Bengali Angel/Sundar Paree

Today is the birthday of Fateh, a college student from Chicago who received his second bone marrow transplant in Seattle in May 2001–he and my husband Greg transplanted on the same day, and his parents and I joked about our “twins” throughout the entire process. Fateh was his parents’ only child, the much-loved son of two college professors. We ate meals together, rode shuttles, sat in waiting rooms, and (occasionally on weekends when the pharmacy was closed might have) shared a nausea pill or two.

Sometimes, we got on one another’s last nerve, I’m sure. But mostly, we were glad to have a partner on the journey, someone in lockstep with us–mucositis ending at the same time, food tasting good at the same time, etc.

We were in this terrible thing together.

But Fateh, sadly, is gone now; our comrades who are surviving are few: Susan, Jerry, Rick, and Greg. And as one of such a small number, I try to remember important dates, send cards, and check in. So, almost every year, I call Arzu, Fateh’s mom, at least twice: on his birthday, and on the day he died.

And we have the same conversation.

I have never before been in a relationship where there is so much sameness; always, his friends have just left–because Fateh was that way: he lit up a room, was funny and dry, spoke with authority–and his friends, even after all these years, go to his parents’ on his birthday. So the news from Chicago always begins with a rundown on the lives of these people I will never meet, Arzu’s surrogate sons. They have children. They are married–or divorced. (Tonight: “Two have divorced their wives–and Fateh was the best man in each of their weddings!”) Life is going on. There is news of relatives that we met while they visited in Seattle, precious Kum-Kum, a calm and beautiful woman who was a pool of tranquility for her sister and me, now about to be a grandmother. Her son’s wife is expecting. This is all very matter-of-fact.

And finally, how is Greg? The girls? Are we well, and happy? That is good. It is good that Greg is alive. He had so much to live for.“My son’s life had never truly begun. But he is remembered, by his friends and by you.”

My girls are shrieking with laughter in the back room, and I know she hears what she does not have.Then, revisited: did they do all they could? Was going to Seattle the best thing? Were they wrong not to return at the first sign of problems? There was that other boy, also Indian; they did go back to Seattle, and still, he died. “He lingered two years first, then died.” Surely death was coming at any rate; the fact that I can now name only four survivors shows that, really, Fateh’s chances were slim from the start.

At Christmas, they will send us a check: $101.00 for the girls. Why that amount, I’m unsure. With it, I buy angels. And maybe, when my girls are grandmothers, they can show their grandchildren these angels, and tell them the story of their father, Greg, a white man who had a one in six million perfect match on the National Bone Marrow Transplant Registry and his friend, the Indian-American who had no one.

No perfect match. No great-grandchildren.

Only two very sad parents, having annual chats with their friend from Georgia–the friend who had everything.

 

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https://bethematch.org/

 Originally written in 2012; some names have been changed

Carrying Our Buckets

April sent me a text today. It said, “Can you let everyone know my address changed?”

The answer, in at least a part of my small-town-South-Georgia heart, was an amalgam of No and Do I have to? 

Do I have to tell everyone that things didn’t work out with your birth family? That you are now somewhere I’ve never been with a boyfriend I have never met? That I can barely eat, sleep, or recognize my own life any more?

April’s answer would, of course, be yes because, after all, she’s been raised a lot like I was.

The one thing my mother, though bipolar and hampered, demanded of us children was that we live with authenticity.  Momma never attempted to hide her alcoholism or make excuses for her behavior–everything was pretty much as it appeared.

She was never embarrassed or ashamed of her life, and April isn’t, either.

So: April is now living with her sweet and hardworking six-foot-six firefighter boyfriend at his father’s home in New York. She’s doing jigsaw puzzles with his step-mom, tending the cats, and interviewing for a job at McDonalds.

Me, I’m crying into my eggs at Cracker Barrel.

