Little Holes in My Heart

Joey Feek died yesterday. If you don’t know who Joey Feek is, maybe now isn’t the time to find out, because her story will break your heart. In a way, I wish I didn’t know who she was, because it breaks my heart.

Joey was a Christian-country star—half of the duo Joey+Rory, along with her husband. I don’t listen to much country music these days (except for George Strait, who will always hold a place in my music-loving heart), and I don’t listen to Christian music, either. So musically, I had no idea who she or her husband was.

Until they had a child with Down syndrome two years ago—their daughter, Indiana. Like Sam, she had a birth diagnosis. And like me and Chris, Joey and Rory seemed to react first with surprise, but quickly with nothing but love for their child. I liked that about them.

Four months after their daughter was born, Joey was diagnosed with cervical cancer. The thing about the Down syndrome community is, once you’re in, you’re in. So we all knew who Joey was because of Indiana, and when we heard she was diagnosed with cancer, we felt profoundly sad. She was a fellow DS mom—this wasn’t supposed to happen to her!

But her diagnosis was good. Her husband, Rory, had been keeping a blog (This Life I Live) for a while, and after they had their daughter and Joey’s diagnosis, many of us in the DS community began following it. Rory, as it turns out, is a beautiful writer, and his tributes to his wife and his words about his daughter were touching and lovely. And after Joey’s first surgery, Rory wrote that there were no signs of cancer left, and she didn’t even have to have chemo or radiation. Wonderful!

Except it wasn’t. A year later, Joey’s cancer returned. It was treated aggressively, but before long it became apparent that it was terminal. And so many of us in the DS community have followed Rory’s blog as Joey’s health has declined and she has lived out the last days of her life in the way she wanted to—in her home state of Indiana, with her family by her side.

It’s been hard to follow. Rory’s blog hasn’t wandered into the morose or maudlin; rather, it’s been simple writings about his wife and daughter in the final stages of Joey’s life. And its simplicity is partly what has made it so very poignant.

That and the fact of little two-year-old Indiana, who will never know her mother except through memories, pictures, and video.

It’s a funny thing that happens when you have a child with lifelong special needs: a fierce protectiveness comes out that is unlike any you might’ve had before. I think all mothers feel protective of their children—it’s nature, and it’s built into us. But I know that when I had Sam and he was diagnosed, an immense wave of protectiveness washed over me, unlike anything I had ever felt before, even though I already had a child. One of the first thoughts that went through my head was, “I have brought this child into what is often a cruel world. I have to protect him.” And that doesn’t mean putting him in a bubble, but it does mean being here to stand up for him when he can’t do it himself. Theo needs me too, make no mistake. But Theo is growing up with skills that are valued in our world—traditional intelligence, savvy, and independence. Sam is growing up with different skills that are sometimes harder for the outside world to see as valuable. I’ll always be here for Theo, but I know there will be a time when he no longer needs me. I’m not sure the same will be true for Sam, and that has made me fiercely protective of him and determined to live as long as I can to be here to back him up.

And, selfishly, I just want to see my boys grow up. Of course…like any parent does.

But Joey Feek didn’t get that chance. She did live to see her daughter’s second birthday, which Rory wrote was months longer than the doctors expected her to live. But two years does not make a life, and there is so much Indiana will do that Joey will never get to experience with her. It’s heartbreaking.

The whole situation brings to mind another mother I had the luck to know: Elizabeth. She helped me out when Sam was a newborn and having trouble nursing. When feeding was difficult, I reached out to a friend of mine who was a La Leche League leader and successful at nursing all five of her babies. I also knew she had an interest in children with Down syndrome, and I thought she might be able to help. Indeed she was—she hooked me up with two friends of hers, and one was Elizabeth. Via email, Elizabeth walked me through ideas to help Sam practice nursing while his little mouth got strong enough to be able to rely on it as his sole source of nutrition. Partway through, I learned that Elizabeth was actually writing to me from the hospital, while undergoing chemotherapy! When I protested and said she obviously had other things to take care of, she virtually waved me away and said, “Nonsense; I need to do something while I’m in here.”

