Poignancy

Why it’s hard to have a “happy” Mother’s Day

Mothers-Day-Butterfly

I generally don’t wake up on Mother’s Day to breakfast in bed or hand-colored cards.

I have five children, but they are not with me as this day begins. Here are all the reasons why:

  • My first-born, Casey Shay, died five months into my pregnancy.
  • My second and fourth, Emily and Elizabeth, are with their dad this morning, since we are divorced.
  • My third and fifth died early in the pregnancies.

I am lucky that I still have my mom. I know many of you no longer do.

And there are a lot of empty nesters who will make do with a phone call.

Some moms will visit their children’s graves today.

So I’m thinking of all of you whose Mother’s Day is not, never was, or no longer is that perfectly imagined day with little ones bringing you burnt toast and jumping on your pillows.

We still have something to celebrate. The moms and grandmothers who once held us tight.

The babies we carried, if only for a little while. Or the children we loved and raised as long as could.

It’s still an important day.

And I’m holding out my hand to you with love and understanding.

On those days that change your life for good

The first notable April 28 came in 1998, the day I learned my first baby had died.

I was teaching high school and the students were terribly excited to find out if I was having a boy or a girl. I was firmly instructed to call them on the journalism room phone the moment I knew. I only had a few more weeks to be with them, as I had resigned from my position to be a mom. School was almost out, and I wasn’t sure I would get back to teaching again (I never did.)

I didn’t call them. The sonogram showed a still baby, floating in his fluid. Lost to us.

We also had no answers. We just had to find the courage to do it again.

By April 28 of the next year, we had a baby girl, whose entrance to the world was stressful and constantly in question. But she arrived all the same, and just turned 15 a week ago. Her presence has made all the Aprils easier to bear.

By a strange collision of scheduling and timing, the next April 28 I was scheduled for surgery to correct my insides so that we could try to have a normal pregnancy in the future, without the risk of these late term losses, undersized babies, and such hardship. I remember distinctly the moment the nurses forced me to take off baby Casey’s memory bracelet, which I had worn daily for two years, and even during his sister’s birth by c-section. I cried all the way until the anesthesia knocked me out.

In April 2002, I was crazy pregnant with another girl. This pregnancy had not gone any more smoothly, a set of twins with one miscarrying at ten weeks. The other, Elizabeth, seemed fine. We would not learn until she was six that she would face challenges based on her time in the womb. They tried to schedule her c-section for April 28 and got a little miffed when I refused to agree. They sent the doctor in to convince me, but when he realized the date, he said, “Let’s neither of us show up.” He opted to work a different day, for me. So Elizabeth was born May 1.

Sometimes I think that after all these years, April 28 will have no power over me. That I can look back and think — it’s just a date.

But it’s not. It never will be. And for those of you who have traveled this road, you know what I mean. Some moments on our life’s calendar are never forgotten, can never be simplified or erased or overwritten by other events. And we wouldn’t want them that way.

14weeksaltered2.JPG

When egg and cheese English muffins make you cry

web-eliza-eating-veggies.jpgSo yesterday at the grocery store I saw the frozen breakfast sandwiches I used to eat on sale. I got burned out of them somewhere around Christmas, and stopped buying them. I figured enough time had passed that I could try them again.

I didn’t anticipate when I bit into it this morning that I’d have a flashback so visceral that it would actually bring me to tears.

Back when I was still eating these, we were trying to get pregnant. Kurt and I were just a couple months out on the wedding, my cycle charts were looking really good, and my doctor was still saying things like, “Don’t call me until there’s a line on the stick!”

We never really know what will take us back in time faster than a DeLorean at 88 miles per hour. Sometimes it’s a season change. Going into a restaurant long avoided. Shrugging on last winter’s coat. The smell of apple pie.

For me, that sandwich was the taste of anticipation and hope, something I lost many months ago, when the sticks never produced a line. I finally gave up last spring and scheduled a long-pushed-off surgery, one that required me to have my tubes tied. No babies for us, not anymore.

I didn’t finish the muffin.

Adoption is in our future, and we’re hopeful there too. It’s a daunting process, and one we’re doing our best to rearrange our lives for. We still have many months to wait, as unlike with your own babies, when you can get started any time you like, most adoption agencies require us to be married two years.

I hope this next year finds us in a better place on the family front, and maybe by the next time fall rolls around, I’ll be able to eat egg and cheese sandwiches again.

Casey Shay would have been 15 today

Now that Emily is in high school, I think I have a better idea of what life would be like with Casey. He’d be getting his learner’s permit, and the shrieks heard ’round the world would be me, hands on the dashboard, eyes squeezed shut or open wide, as we careened along side streets. (I always picture him as a dare devil.)

