Guest Submission by Amy Wadsworth Register:
I was having a great day. I had attended an event with the Chamber of Commerce and sat with two friends. We had shared stories about rush (because it was that time of year) and then Auburn’s Athletic Director, Allen Greene, did the program. It was warm, but I had on cute clothes. I had a deposit to make for the Foundation. I went to the bank and conversed with the ladies there. I got in my car, and the phone rang. It was my friend and board member, Kelly. I said, “Good morning.” She responded, “Wyatt died.”
My world stopped.
Let me back up a little bit. In 2017, I worked as a Marketing Consultant for an HVAC company. Justin Quinn, the owner of Sensigreen, had become a close friend, and one day he asked if he had ever told me about his daughter almost dying. She had been diagnosed with Congenital Diaphragmatic Hernia (CDH) before she was born. This birth defect is as prevalent as Cystic Fibrosis and Spina Bifida, but still kills 50 percent of the children born with it. In 2007 when Lily was born, the survival rate was not as high. His family had received generosity from all sorts of sources during her early days, and he wanted to start a foundation to give back some of what he received. Would I help him start? Sure….
So a year and a half into this journey of working with families who get this devastating diagnosis, we had met so many families in Alabama and around the country who brought home babies that might have challenges, but they were going to thrive against all odds. We had met with one of the most renowned CDH surgeons in the world. We had set up programs to help families find care. We had connected families to each other to share joys and setbacks. It was the year 2018 and our babies, the ones we prayed for, the ones whose parents I fell in love with, the babies being treated at the most decorated medical facilities in the world were not going to die. They were not going to die because I had willed it to be.
Then precious Wyatt did die….and my heart shattered into a million pieces. My grief could not even scratch the surface of what his parents experienced. Wyatt’s twin sister, Fiona, was doing well in NICU despite being born at 28 weeks. Their precious parents were facing the absolute best and worst that life had to offer at the exact same time, and it was my job to try to support them the best way I could. I felt guilty. How could I show them how much I grieved for them when they could hop on Facebook and see the bright and smiling faces of the little boys I was never supposed to bring home? How could I get mad at my boys when they threw Cheetos at each other…..because I was lucky they could throw Cheetos at each other? Was I going to say the wrong thing? Did they need food? After all, I am Methodist-born who became an Episcopal woman from Alabama, and my first instinct is to get food to grieving folks. Mushroom soup mixed with chicken and Ritz crackers is supposed to cure everything, right?!?!?!
I have talked a lot about my reaction to the death of a baby that lived for 30 hours. Wyatt’s 30 hours on earth mattered so much for so many reasons, but the reason I am talking about how I reacted to it is because those of us with typically healthy children are going to face tragedy one day. Our hearts are going to break for a little while, and the memory will stay with us, but we are going to want to support the parents we love during the absolute worst of their days, and yet we are going to question the moves we make. I want to tell you that showing up and potentially saying the wrong thing is better than backing away. Being there and saying nothing, is better than trying to fill the void of silence with the wrong words. Saying the name of your friend’s child who died, means the world to every grieving parent I have spoken to. Your loved one is always thinking of their baby, knowing you are thinking about them brings comfort from what I have been told. If you don’t know what to say, say “I don’t know what to say.” Ask the question, “How can I support you right now?” Remember them on their child’s birthday. Remember them at the holidays.
I connected with a CDH mom in Michigan through the Today Show’s Facebook page. She and I correspond regularly. Her Brittany died about 30 years ago. Tammy, my friend, is the picture of strength and is so gracious in sharing her journey with me. She said that her family and friends have created beautiful traditions to remember Brittany, and she told me to share them with you.
Tammy says, “You are spot on about just showing up. Sometimes we just need someone to sit and listen. Sometimes the parents don’t bring it up because we don’t want to make others feel uncomfortable. If a friend brings up our baby somehow, it makes it okay for us to talk about them. Sometimes you just need a hug or to cry. A meal, a random card in the mail. You never need someone to tell you that there must have been a reason for this to happen, or that you will get over it, you don’t. You just learn to cope. We need our friends and family to be our safe place. Remembering our children on their birthdays and holidays is huge! My sister and my niece get me an angel every year for Christmas. I love it, they remember! And when I look at them it makes me smile knowing that someone else loved Brittany too. I have family members and friends that remember Brittany’s birthday. My other children that never knew their sister remember her birthday, and if I don’t see them that day they call or text ‘Love you, Momma.’ Her birthday is Halloween, so now I Trick or Treat with my grandchildren, it helps.”
I ask myself each day why we got lucky, when so many other parents go through unspeakable heartbreak. It is definitely on my list of questions for Jesus one day. Humans are not good at grief and it is completely understandable why. When trying to decide how to support a grieving parent, just showing up is the first step.
Amy Wadsworth Register is the Executive Director of the Sensigreen CDH Foundation. The Sensigreen CDH Foundation supports Alabama families that receive a congenital diaphragmatic hernia (CDH) diagnosis. In 2019, the foundation will launch NICUnited, a support program for fathers who have or have had children in a neonatal intensive care unit. Amy and her husband, John, live in Auburn and are raising sons Kyler and Langford. For more information on CDH and the programs of the Sensigreen CDH Foundation, please visit www.sensigreencdh.org.
