This Mom Founded a COVID Support Group After Losing Her Daughter
After more than two years of the COVID-19 pandemic, the United States hit a grim and harrowing milestone: As of this month, more than one million Americans have died from the virus, which has become the third leading cause of death in the nation. It’s another marker that’s come with little commemoration or acknowledgement, an example of how the country at large is trying to move on from the pandemic and its realties, even as the virus continues to claim lives. But for those who have been directly impacted, there is no forgetting.
Amber Carter lost her 13-year-old daughter Anna, the first child to die from COVID-19 in Oklahoma, in July 2020. The Carters, a military family, have spent their days since then sharing Anna’s story and connecting with others navigating their own grief. Amber is a member of COVID Survivors for Change, a non-profit working to advocate for policies to prevent future pandemics and support survivors. She also founded the Anna Belle Carter Memorial Foundation and the Facebook support group Parents Who Have Lost a Child to Covid-19. “With a tragedy like this, if you don’t find some kind of meaningful purpose in their death, you could get really stuck,” she told ELLE.com. “It’s our way of keeping them alive.” Below, Amber shares, in her own words, what it was like to lose Anna so suddenly-and how she hopes the country changes in the wake of these tragedies.
It’s hard to describe Anna. Any time she walked into the room, everybody would be so excited to see her. She was just fun. She danced. She joked all the time. She really wanted to act. But she said if that didn’t pan out, she would have gone into the medical field, because she had scleroderma, an autoimmune disease that’s pretty rare for children.
In the winter of 2019, I remember hearing a little bit about some respiratory virus in China. Then next thing you know, it’s in Washington State, and it’s affecting all these elderly people. The kids and I got together and made some cloth face masks and sent a bunch to my mom who lives in New York and worked at a nursing home. My oldest daughter said, “I’m really concerned about Anna. What if she gets it? I’m worried that she’s going to die.” Looking back, we should have probably taken more care, because we didn’t really know what we were dealing with.
We don’t know where exactly we picked up COVID-19, but my theory is I probably got it somewhere like Walmart and brought it home. The week before July 4th, I didn’t feel well, so I went to urgent care. They told me I probably didn’t have COVID, but I did have a sinus infection, so they gave me some steroids and a Z-Pak and sent me home. Of course, taking steroids, I felt great the next day. Nobody else in the family was sick, so I didn’t think it was something contagious.
On Saturday, July 4th, we went over to our friends’ house and did some fireworks, just us and them. I’m not trying to make light of that; any interactions with people were being judged back then. But my husband was getting ready to leave for a year to go to Okinawa, and we wanted to see our friends. We exposed them all unknowingly.
Anna went to dance camp that following week, and on Tuesday, when my husband picked her up, she threw up at the gas station. She said she felt really sore and thought maybe she overdid it in class. She stayed home Wednesday and Thursday, but she was eating, drinking, playing on the computer, talking to her friends.
Then by Friday, she was getting lethargic. By dinnertime, she almost couldn’t walk, so we brought her to the hospital. All her vital signs were fine, but her body looked really blue, and she was really cold. They put a heating blanket on her and, at one point, a lady came in to start an IV, and Anna passed out. I started screaming for the doctor to come back in. They took her to another room, and I called my deacon from church, and I said, “Please get the priest down here. I think you have to give Anna her last rites.” I called my husband and said, “You need get down here. I think Anna is dying.” People from all over the emergency department were on their knees praying with me. My husband and I were just pleading with her to come back. Then they pronounced her gone.
They said to take our time, but I didn’t want to leave her there. That was the last time I ever kissed her face. I begged and asked if they could take the tubes out of her throat, so I could hug her, but they couldn’t, because they were going to send her to get an autopsy. I asked if I could have her things, and they said no, they had to go with her. My husband and I went home, and when the kids saw us out the window with our deacon, they knew.
The hospital called and told us Anna had COVID, and they were pretty sure that’s what happened to her body. They did X-rays, and it really damaged her lungs and just shut down her organs. The next day, my family got COVID tested and all of us, even my toddler, was positive. It’s really hard to grieve and have COVID, because when you’re having trouble breathing, you don’t know if it’s the grief or COVID. Our toddler also had a fever of 104 for days. We couldn’t break it, and I was so scared. We took him to the hospital, and the very same doctor who was trying to save Anna’s life sat and cried with us.
I never really asked God, Why our kid? Why us? Because, why not us? Our family is no more special than anybody else’s. I don’t want anybody’s kid to die. I don’t want anybody’s grandmother or dad or uncle or aunt to die. And they didn’t have to-at least the numbers didn’t have to be as high as they are now.
Afterwards, I just wanted to know that there was somebody else like me out there. In early 2021, I thought, I’m tired of looking. I want them to be able to find me, because if I was looking for support, they are too. I wanted to start this support group to give parents a place to say the awful things that are going through their heads.
Grieving my daughter is hands down the worst feeling I’ve ever had in my life, mentally, and I’ve gone through some serious mental turmoil throughout my years. But waking up every day with the realization that my kid is not here, and I will never see her again-no matter what age your child is, that’s a really hard pill to swallow.
I also just created a group for teens, which my 19-year-old daughter helps moderate. Ultimately, with a tragedy like this, if you don’t find some kind of meaningful purpose in their death, you could really get stuck. Besides these two Facebook support groups, my family also immediately started the process of making a non-profit for kids that have scleroderma and their siblings. We give scholarships directly to the children we award every year. Because we’re a military family, we fortunately have TRICARE, and Anna is buried at a national cemetery, so we didn’t have a whole lot to pay out of pocket. I have some amazing friends who created a GoFundMe, and it raised quite a bit of money, so we put that money toward the foundation. That’s where we’ve found our purpose.
I feel like, a lot of times, life is pretty black and white. There are gray areas sometimes, but protecting other people from COVID shouldn’t have been one of them. I’ve heard people tell me my daughter did not die of COVID, and that I’m crazy, because it was definitely her autoimmune disease that killed her, when in fact, her life expectancy was well over 80 years. But when you’re grieving, anger is such an easy place to go to. If you’re ever going to find peace after your loved one dies, you need to be able to forgive these people and move on.
This has even put space between me and my father’s side of the family. It’s definitely made things a little more awkward between us, because I know their feelings on the vaccination. I have no idea why it’s political; it blows my mind that people make it the way that it is.
Going forward, I want people to be prepared to deal with a medical crisis related to the long-term effects of COVID. I also want people to realize we need a COVID task force; we need support for kids who have lost their caregivers. We should also have a national memorial. We need something in the National Mall that says: “This happened to our country, and this cannot happen again.” These are people. They’re not numbers or statistics. Let their lives count for something.
This interview has been edited and condensed for clarity.
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