Abby says we are tired because we are sad, and we are sad because we are traumatized. The therapist, Ashley, also uses the word trauma, generally preceded by the words “so much.” She says that we have to be gentle with ourselves, that our buckets are so full that if one more thing goes in, it all overflows. We think we have to try to clean up the mess. But we can’t do so quickly because we are exhausted. This is too big.

Ashley says we are trying cope in ways we have before, do things that have worked for us in the past, and that they will not work right now because our buckets are too full.

I can’t make myself eat. I can’t load the dishwasher.I can’t power through.

I have always been able to power through.

There is no way to now–the wall of trauma and grief is so massive, its chinks so small. There is no climbing over, digging beneath, or medicating this away.

So, there is the gentleness we show ourselves. The conscious decisions: Self, I think that you should take a hot bath instead of going to the football game. Self, I think you should eat a piece of string cheese or maybe some peanut butter. Self, if you wear those soft pants to work, they will feel like pajamas, and maybe you will make it through the day.

There is the gentleness we show each other. Last night at Cracker Barrel as I struggled through tears to eat, Greg put his arm around me, and Abby said, “Momma, it’s okay. You’ll feel better after you eat.” We all practice saying the right things; we check in. We offer. I’ll  carry your cup to the sink. I’ll take the trash out, you rest. 

There is the kindness of others. One of the most encouraging things, the clearest assurance of God’s love, has been the random way that people reach out. Flowers sent unexpectedly to work. A funny text. A Facebook wall post. A student’s hug.

What there’s not?

There’s no force. No to-do lists. We are not yet able to make ourselves take a walk/go to church/write thank you notes. At work on Friday when my computer screamed and died, I told the kids, “I can’t even pretend to have the energy to pull off Plan C right now, guys,” and instead, we had a rambly, mostly student-led class discussion (fulfilling ELAGSE9-10SL1).

There’s no must. I’m supposed to take dessert to a party that starts in less than an hour. And although I could do so blindfolded, I’m not making my famous pound cake or even Duncan Hines brownies. I’m throwing some Yorks, Smarties, and Starbursts in a bowl and smiling when I hand it to the hostess.

There’s no denial. Everyone in our family has rocked a dead baby. A sentence too horrible to type has been lived. Then April left, and we didn’t expect her to. Two horribly hard losses–losses none of the four of us can deny.

Finally, there’s no shame. One of the most profound and truest things I ever read: we are never ashamed of those we love. I can cry in Cracker Barrel. Abby can rant in the hallways at school. Greg can be a hermit. April can live her life, pick her way through grief, choose her own path forward.

Ashley says we have to be kind to ourselves until at least January. There can be no self-recrimination. No expectation of perfection. She says if we feel the need to self-criticize, to instead list the traumas of the past year. “Just list them. Remember: it‘s a lot of trauma.”

Our buckets are so full and messy–and April took hers all the way to New York

Her address has changed. Her life has changed.

But our strong girl, well, she’s still carrying her bucket–and we can’t ask for more than that.

 

 

 

 

 

 

Stillbirth: Four Months On

After the due date, things get loud.

The quiet sadness becomes a loop of thought

Weshouldhaveababyhereweshouldhaveababyhere

Followed by a stacatto percussive

WEDON’THAVEABABYHERE

Such terrible knowing,

Understanding the minuscule chasm between

Don’t and Should.

Should is willingly carried.

Heavy, yes. A burden, yes.

Obstinate Don’t refuses to be carried.

Demands to be left.

Doesn’t need help. Just recognition.

It is simple, horrific truth.

Don’t is all of the Gone in a pile.

Endurance requires remembering an unknown.

Small grace: this remembrance requires no mustering

Because you built young an assurance in the Unseen.

Before all this Terrible Seen.

 

 

 

A Tenacious Friendship: On 25 Years of Marriage

Today, my husband and I have been married for 25 years. 9,132 days.

Any essay about marriage includes the words young and dumb, so I will get that out of the way now: I, at least, was both. I think I’m also required by the genre norms to say marriage takes work, so I’ll grant that as well, but without the paragraph about how the work is hard.