Elizabeth had five children, and her youngest two have cerebral palsy and a complex metabolic disorder (the penultimate) and Down syndrome (the youngest). She passed away about a year ago, when her youngest was only five. I sobbed when I read the news, for the same reason I cried when Joey Feek died—as the mother of a child with Down syndrome, I feel an incredibly kinship with these women, and I grieve that they were unable to live to watch their precious children grow up. Will five-year-old George remember his amazing mother, Elizabeth? I don’t know. If I died today, would four-year-old Sam remember me? I don’t really think so. He might have vague memories of a woman keeping his bowl of goldfish crackers full and getting him out of his crib every morning with a greeting of “Did you have a good sleep?” but that’s probably about it. The memory of a four-year-old is fickle at best, and the long-term memory of a two-year-old, like Indiana, is pretty much nonexistent.

Both Elizabeth and Joey reportedly fought hard for as much time with their precious children as they could get, and I can so fully understand that! There’s a certain respect we have for people who choose to end treatment with dignity and let nature take its course, and I understand that. But as the mother of two young children, I can also understand the need to fight for every last breath possible, just to drink in as much of your children as you can before there is no more. Elizabeth battled cancer for several years before succumbing, and Joey fought hard to get months longer than the doctors expected. I’m pretty sure in their place, I would do the same.

Mortality has been on my mind a lot in 2016. There has been a lot of illness and death around. Two of Sam’s buddies from the Rockin’ Moms group are undergoing chemotherapy as they fight leukemia. Another one of his buddies from the group has to have yet another heart surgery. Still another one is on watch because the hospital where she had her heart surgeries used a machine on her that has now been found to have caused the death of several people, due to being contaminated by some sort of bacteria. Several Rockin’ Kids have been hospitalized for dehydration, just as Sam was. Several more have been hospitalized for RSV. Another Rockin’ Mom abruptly lost her teenage son in a tragic accident. The fragility of life is evident everywhere these days, each instance poking little holes in my heart.

But what I take away from all of this, in addition to a gratitude for my own health, is a need for kindness. There is a quote I’ve always liked: “Be kind, for everyone you meet is fighting a hard battle.” Right after Joey Feek died, my Facebook News Feed was filled with messages of tribute, which was lovely and touching. Until I read one comment about how she “could’ve avoided this” if she hadn’t been into natural living. The commenter claimed that Joey didn’t start chemo soon enough, and if she had, she’d be alive today.

Whether that’s true or not (it doesn’t seem to be, based on what I’ve read in Rory’s blog, but I really have no idea), I thought it was in poor taste to bring that up. Whatever choices she made, I’m quite sure that as the mother of a young child, she wasn’t playing recklessly with her health. And even if she was, it seems in poor taste to bring that up in a tribute post about her passing.

It reminds me of some weeks ago, when Supreme Court Justice Scalia died. Social media was full of posts about his death, and some of them were basically jubilant cheering that finally the old codger was dead. I felt sick to my stomach reading them. Justice Scalia’s politics were not much at all like mine, and I have no doubt that if I went through his judicial record, there would be a lot I would disagree with. But who cares? This is a human being we’re talking about—a person with people who cared about him! And he’s dead! How is it possibly in good taste to gloat and make gleeful remarks about his death?

Sometimes, social media makes me think we live in a Culture of Nastiness, and I don’t like it. But then I think about the goodness that comes about, too—the fact that through social media, we are able to form connections to support people when they’re in need. If it weren’t for social media, I wouldn’t know my Rockin’ Moms, and I wouldn’t be able to express support for the ones undergoing major challenges. I wouldn’t be able to say to the ones who’ve lost children, “Hey, your child was beautiful. She will never be forgotten; I may not have met her in person, but she will always be in my heart.” And somehow, that makes the good outweigh the bad.

I hope 2016 starts to look up soon. I hope our Rockin’ Kids come out of the hospitals and start to heal. I hope the heartache ceases and the good returns. There’s been enough heartache already this year.

To close, if you need a good cry, here’s Joey singing “When I’m Gone,” a song the duo recorded for one of their albums. In retrospect, it is heartbreaking. But also beautiful.

Joey Feek, your memory will live on for your daughter…in the hearts of many.

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