It’s been awhile since I’ve posted — over 2 months. There’s been good reason for it, though. The past few months have been full of ups and downs and tension, tension, tension. Any DBA parent can give a sad, knowing nod to the tension.
My hopes for the new Chinese herbal therapy were not met in the first month (after my last post). Reticulocytes still zero, nothing remarkable at all. No reason to hope.
And so, I was in a weird place for the following month. I wouldn’t say I had given up, and I wouldn’t say I had come to acceptance, and it wasn’t quite apathy either. But I had come to a place where I was shifting away from wishing she could be healthy, and realizing that she just wasn’t. And she never would be. That she would simply live her days on the brink of death, dodging one complication, and then another, until one day she didn’t, or couldn’t, and that was her lot, as well as our lot as a family.
We’d never get our lives or hopes and dreams back. Time to adjust to a new reality. And that’s okay.
Of course, then, on her next transfusion, our doctoral fellow rushed in, eyes shining, saying she didn’t know if it would last, but Adahlia’s labs showed a high number of nucleated red blood cells (juvenile red blood cells that could have only come from her own marrow), and that we’d have to see if the trend continues, but it was a step in a positive direction.
Why didn’t I post about it?
Well, because honestly, I was kind of annoyed. Of course, after managing to walk myself slowly into a place of acceptance, a place where maybe I could be happy in a place of less possibility, because I could finally stop being sad to see my graven child standing next to all the rosy-cheeked ones, because she was never meant to be one, and would never be one, I would be offered this bait, this hope, this chance that maybe, maybe all the medical procedures and dangers were done. That maybe the future was bright for us, too.
Joe said he was actually kind of proud of me for reacting the way I did. I think I just nodded solemnly, pulled up half of a smile, and said, “okay.”
Sure, I was happy. Who wouldn’t be? But perhaps, if you can imagine yourself in my shoes, you could also imagine how I just didn’t want to hear about any more hope.
And I wish I could say that fate gave me a “take that you naysayer!” and she didn’t need a transfusion the following month, but she did. Of course, she did. Where did those nucleated RBCs go? Oh, they were probably broken by her liver and down and are contributing to the buildup of unseen gallstones that are common in disorders where red blood cell production is faulty, to the point that it eventually requires removal of the gallbladder in the child.
Not to be Eeyore, but there is just so little to be enthusiastic about in DBA. It is a damn struggle to remain positive, present, and real. The bottom line is that red blood cells are vital to health. Not making your own, and filling the body with ones that aren’t yours (or taking steroids to force your own production) is an extremely toxic situation that forces coping mechanisms throughout the entire body. It is a broken system. It needs rectified on a fundamental level or else… well, you just can’t expect anything good. You can only compensate for so long.
Are you still reading? Bless you.
For your solidarity, I will reward you with something joyful. Next time, I’ll share part of the conversation I shared with Adahlia’s hematologist, and share a fun drawing Adahlia made for me on her “gallerina” wall. (She combines the word “gallery” and “ballerina,” I think.)
But for now, I give you: Baby Catrina.
You see, Adahlia won a pageant. It wasn’t your typical pageant, and I certainly didn’t send her to into knowingly.
What title did she win? “Miss Catrina.” What was the event? The Day of the Dead.
Adahlia and I like the Day of the Dead, and although we aren’t of Hispanic or Latino heritage, we enjoy celebrating it. Like many folks, we are a bit fascinated with death. We like Tim Burton’s “The Corpse Bride” and “The Book of the Dead” and when she’s older, I’ll show her “The Nightmare Before Christmas” and she’ll probably like it, too. In fact, we enjoyed celebrating El Dia de la Muerte so much that we decided to go to our town’s annual festival, which happens to the largest Day of the Dead celebration in the State of Colorado, and ranks among the 10 largest in the nation.
On the morning of the festival, Adahlia declared that she wanted to go as a “dead princess and corpse bride.” (She wore 3 different Halloween costumes this year — she was a bat, a wolf, and dead-princess-corpse-bride.) She had sported the dead princess portion of the costume to her friend’s “zombie princess” party — wearing a Cinderella dress I just happened to find in her size at the thrift shop literally two streets from our house and literally on the afternoon of the party. Randomly, the costume had also contained a circular portion of tulle with flowers stitched into it that clearly did NOT come with the manufactured costume. Was it supposed to be a skirt? Or… a veil?
It happened to fit Adahlia’s little skull perfectly, and so with a little bit of facepaint and her magic shoes, we were off. (Her magic shoes are little brown slippers that I bought on consignment in Portland but were too big. I set them out for her one day, realizing she might fit them, without saying anything to her, and promptly forgot about it. She discovered them, exclaiming “I have always wanted these shoes! And they came to me by magic!” And now they are her favorites. She wears them everywhere, and tells everyone that they are her “magical shoes that appeared by magic.” (Sadly, the magic shoes are getting a little too snug, and we will have to manifest another pair soon.)
