Morphing with Memories

When Daniel died, he left behind toy trucks, plastic dinosaurs, a joke book, and lots of clothes. In a bereavement magazine I saw an ad from a woman who made memorial quilts. I called her and after learning more about her quilts and the cost, I commissioned her to make a twin-sized quilt from Daniel’s pants and shirts. Cotton shirts are the best, she told me. In his room, which had been taken over by his baby sister, I sorted through his clothes. Some were in his laundry basket that had sat untouched in his closet since his death. This will be the last time I’ll get to do Daniel’s laundry, I thought. Downstairs I placed his clothes in the washing machine and watched the water, detergent, and fabric blend together.

Once the clothes were dry, I boxed the shirts and pants and sent them to the Quilt Lady in Nebraska. About a month later, I received a box from her. I had seen photos of memorial quilts before. But I was not ready for the emotions that came when I saw one that held squares of clothes that had belonged to my child. At first I couldn’t look at the swatches of the clothes he’d worn. The Barney dinosaur in the middle of the quilt brought back memories that made me cry. Daniel had that shirt on when he was diagnosed with cancer. He’d been three.

But as the years progressed, I was able to drape the quilt over the sofa or over an arm chair in the family room and run a finger over the blocks of cotton and embrace the memories. Barney and the other shirts held stories that were precious. One of my favorite memories came to me when I saw a blue and green squiggly swatch. That had come from a shirt with a label that read Wild Boy. Daniel had been energetic--knocking over houseplants before he could stand, jumping into puddles, and peeling off his messy diaper after a night of sleep. We called him Wild Boy. He laughed at the name. I think he was proud to be wild.

As we enter onto the journey of parental bereavement, our whole world changes. In a matter of seconds, we morph into different creatures. These new creatures have different eyes and hearts, causing us to see and feel things we did not know were valuable. To the rest of the world we look like we used to. But we know we will never be just like we used to be. Now we cry when see a toy, a picture, or when we hear a certain song on the radio. We even cry when we experience a new quilt.

Life has turned upside down. From the simple tasks like the way we drive a car to how we celebrate Christmas are under scrutiny. Even our faith and religious beliefs are questioned. Spiritual platitudes that perhaps we used to quote get shot down by our new world-view. We replace them. We toss out the illusions about life we once had. Perhaps we used to believe that wearing a seat belt offered all the protection needed, until someone we love died even though they had their seat belt fastened. Eating vegetables and fruit, exercising, and being positive don’t guarantee a long life. The control we thought we had was a myth. We have selected new thoughts and methods, dug deeper into our faith to see what is real and differentiate between that which is scriptural and those false securities that were never promised to us. We have fashioned our quilts out of what is honest and true. We have not hidden from reality because we can no longer do that. We are weathered and real and growing each day into new creations.

When I teach grief-writing workshops I ask participants: What squares of truth have you incorporated into your grief pattern? How have your thoughts changed since the death of your child? What swatches of fabric are you carrying with you on your journey? And perhaps the most important question to grapple with: How can you rid your life of things that stifle you from becoming that precious being you want to be?

I think that the key is to focus on a memory that makes you smile. Recycle that moment over and over and refuse to let the negative ones or the ones that make you feel guilty live in your heart. Always choose life-giving memories. Let them bring the sunlight you need. The wise gurus say we can't change the past, so there's no point in going over it and disciplining ourselves as we think of all we should have or could have done.

When I look at the memorial quilt, I see the energetic and fun boy Daniel was. The quilt makes me smile.

Carrying happy memories into each new day opens me up to grow into that bold, loving, and fun being I want to be.

The Battle We Lost

It can make you feel that you're sinking or suffocating, or going through a little of both.

Eighteen years have passed and you'd think the damage would be over. Battle complete. Troops moved out. Rebuild. On to business as usual.

If only we were made that way.

As the holiday weekend approaches, I watch the men and women in uniform being honored, the waving Red, White, and Blue, read the grocery store specials on ground beef and chips, and feel this overwhelming ache. There stands what only I can fully see---a little boy in a Barney T-shirt and a pair of shorts. The boy needs a hair cut. His Mama wishes she'd taken care of that.

But in one second, a hair cut is forgotten. Because the boy needs so much more. He needs immediate surgery, a Broviac catheter inserted into his back running to his heart for chemo. Later he will need radiation. And stronger chemo. And prayers.

After the first week of chemo, hair falls out in clumps, sprawled out on the back seat of the dusty green van. A hair cut is not needed. His five-year-old sister cries when she sees his blond strands and balding head. "It's so sad," she whispers. We buy him a red ball cap to wear, one with dinosaurs. We buy him a blue one, too. He wears them for a few days, but when his head is smooth and shiny, he goes cap-less.



I recall how friends from church were driving in their van and passed us. I saw their smiles and knew that they were on their way to the Memorial Day church picnic. They turned right; we veered left toward the hospital. That image remains.