14weeksaltered2.JPGBut I have to admit that as time passes, I feel less connected to the kid Casey might have been. We can imagine babies in all their temperaments — cranky or calm, excitable or chill. But a mostly grown boy can be so many things. Athlete. Gamer geek. Gregarious. Shy. Friendly. Quiet. So many shades between. He is unknowable, forever a collection of white blips on a black background, a shape in the dark.

It’s not often that I think of him with sorrow anymore. Casey is the name of my mission, my life’s work, the purpose handed to me from my first-born. He becomes ever-abstract, a dividing line in my history.

But today is not one of those days. Once again he becomes a baby, and today is the day that we might have celebrated his arrival. And the future I would have had with him is as unknowable as he is to us.

On Meeting Your Heroes

I first learned about October 15 in 2007. I posted a hurried message about it, encouraging proud angel mamas to spread the word and light their candles at 7 p.m. their time. I didn’t know a lot about the day or the founder, but I knew it was a good thing, the sort of big event I was looking for.

My own web site was already nine years old, the time when you start to try and shake up what has become routine. I wanted to keep growing and moving us forward. I remember feeling frustration (and I still do) that mothers felt they had to “hide” their losses and that talking about their babies was still such a taboo. We’d gotten nowhere.

And along came Robyn Bear and her site for Pregnancy and Infant Loss Remembrance Day. She and a team of volunteers took the measure to the legislatures of all fifty states and got it passed federally as well. I was amazed at their effort and the years they spent making this happen.

Naturally I reached out to Robyn pretty quickly. Someone with that much staying power, already seven years post-loss and still going strong, was going to be a big part of the baby loss community. Turns out, she was also very generous and friendly.

webRobyn-Deanna-2013midThis year I decided ENOUGH, and packed my family in the car and drove four hours to where Robyn lives to deliver a box of books she had ordered from me personally. We had lunch in a little restaurant in her home town, and she was amazingly just as wonderful as I thought she would be!

Our miracles babies (okay, tweens and teens) sat at one end, and the husbands chatted about work and weather, while we reviewed our two journeys through loss and the determination to actually get involved in the lives of other grieving mothers, and to carve businesses from this so that we could continue working with the community full-time.

I think our partnership in making sure the needs of baby loss moms are met has only grown stronger by meeting face to face. We may have our separate web sites and support groups, and she may focus on Oct. 15 candle lightings as well as remembrance items and jewelry (and man, does she find some beautiful stuff), while I focus on books and information and support groups, but we are definitely united in one thing — making sure women facing these impossible losses have a place to go, a community to talk to, and ways to memorialize and remember their babies.

I see a day twenty years from now when we’re little old ladies, and still holding the virtual hands of the young women who need us. We’re here for the long haul. We’re here for all of you. I can’t imagine a more perfectly suited partner or a more beautiful person, inside and out.

 

My girls at our first Oct. 15 candle lighting in 2007.
My girls at our first Oct. 15 candle lighting in 2007.

On Cory Monteith and being a Gleek

I’m not a television watcher whatsoever. I’m often clueless about major TV events. I never saw a single episode of Survivor or The Office or even Friends.

But Glee had such an intense online push that even a small-screen luddite like me had to notice. It showed up in my Facebook sidebar, on banner ads, invading my web space. Finally, I clicked.

And I was hooked. The concept was amazing and the pilot spot-on perfect. I was reminded of my own days teaching high school and admiring the amazing talent that sometimes came through my doors.

Cory Monteith played a character that fit him. He did not come to the show with mega-singing chops. He was everyman, and watching him perform with a talent like Lea Michele made us all feel as though any of us could hold our own on stage.

Learning that someone like Cory died so young breaks my heart. I’ve enjoyed reliving some of my favorite Gleek days, in particularly this one below. I remember how hard I cried my head off during this episode when Cory’s character Finn has been told he will be a father, and he sings to this sonogram.

Today, watching it again, I realize how full-circle my Glee fandom has come. Fans of my upcoming book Forever Innocent voted Finn as the name of the baby in the story, which features a young high school father much like Cory’s character, trying to do the right thing by his girlfriend and his son, but messes up spectacularly. This song and this moment was just perfect, so I share it with you all one more time.

Farewell, Cory.

To the Good People on the Arbor Trails Running Path

I didn’t mean to make you uncomfortable during your exercise regimen, really.

See, I got up today and things were so totally normal. 6:20 alarm. Made lunches for my two girls. Set out outfits. Got Child 2 to show choir rehearsal. Got Child 1 to the bus. Tracked down missing item for talent show and took it up to school.

I mean, all was well, right? I arrived at the running path and set off like normal.