Adahlia and I met our friends the Day of the Dead celebration and the girls got their faces painted and we admired some of the altars. Our friends left, but Adahlia and I remained. We made paper flowers, watched dancers and musicians… and an elderly man, face half-painted like a skull himself, leaned over to ask me, “Does she want to be in the Miss Catrina contest?”
At my hesitation, he added, “It is only for little girls, and there’s only a few signed up.”
I glanced at the sheet and saw perhaps four or five names, with ages 7, 10, 8…
“Adahlia,” I asked, leaning down to her. She was transfixed by the traditional dancers. “Do you want to be in a contest for Miss Catrina?”
Adahlia looked up at me. She nodded slowly, as if unsure what I was asking.
We had met La Catrina earlier — the elegant skeleton lady, well-dressed and fashionable. At first, she had been scared of her. But eventually, she went up to her, received a piece of candy from her, and was forever smitten. But I realized in her mind that the title of “miss” went to teachers and other authority figures. “Do you want to be in a competition to be Baby Catrina to La Catrina?” I rephrased.
“Yes!” she said, grabbing my hand and looking around. “Where is she?” she asked.
I reached over to the clipboard and signed Adahlia up. “We’ll see her In a little bit,” I said.
Before the contest, I re-touched Adahlia’s Day of the Dead make-up and re-affixed her veil. As the event coordinator called for contestants, I led Adahlia to the stage. “Just stand right on the stage and hold onto your flowers, just like the Corpse Bride,” I said, smiling. “I’ll be right down here.” I wasn’t sure if she’d be scared up there — the auditorium was completely full. But the very front row was empty, so I scooted myself in, hoping that as long as Adahlia saw me right there, just a reach and a stretch away, she wouldn’t freak out.
On the stage next to her stood four or five other contestants. Adahlia was the youngest by at least 3 years. She didn’t seem scared, but she also wasn’t mugging. In fact, she kept turning around to look at the pair of La Catrina standing at the back of the stage, who were waiting to crown the winner.
In the aisle, a blond woman with a 10-year-old daughter in the contest exhorted her to smile and taking flash photography. Her daughter was your prototype Anglo-American with blue eyes and blond hair. She wore a traditional dress in the colors of the Mexican flag, and had her face half-painted like a skull. She was all Mexico-pride — except I was certain she was not Hispanic or Latino. I received the impression that her parents had gone on an expensive Mexican vacation, and perhaps even owned a vacation home in Mexico.
I had felt a little awkward before, a little like an intruder in someone else’s holiday. Neither of us were blond, but we were not Hispanic either. What right did we have to be at this celebration? Much less win a contest in it? I did not want Barbie-Mexico to win, but to be honest, I realized I did not want Adahlia to win either. It should be the little Hispanic girl who is dressed in traditional Day of the Dead attire and clearly put a lot of pride into her outfit, I thought. But it was too late to pull Adahlia from the pageant.
And was it wrong for her to be there?
Winner was chosen by applause. I quickly realized that although all the girls got a loud share of applause, none of the other girls had a chance. How could they compete against a pint-sized corpse bride who clearly idolized her elder Las Catrinas, and was so disconnected from falsity and show that she shyly smiled only a few times at her mother, and otherwise held her paper flowers firmly in front her, staring solemnly back out at the auditorium of the living?
Adahlia won, was given a sash and a crown, and we spent the remainder of the day making good on her reign. At the moment of her little coronation, I decided that would not slink away with her title, in the typical Ugly American style of dashing off to the next conquest or event or happening. Although I doubt anyone really noticed or perhaps even cared, we stayed until the event was over, decorating a candy skull and dancing to Mariachi music. Adahlia gave me her crown to hold and danced in circles on the lawn with the other children, her red Miss Catrina sash blowing in the wind.
Adahlia – DBA – Baby Catrina
And though I was still painfully aware that I only painfully understood bits of Spanish (despite many years of studying it), I was so grateful to be there. It was a wonderful celebration. It was a celebration powered by and infused with Love.
As the hours passed, Adahlia kept an ever-watchful eye on her beloved La Catrina. Finally, Adahlia insisted that I go tell her something. So, I walked over to La Catrina (again … by this point, we had taken many pictures with her) with Adahlia hiding behind my skirt.
“Excuse me,” I said, “Adahlia wanted me to tell you that she loves you.”
Las Catrinas 2016
(In the photo above, Adahlia’s beloved La Catrina is the one is the rust-colored dress, though both ladies seemed to be carrying the title for the event.)
