developing. He wanted to play, like any other baby. He was fussy and hated to poop, just like any other baby. He was loved and adored, just like any other baby. There were no easy choices. Life at the hospital was hard. A plan was made to care for Gabriel at home.
After 30 days in the hospital, the family reunited at home. Gabriel’s bedroom windows faced the woods. They sang, played music and read books. They spent time outside when they could. His sister enjoyed singing “Twinkle, Twinkle.”
They had been home from the hospital for two weeks. Gabriel’s breathing became more shallow. After a clear, warm and sunny spent in the woods, Gabriel died in his parents’ arms.
Gabriel’s short life has meaning. Gabriel taught everyone in his corner of the universe how to love deeply, and to live in the moment. We will hold our children closer, and speak of love and life. His mama donated a cooler full of breastmilk to a local mom, sharing the milk her body made for him with another baby in need, a healing move for more than just one.
And, it just so happened, that one of Catbird Baby’s new mei tai prints featured a forest—just like the one outside Gabriel’s window—filled with deer, rabbits and foxes. We knew. It was mighty Gabriel’s forest.
He never grew up to run and explore the wonderland outside his window or learn to skip rocks alongside his sister. But we know that his spirit lives on in the whisper of the wind, the rustling of the leaves, in the playfulness and purposefulness that is nature.
A portion of all CatBird Baby Mighty Gabriel’s Forest mei tai sales will go to cureSMA, an organization that funds research for the treatment of and cure for SMA. To honor Gabriel, the little guy who never got to go in his own carrier, the CatBird family is walking through the forest of grief with our friends and hoping to inspire others to do the same.
Help us spread the word, find a cure and stand with our friends and loved ones who grieve the loss of a child. Nobody should walk the forest of grief alone and we hope that together not only can we support each other, we can also help find effective treatment and cure for future little ones with SMA. For Gabriel.
To learn more about SMA visit cureSMA.org.
To learn more about Mighty Gabriel and his story visit here.
To learn more about surviving child loss and infertility visit this site.