Disclaimer: this is a long blog essay-thing, but I told myself that I should use this space to write about what's important to me. My family is what is important to me right now. So I'm going to take a breath and post a first draft...
Now that I’m a parent, I know how much mothers can love their children. It’s different from any other love—self-sacrificing, challenging, hilarious, bigger than anything I’ve ever felt.
So now I know: I can’t understand a mother’s grief when she loses her five-year-old. I can’t. I don’t know if I can handle it. Another teacher told me “You could. You’d keep on living.” But. I would want to curl up. I would want to hit and kick and drag my son back. I believe in an afterlife. But it wouldn’t heal.
I couldn’t want to forget.
This is what I wrote, on the night I first met my niece:
Tabitha was born Thursday, October 11, 2007. I went with my sister and her husband to see her on Friday, October 12. We started to look for John and Monica’s house at around 7:45 p.m., but we got lost several times (those roads in Orem are CURVY and hard to follow), so we went to Allison’s house for directions. Allison drew a nice, clear map, even though she had two or three friends over for company, and I got to hold Bryndi, which is always fun (she’s getting big, and her hair is so dark and thick and curly!). We finally arrived at John and Monica’s house at about 8:30 p.m. or so (it was right, not left, from the stop sign near Allison’s). Monica was sitting on the couch, and John was on the rocking chair. Tabitha nestled in Monica’s arms. She looked so cute, with her full lips and her long fingers and toes still wrinkled from the wetness of the womb. She could be a pianist, with fingers like that, and her toes could make her an excellent runner or ballerina (or something—I don’t really know what long toes would indicate, so I’m just making it up). All of the other kids were in bed, so Kristie and I talked to Monica as I held Tabitha. She seemed so tiny, so fragile, and she made little squeaky grunts as she moved. I held her and rocked her until she started crying just a little—I’m not her mommy, after all—so I gave her back to Monica. Kristie got to hold Tabitha as well, until she started hiccupping, which, understandably, made the baby a little upset. Although she took her time coming out, Tabitha is a curious, adorable, happy-sweet addition to the world.
I was pregnant at the time. About seven months pregnant, in fact—just like I am right now. Tabitha’s mom Monica is a super-doula-birth-teacher-reader-writer. Her dad, John, is my husband’s movie-political-savvy oldest brother. They’re two of the best parents I know. I wanted to be like them. I still do.
Tabitha always adored Elmo. So one of her hospital stays, around when she was two, I went with her Aunt Melody and we bought her a giant Elmo balloon. We brought it to the hospital, and talked to her a little, but she hardly looked at us. She kept staring at Elmo, totally in love.
Tabitha comes from a large and joyful immediate family. John and Monica support Ethan (a brilliant scientist, now in college), Natalie (what an actress!, now in high school), Evan (athlete and general football-lover, now in elementary school), Colin (reader and asker of questions, also in elementary school), Jaxon (great hider and playmate, elementary again), Mariah (the best hugger ever, elementary a final time), and three wonderful foster children (including a baby). Taleah, who had type one Spinal Muscular Atrophy (SMA) that exactly matched Tabitha’s, died two days before her fourth birthday in 2005. All of them sat with Tabitha in her hot air balloon-painted room. And talked with her, and read with her, and watched Johnny and the Sprites with her...
Taleah fell in love with Dorothy and The Wizard of Oz, where a beautiful girl goes on an adventure in a colorful, magical place. Tabitha fell in love with Alice and her Wonderland—another story of a curious girl and the crazy magic she discovered. I don’t think it’s a coincidence that they both adored fantasy, strong heroines, and an escape from our world. Here neither one of them could walk, and they had to fight to breathe. They had to deal with pain. But they always, always fought to stay.
Because here there is also love.
Tabitha taught me that it’s good to be stubborn. It’s okay not to accept things like they are. It’s okay that I’m furious at SMA, that I feel like it’s ugly and unfair and the disease is no decent reason for a child living to two days before her fourth birthday, or a handful of days after she turned five. That isn’t long enough, and I’m stubborn enough to believe in those willing to fight for a cure.
I’m glad Monica and John are fighters. And I will always be dazzled by Tabitha’s fierce tenacity.
There are lots of stories about Tabitha that aren’t mine to share, like the way she made her wish to visit Alice at Disneyworld and refused to open her eyes for the princesses when she saw Alice wasn’t with them, or the contrary nature that made her stop playing some chimes by her bed until her mom told her “Fine. Be quiet!” and then she started playing again. But there was the moment when, as a new, exhausted mother, I showed up at Monica’s house with a one-month-old son so I could learn how to use a baby sling.
I don’t remember the demonstration all that well, although I can use the sling now, so it must have been good. What I do remember is Tabitha’s smile. I looked down at her, cooing on a blanket, and she gave me the biggest smile, complete with dimples. And I couldn’t stop staring. My son didn’t smile yet—babies don’t until they’re about three months old—and so all I’d seen for weeks were serious staring expressions or (too often!) angry open-mouthed screams. I felt so thankful to Tabitha in that instant, not just because she showed me that my son would grow in a month or two and become capable of expressing actual happiness, but also because she was so giving. She smiled at me, and she kept smiling at me, and I needed a baby smile then more than I ever will again.
I went home, son and sling tucked together in the backseat of our car, and I remember: because of Tabitha, I finally felt like I could handle being a mom.
A lot of things have seemed unimportant recently. Normally I adore my job, but it’s hard to teach. It’s hard to write. When Tabitha was admitted to Primary Children’s Medical Center for pneumonia, I felt like she would be safe. Taleah and Tabitha always fought their way out of the hospital. Taleah died suddenly at home. So when we visited on Sunday night, I thought she would be going home soon. And then there were tests, and electrolytes out of balance, and everything got worrisome until Thursday. On Thursday I couldn’t write fiction very well, because Tabitha’s heart rate soared and she’d been readmitted to the PICU, and so instead I wrote this:
Thursday, October 25, 2012
Tabitha is at Primary Children’s. She may die.
I don’t want her to die.
We went to visit her on Sunday. My oldest son brought his angry birds to show her, and we colored her a picture of the Cheshire Cat to hang on her wall. She couldn’t seem to open her eyes very well. I assumed she was sleepy, and sick, with the IV hooked into her hand and her purple-red fingernails. We sang her Happy Birthday, even though her birthday was weeks ago. We never got to sing to her at a family dinner because she wasn’t feeling good, but she’s five now, less than three months older than our oldest, and I wanted our sons to sing. To know she’s their cousin, and she’s five, which is a big milestone for any child.
I need to write. I don’t know if I have any words. I need to grade, but I’m not sure I can focus. Then there’s Halloween flyers for the neighborhood party tomorrow, and we need to buy cat food…but all I can think about is Tabitha, so sleepy she can hardly open her eyes, and I hope there’s a miracle and her heart starts beating right and Monica and John can take her home…
That night we visited again. They thought she’d been stabilized. That’s all I wanted. And I’m an optimist.
When we ate at the hospital Thursday night, I really thought she’d be okay.
Tabitha died on October 27th. On Thursday, I put my right palm on her casket. My sons have pink handprints on there—hot pink, not pastel, because Tabitha hated pastel pink. She wore an Alice dress under the rainbows on the lid, and siblings and cousins sprinkled her with glow-in-the-dark stars.
We went to a tea party in her honor on Saturday. It was happy and heartbreaking, and she would have loved it. Especially the Cheshire cat cupcakes. And the sparkles. And the doves.