That night, as I gave Adahlia a bath and washed her Dia de la Muerte face paint off, I thought of the contest. I thought of little Barbie Mexico, and how she had burst into tears after she didn’t win. How it wasn’t her fault that she was blond and privileged. Perhaps she loved Mexico. Perhaps, she was even born in Mexico. I thought of the other girls, the Hispanic girls, and how they had taken their losses so gracefully. And how I still couldn’t shake my white guilt. How I still couldn’t help but feel that the winner of the contest should have been Hispanic.
Or was that a part of the problem? When would we simply look with eyes of love?
I thought of differences in cultures. And I thought of my own life… how golden it had seemed to be, how charmed, how privileged, how lucky. I thought of how winning had come so easily… for so long, anyway.
I thought of how much loss I had willingly entered into, ever since I decided to West Point and dared to take a chance on real life, to leave my sheltered bubble for a life that might make a real difference, that might contribute to something noble and good. How all the shiny surface paint had been scrubbed off, and was still being scrubbed off.
“Adahlia,” I said, “did you know that one of the other girls in the contest cried because she did not get to be Baby Catrina?
“She did?” she asked.
“Yes,” I replied. “And its okay that she was sad, but do you think you would have cried?”
“No,” she replied, matter-of-factly.
I don’t think so either. But if you had, I could have easily lied to you, and told you that she won Girl Catrina, and you still won Baby Catrina. You wouldn’t have known.
But I wouldn’t have done that.
I took another breath. This was tricky territory, and I wanted to navigate it rightly.
“You know, it doesn’t matter who wins competitions. It doesn’t really matter that you won.”
“It doesn’t?” she echoed, making her Ariel mermaid dive underwater.
“No, it only matters that you do your best, and have fun. Did you have fun?”
“Yes,” she replied.
“Good,” I said, scooping her naked body up. “It doesn’t matter that you win, only that you do your best.”
“And have fun,” she added.
“Yes, that’s right!” I replied with a nose kiss.
“Oh, mama, you’re so cute, you’re so cute!!” she sang, flinging her arms around me.
People win and lose for many reasons. Some of them are easy to predict — Like a toddler winning a pageant. Others, we might never understand.
Later, after I finished brushing her hair, Adahlia began to cry.
“I miss La Catrina!” she sobbed. “When will I see her again?”
“Oh baby,” I said, “you’ll see her next year.”
“Does she miss me?”
“Yes,” I smiled, pulling her in for a hug.
“Will she remember me?”
“Of course,” I replied. I lifted her her up and walked through the doorway to take her to bed.
“She will?” Adahlia sniffed.
“Yes,” I told her. “You are her baby, now, too. Now, you belong to both of us.”
And in truth, she belongs to neither of us. For our children are not our children…
As I lay in bed, reflecting on the day, I thought how many mixed emotions I held about what had happened. Joy, to be sure — Adahlia had made a great Miss Catrina, dancing and playing, an inspiration of what it means to be fearless and welcoming and playful about death. As we walked around the celebration, with Adahlia wearing her crown of orange and yellow flowers, carrying her ghoulish scepter and wearing her red sash, many people walked up to us, saying to her, “I clapped so hard for you! I cheered for you!” Adahlia didn’t really understand it, but she understood that something had happened, and that it was special.
And yet, there was also something a little disturbing about it, a little eerie.
You see, there were only four or five other girls on stage. It was probably safe to say that Adahlia has spent more time in the hospital than any of the other contestants. She was probably the only little girl up there that had nearly died. I mean, shoot, her hemaglobin was only 1.9 when we first took her to the hospital. You don’t get much closer to death than that. And she may not look it, and its easy to forget on a daily basis, but the truth is that she lives one foot in the grave. Her blood is not her own. She still lives closer to death than La Catrina herself ever did.
We are not Hispanic. But what does race really matter?
Adahlia and I often talk about how lucky we are. It is important to me to cultivate gratitude, to find the silver linings and luck and beauty and laughter, even when things are falling to pieces and storms are brewing and by all mathematics and reason, we really should be miserable. And when my child gets a hot chocolate with whipped cream and sprinkles and a slice of gluten-free banana bread, when she screams giddily with excitement and exclaims, “I am so LUCKY! Mama, I am so lucky, aren’t I?” I pet her head and kiss her, grateful to have a child who feels lucky, even though she drew the extremely rare card of being born with DBA… which, by any standard, is pretty damn unlucky.
La Muerte comes for us all. And who does Death hold closer to her breast than the child with DBA? Who has more right to the title of Miss Catrina than the child who, by all of Darwin’s laws, should have perished within her first weeks of life? Who, but the child who receives her life anew one month at a time?
Two mothers. One in each world.
Baby Catrina. Miss Muerte.
Here to remind us that something fantastic exists beyond life.
To remind us how lucky we still are.
And how beautiful.
Adahlia – Miss Catrina 2016