Because, really, I don’t know that marriage is hard: it may just be that life is hard, and life is long, and many of us live the same day over and over. There is struggle and sameness and routine, and none of those things are necessarily appealing. Same house, same job, same finances, same problems, same man–that’s a lot of ordinary in a society that wants extraordinary and special and unique and wow. And demands it all the time.

Society also wants happiness. Romance. Candles. Beach trips. Sunsets. We are conditioned to want these things. And if our husbands or wives don’t deliver them, we are programmed to find someone who will.

Greg and I aren’t that couple.

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We teach at the same school. For the last several years, we’ve eaten lunch together every day, on our china. (The guy hates paper plates.) This year, we have different planning periods and lunches. There will be no lunchtime Youtube videos, no swapping of midday stories, no chaste good-bye kiss planted atop my forehead. We won’t see each other at all.

He realized this on the first day with students. That afternoon, I heard his truck in the garage, the slam of the door, and then he was in the kitchen, asking, “So, I’m not going to see you ALL DAY?“

I could hear the outrage and urgency in his voice. I chuckled, “That’s the most romantic thing I have heard you say in years.” (He advised me to write it down.)

What I wanted, what society told me to want–a romantic guy who adored me, surprised me with gifts, swept me away–is not what I got.

But when I think that, I recall that he didn’t get what he wanted, either. I am surly in the morning; I am a nervous worrier, and I grow weary and faint-hearted well before he does. Not on his wish list, either.

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Earlier, this summer, we were on the sofa watching TV. I couldn’t get comfortable. I kept moving pillows, adjusting the lamp so it wouldn’t reflect on the screen. I looked at him and laughed, “You wouldn’t marry me again, would you?”

He made me stop laughing with a quick, “No.” Then he added, “But you wouldn’t marry me again, either.” He wasn’t being malicious. He was being honest.

After the miscarriages, the cancers, my broken leg, the financial worries, the continued health concerns, our granddaughter’s stillbirth–our blinders are off. We have been married twenty-five years: everything is obvious.

We wanted something else. We got this.

We expected something else. We got this.

We wanted a beautifully packaged life, and we got a jumbled stocking. Things are broken, things don’t work, but there are things we cherish, too. 

What I love about us, our marriage, our family is that we respect the jagged edges. We see them. We don’t waste our time in denial and soft-pedaling. In addition to its trite mandate of “making every day count,” cancer does a stripping, a peeling away that is much more valuable. It creates an honesty where whole families can abide–a recognition that there may be no sunshine in sight, but there are companions beside you to ride through the storms ahead. As parents and as spouses, we manage to be those to each other.

It is easy to divorce, to go away; we saw that so many times in Seattle, the spouses who would leave, return to work, miss doctors’ rounds, make excuses. We saw boyfriends and fiancees just say, “No, I can’t do cancer” and leave their formerly beloved to go it alone.  It would be easy to fight and finger-point and constantly live in hindsight.

We don’t do that. There’s not a past. There’s a Now. The bone marrow transplant created a Now of fatigue, eye pain, secondary cancer threats–but it gave my husband life. Poor financial planning created a Now of paycheck-to-paycheck living–but our needs are met. The severity of my leg break, combined with fibromyalgia, makes some days very hard–but many days aren’t.

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We sat at supper Monday night, Greg, Abby, and I. I said I was working on a blog idea for our anniversary–“what you want versus what you get”–and they both understood. I named things I had wished for our future when I was 21 and naive. Greg listed what he had wanted at 25, on our wedding day. Those failed hopes. He rattled off the things we’ve gone through, noting neither of us would have chosen them. Then rhetorically, he said, “What choice do you have? What choice do you have?”

It seems so unromantic: to face our marriage as the only choice. This hard daily is our only option. Greg faces cataract surgery in September and major heart surgery in the next four years. Sometimes, we give up on the idea of ever finding relief, thinking this is our marriage, our lot.