Except that at some point, 2 miles in, everything went wrong. One minute I’m zipping along, darting around muddy spots, and the next minute I’m bent over, sobbing my fool head off.

People of the Trail, I know this was disconcerting. I beelined for a bench, a little off to one side. I meant to sit ON the bench, really, but missed and ended up sitting in the mud with my head in my arms.

I’m sorry that it might have caused you concern.

See, today is a little harder than I’m letting on. Today Child 2 gets yanked from school, taken to the hospital, and wired up again. She is taking this too well, with a little too much shrug in her shoulders, and I hate that her sunny little life has gone so gray this year. Anti-seizure meds not working? Shrug. Failing school? Shrug. Hates her practical hair cut for the wires? Shrug. Missing the yearbook staff party, the culmination of a year’s work? Shrug.

eliza-bucketMaybe I was crying for her, for the kid who didn’t really deserve all this disaster, who got a “bucket” from her fifth-grade class yesterday that was full of “You’re nice and kind to EVERYONE” and “Great smile, britens my day.”

But among the people trying to keep their pace up and avoid the crazy crying woman, there was that man, the one I’ve seen on the trail every day, and worried over actually. Seventy, easy, wearing a long-sleeved shirt and baggy khakis with a funny old-timey cap pulled low over his dark eyes. His sun-worn brown face always shifts into a big bright smile when we pass each other, his shabby Hush Puppy loafers shuffling in front of the other. “Buenos dias,” he always says with a nod. “Good morning,” I answer.

web-rose-on-benchHe thinks I didn’t know who he was when he walked up, but I knew his shoes, the pants, the shuffled step. I waited until he was gone and pulled myself together. He’d left a rose on the wet bench. When I looked either way on the trail, I didn’t see him.

I do what we do in these moments, pulled myself up and brushed dirt and wet mulch from my legs. I recognized the rose from the bushes in front of the bank, plucked, no doubt, but I had a feeling where this guy comes from, forgiveness is stored in buckets by the door.

Maybe you don’t believe in guardian angels, but I’m pretty sure I do now. Whether they are celestial beings or real people, doesn’t matter, but I know they are out there. And those of us going through whatever we are forced to endure, sometimes it just takes looking to see them, and sometimes it just takes having faith that they are there.

When your life’s calling comes, answer it

Faith is taking the first step even when you can’t see the whole staircase.

Martin Luther King, Jr.

Sometimes when I look around, I see a lot of lost people. Some are justifiably sad—tragedy is happening to them right now. Some have had past losses, and they look to those dark days as the reason why they are still living without joy.

Others are just taking life day by day, waiting for something, the One Big Thing they’ve always imagined, and regularly seem to sink when another night comes, and it hasn’t happened.

I had lost years myself. I spent my twenties in pursuit of nothing special. A whole decade of stumbling around, switching jobs, always wanting something else. The not-now. The better-down-the-road.

Then something big DID happen. Not a book deal or a lottery or sudden fame. The worst sort of thing. As I rolled down what would be considered an ordinary life—marriage-first-house-pregnancy, my baby died. Just died.

This is where my road divided. I had three choices:

  1. Feel stuck and bitter and grief stricken.
  2. Pretend it never happened and move forward.
  3. Turn this moment into my personal call to a life that mattered.

Everyone who is reading this blog knows what I did. I changed everything. Since then I’ve given speeches, run web sites, written books, and made myself as available as possible to any Baby Loss Mom who approached me. It’s been 14 years—coming up on 15 very soon and I haven’t slowed down one bit.

I was lucky. I recognized when life handed me a purpose. Loud and clear I got the message that this terrible event was the thing that could save me. And while I’d certainly trade my life now for the life I could have had with Casey, I made sure, absolutely sure, that I never doubted why I had been brought on this planet, and why he had, so briefly, made his small appearance.

I can tell you — there is a reason for you too. Somewhere in your life there has been or will be a Call to Action. My hope is that everyone sees it when it comes. And that it not only gets you through whatever is happening — life, death, poverty, oppression, bullying, loss, overwhelm — but that you grow so much from it that you expand and envelop others who can learn from what you have endured.

My wish is that you too can take your experiences and turn them into action, mold your life into a passion, review what you have survived and bring about change.

It’s in everyone. The tall and the small. Elizabeth is only ten and she gets it — she made her whole class study epilepsy last year and over half of them chose the Epilepsy Foundation as their non-profit to support in the community service. One purple scarf given to her last month means dozens more will be made in her Knitting Club to give to other kids.

Look around you. Look at yourself. Take what is difficult and turn it into good. Learn from what you did wrong and lift a stumbling block from someone else.

Be the change you’re looking for.

 Our lives begin to end the day we become silent about the things that matter.

Martin Luther King, Jr.

