Every Mom’s Worst Fear: When Your Child Dies

I remember when my first child was born. He slept in a bassinet on his back near my bed. It was free of pillows and blankets, just like the experts advised. Yet, I still felt the need to check on him with every sigh or sound he made. Fear seemed to consume me. What if his pajamas managed to tangle around him? Or what if he just forgot to breathe? It’s worse for some than others. Yet it seems that we all experience it. Are you one of the moms who would carefully feel for your sleeping child’s breath? Yeah, so am I. 

My first born made it through those fears of mine, but anxiety took on a level previously unknown to me when I delivered twins in 2013. My little guy was completely healthy. I still thank God every day for that. However, his sweet sister Audrey was born with several life-threatening birth defects. I knew having twins would be life-changing.

I had no idea how life-changing it would be to have a child who had to fight for her life. I didn’t have to quietly check to see if she was breathing. Her hospital monitors made sure that we all knew. They beeped anxiously at everyone with every abnormality of her vitals.

Audrey spent her first 6 months of life as a full-time NICU patient. I spent her first 6 months of life trying to still be a mom to her brothers and wife to my husband while pushing back my fears to fight along her side. It was a day of celebration for our family when we packed up what seemed like an apartment full of belongings with our baby girl for her first trip out into the big wide world. There was no big party at home, though. We still had to keep her healthy for return surgeries. We had limited visitors and even fewer adventures away from home. To say I felt alone is an understatement. I looked forward to every sibling interaction and smile. 

Eighty-five. That is the number of major and minor surgeries that Audrey had gone through prior to February 18, 2015. It has been nearly four years to the day since she passed away. Audrey was 18 months old. My worst fear had materialized. My child died.

Some days it’s still hard to say. This is the best way I can describe what a parent experiences when losing a child. A deep fog encircles you. Your family and friends are there in the fog. They are trying to talk to and comfort you, but the fog distorts those efforts.

The next day you attempt to get out of bed, only your body is heavy like stone. It takes every effort you have to swing one leg over the bed’s edge. Your foot finally touches the floor and pain shoots through it like shards of broken glass on every millimeter of exposed skin. Your heart is bleeding. You have to consciously tell your brain to pick up each foot to get to the shower. It doesn’t matter what temperature the water is. You just sit on the floor letting it rush over your body while it intermingles with your tears. 

This is grief at its freshest. Grief is when love is lost. The possibility of grief is the reason we have those seemingly irrational fears about our children. So, what do you do when grief is no longer a possibility, but a reality? What do you do when your child dies? You make a choice. You either choose to stay in the darkness of grief or to shine a light on that darkness.

How do you shine a light? Find {or make} the good in a bad situation?

My family chose to shine a light by creating Audrey’s Army, a 501(c)3 nonprofit organization to honor and remember our sweet girl. Audrey’s Army has a mission of helping medically fragile children and their families by providing hope, love, and normalcy while they are fighting through their medical journey. We do this by providing customized care packages containing IV accessible hospital gowns, pajamas, blankets, books, toys and more to our Hope Kids and families. We also fund medical research conducted by our daughter’s surgeon and his team to provide more humane and lasting treatment options for children born with the birth defect responsible for Audrey’s death, EA/TEF. 

You can let a tragic experience destroy you, or you can use that tragic experience to build up others. We are choosing to build up others, but need your help. Audrey’s Army operates strictly on volunteer hours and dollars. The number of medically fragile children we serve continues to grow.

We will be hosting a fundraising dinner at 6 pm on Friday, February 22nd at The Great Hall Banquet and Convention Center in Midland, MI. The night will consist of plated dinner, silent auction, live entertainment, and dancing. While there is no cost for tickets, we do require RSVP and will ask for donations. 

Visit www.audreysarmy.com to request tickets or to donate if you would like to support Audrey’s Army, but are unable to attend the event.

The Mid-Michigan Moms Blog team is honored to support this wonderful non-profit cause.