But, I think, there is a lot of love expressed just by daily presence, by showing up, by being here again. By coming alongside for a surgery, for a fibromyalgia flare, for tears in the night. On our wedding day, we didn’t consider a future that included so much pain and heartbreak and worry. Our pictures from that day are so earnestly hopeful. There was so much we did not realize ahead.

One thing we did know in 1991 remains true today: our first choice of sidekick. Today, we can walk down the hallways at school and hear our students say to one another, “Goals!” They are so proud of our marriage. Our students don’t see romance, effusive joy, or grand gestures. They see a man who gives brings me lemonade; they witness my smile when he walks in my classroom unexpectedly; they laugh delightedly when we tease each other.

Our students see that we are friends who love each other, who are ever-present and remain.

They see the constancy, and at sixteen, they value that.

At 21 and 25, on a hot August day, we had the foresight to value that as well.

A tenacious friendship. There are no candles or moonlit walks. But, then again . . . there’s also nothing else.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dear Corporate America: The Baby Died

I had a great day. Wonderful. I had a fun day with best co-workers on earth, and the day before school starts is like Christmas Eve for teachers anyway. I came home happy, thinking about tomorrow–the kids I was about to meet and the fun we would have.

I went through the mail. No bills. Also wonderful.

Then, there it was. A smiling baby in unisex garb, beaming up at me. A birth announcement manufacturer–Tinyprints–was urging my daughter to “Welcome [her] Little One.” Eight different photos of babies beamed up at me. Adorable, healthy, live babies. There was even one shot of a baby’s perfect ten toes.

My daughter’s baby, Stephanie Grace, died. We held our premature, stillborn, beautiful baby granddaughter in our arms on a spring morning, not on her August due date. There was no amniotic fluid; she was ancephalic; she had other birth defects that are too much to mention because we are trying to forget. We are trying to rebuild this, our obliteration and devastation.

I was doing so well. 

Then Similac samples came in the mail.      

They arrived on a Saturday a few weeks ago. I was upset, but able to think charitable things like, I can give that Similac to a needy child. I posted on Similac’s Facebook wall, “The baby died, don’t send us things.” A few private messages were exchanged.  I was warned that more samples were “already on the way.”

Today, though, I was outraged. I called Tinyprints.

I liked the operator too much to unleash my furious grief, so I asked for her supervisor, who wondered what was wrong with my order. I told her there was no order because my granddaughter died months ago. I said she was tiny and precious and described her birth defects. I told her that when we hung up, she needed to let her supervisor and her supervisor’s supervisor and the president of the company know. 

I cried. I screamed a little. I’m sorry, Corporate America.

I’m sitting here on my sofa right now, still sobbing, Corporate America.

I guess, really, truth be told, I’m wailing. And it’s your fault.

You commoditized my daughter’s name. You paid for it. You  vacuumed it up in some computer that chirped merrily. “Pregnant woman! New superconsumer!”

Corporate America, you can do better. Your same computer, with the same urgency, should learn when a baby dies. The doctors’ office staffers who cajole patients into filling out free sample cards could give them opt-out forms after babies’deaths. State databases of stillbirths could be uploaded.

If direct mail can be so precisely synchronized that it arrives within 24 hours of a baby’s due date, surely it can be unsynchronized as well, especially if that baby died months ago. 

Grieving mothers could be instantaneously removed from mailing lists. They could be spared days like these. 

These women are bravely trying to move forward with shattered-glass hearts.

They’ve bound their breasts, buried their babies, packed up tiny onesies, and returned borrowed bassinets. They’ve resumed work and daily routines, reclaiming their lives as best they can.

And now you, Corporate America, come along and remind them of the lives that they are missing. The smiles they will never see. The Could Have Been.

These lonely mothers have endured things that no one else understands. So, please, Corporate America, at least understand this: They don’t want your mail.

 

 

 

I respectfully ask that you contact Tinyprints and Similac at the links above. Ask them to figure out a way to learn when babies die and to leave grieving mothers alone.