When one purple scarf makes a difference to a girl with epilepsy

Elizabeth went to the neurologist office this week so we could sort out the new symptoms of her medication (Lamictal) and find some strategies to manage the changes in her life.

While we were there, the Nurse Practicioner came in with several hand-made scarves in varying shades of purple, the color chosen for epilepsy awareness. “Pick one,” she said.

Elizabeth was shy about it, but eventually selected a simple solid purple scarf with an intricate weave. On it was a round sticker that read “The Purple Stitch Project.”

The meeting went on, about her sudden weight loss (10% of her body weight in three months), her sudden downturn in school (we sign failing papers almost daily), and her overall feeling of tiredness and well, just blues.

We’re not giving up on the medicine, as it’s the last one they’ll give us. We’ve been through others, and while sometimes they work for a while, the seizures return, often more frightening than the last. Elizabeth, now 10, has been medicated for three years. We’ve been through seizures in the swimming pool, at the top of playscapes, in restaurants, at parks, many at school, including one during a whole-school assembly.

Life isn’t easy.

But she held on to this scarf as we left, puzzling over the stitches. She had joined a knitting club last year and wondered how hard this particular pattern was to follow. I asked her if she wanted to make scarves for the Purple Stitch Project herself, and then she had the brainstorm that maybe the whole club would.

I wrote the mom who runs the club, who thought this was a fantastic idea–the girls making scarves as community service. They’re going to stock up on purple yarn when they start the club up again in the spring. The one scarf given to Elizabeth will keep on giving–both in providing gifts to other children with epilepsy, but also making sure the thing that makes her different from her friends is something they can talk about, to bring them together rather than set her apart.

I don’t know everything that goes on inside Elizabeth’s mind, the changes in weight and self-image, going from from manic energy to lethargy, from seeing the silver lining everywhere to feeling surrounded by doom, to doing well in school to having trouble concentrating on anything.

We do the best we can.

If you knit, we encourage you to join in. Make something purple and send it in to the Purple Stitch Project. The child who gets it just might be someone you know, someone like Elizabeth, who will take your one scarf and turn it into something much, much more.

A letter to Chris Baty on the eve of NaNoWriMo 2012

I’m sure all those years ago, when you and a few friends cooked up the crazy idea to write 50,000 words in a month, you had no idea the impact this new event might have on the lives of hundreds of thousands of people across the world.

Let me tell you how much it changed mine.

In October 2005, I had a broken heart, two small children, and no idea how to find the time to write the book I wanted so much to get on paper. As a self-employed single mom who lost most of her friends in the divorce, I struggled in every way.

But a librarian had told me about NaNoWriMo, and I wondered if I should try it. Somewhere between diapers and custody hand offs and school pick ups and photography clients, I would make it happen.

So I got myself to the Midnight Write that year, organized by the incredible Austin Penguins, a well-established local chapter. I didn’t know a single person but sat at a table in a 24-hour cafe, surrounded by other determined writers, typing the opening words to a novel I’d been thinking about for a year.

Deanna & Ivy at Austin Java 2005

About a week in, at a writing meet up at a coffee shop called Austin Java, I sat down by two women, who let me know it was cheap wine night and to avail myself of a glass. They introduced themselves as Ivy and Audrey. A few minutes later, a fourth person, a guy who went by Fool, joined us.

The evening, greased by red wine and a sense of hilarity in trying to write novels on such a short timeline, caused us to laugh and joke and try to out-wit each other with ridiculous scenes.

Ivy, Deanna, and Audrey on the night of the end of NaNo party 2005

We became tight friends, and on the last night of November, I made my word count, as did Audrey and Fool. I had done it. 50,000 words. A novel more than half finished. And friends.

We celebrated the next Saturday at a party hosted by the Penguins, then made our way to a jazz bar called The Elephant Room. We were met by a man named Kurt, a friend of Audrey’s, who wrote me a few days later to ask if he could read my work. With the encouragement of the Austin Java crew, Kurt and I began dating.

Our Bookstore Wedding

This last June, we were married.

The Austin Java group, now bigger and even more amazing, still meets every Monday night for wine and writing. Many of them flew to New York for our destination wedding. We held it in a bookstore, of course. Both Kurt and I do NaNoWriMo now. It’s something we always make time for.

The expanded Austin Java group in New York at the wedding.

Three of my NaNoWriMo novels have been published. Two of them hit the top 500 in Amazon during their releases. I am very close to my dream of becoming a full-time writer, and I have a following now who signs up to read my NaNo excerpts as I release them during November.

My life is amazing.

So Chris, maybe you had no idea that your idea would have such an impact. But the trajectory of my life completely altered by what you started.

And so, thank you.

The original Austin Java group in 2011

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