Every year for me, Memorial Day marks the beginning of the end. Eighteen years later and it feels just like yesterday when I sat on the sofa the Friday of Memorial Day weekend in 1996. The cordless phone was in my hand. The pediatrician told me that my son had a malignant tumor in his neck. The war raged from that day on, and on February 2, 1997, it ceased. All the surgeries, the chemo, the fight, the hope, the prayers-----over.

There was no victory; we lost.

Every year on Memorial Day weekend I am reminded of how much we lost.

Pushing it aside does no good. I have to acknowledge my heartache-----own it, for it is mine.

That's how we mamas are made.

And so I write on my blog and for some reason, that helps. Writing unleashes some of the ache so I can go to the picnics, hear the bands play, watch the fireworks. Writing keeps me from shattering like a bullet fired in the dark night.

For me, Memorial Day honors all of our soldiers---those here and those here only in the delicate arms of memory.

Reflections on a life well-lived

What we have once enjoyed we can never lose.
All that we love deeply becomes a part of us. ~Helen Keller

And so, here I am again, approaching yet another anniversary of the death of Daniel Paul Wisler, my son, who left for Heaven on Ground Hog Day, 1997.

And I am grateful that after thirteen years, the anguish leading up to his death date anniversary is gone. I can look at his photo by my computer and smile into his blue eyes and not feel the panic or misery I felt on the first February 2 after his death. I see him with hair--lively and mischievous. I view the professional photo taken of him and his big sister, Rachel, where he had a wet spot on his little vest--my attempt to remove the sticky chewing gum before the photographer snapped the portrait. In another photo, I see his clear eyes, before cancer treatments touched them, and his wide smile at the birth of his baby brother, Benjamin.

Another year and I am older. Although the pain has lessened, and I've learned to cope with being the mother of a deceased son, the love has only grown. I have learned to love my three kids on earth--Rachel (19), Ben (14) and Elizabeth (12) much more. So, my love for Daniel (who would be 17) has increased as well.

Not a day goes by that I don't think of Daniel. His life, so well-lived, and death, has shaped me into what and who I am today. Losing a child is so powerful, considered the worst loss. Of course, it literally restructures your life.

I used to come to Compassionate Friends meetings and look at those tear-stained faces with new losses, like myself. Then I heard the voices of those who were more experienced, having lived through years of grief. Now, I am one of the latter--seasoned in grief, tougher, more resilient.

Yet tears still catch me. Sometimes, even unexpectedly, I will feel my eyes fill. Sometimes the tears come when I see a blond-haired toddler at the mall, or a kid wrapping his arms around his mother at church.

I have missed you for 4,745 days, dear Daniel. And I have loved you during every single one. I toast your life of four years, I sing to your memory, and I carry the love. None of it can be stolen from me. I'm grateful that you are my son and that I am your mother.

Memories of a smile

There's a pull on my heart today---the kind that won't let go even though I'm enjoying a day that's all about spoiling me---my birthday. The wrapped presents on the kitchen table embrace mystery, and a magnificent chocolate cake made by my son Ben awaits. My two daughters whisper in the next room, and once my husband comes home, the five of us will go out to eat dinner at an Italian restaurant.

Yet, through moments of this day, the bittersweet mixture of pain and joy is evident. There's no denying that this ache stems from years ago when I sat in a hospital room with a little boy. He was the patient, but it was my birthday. The nurses brought in a cake with candles for me. The boy smiled, and wiggled with excitement as the nurses sang. Later he ate two pieces of cake.

Much later, he threw up. Seems chemo and birthday cake do not go well together.

Less than a month after my birthday, I cradled his breathless, bloated body in my arms and wondered how I'd ever live to see tomorrow.

I was not planning to have to live his August birthday without him. Nor mine.

Now, thirteen years later, I'm wrinkled. I might even have gray hair; I don't really know because I color it at least once a month. But the little boy is still four.

Each year on my birthday, his smile warms my heart as I recall the way he sat on his hospital bed, happy because his mommy was being treated to a cake with candles.

Each year I wish I could see that smile for real, and not just in my bin of recycled memories. When my birthday cake is sliced, I want to offer him at least two pieces.

Sweet Daniel, perhaps there's cake in Heaven. Perhaps the angels sing. Once I've wiped the tears from my eyes, I'll listen for your voice among them.

A Cup of Coffee

October, for me, will always be radiation month. My son Daniel was diagnosed with cancer in May, and by the fall, he was scheduled for radiation treatments every morning. For two weeks, after putting my six-year-old daughter on the school bus, my sons and I would make the trek to UNC-Hospital. After unbuckling both four-year-old Daniel and eleven-month-old Benjamin from their car seats, I would put Benjamin in a stroller. The three of us would enter the clinic. As we sat in the lobby, waiting for Daniel's turn for the tumor on his neck to be radiated, coffee in a Styrofoam cup, would be handed to me. I'd thank the hospital worker, an elderly man, and sip the hot beverage.

Soon Daniel would be called and taken into the small room for his treatment. Ben, usually content with a toy, and I'd wait in the lobby where I'd pray for all to go well. I also spent time thinking about buying winter clothes for Daniel; he'd outgrown all of his pants, and his next chemo treatments. I sometimes gave a little thought to my pregnancy; I was due in May.

While my thoughts during those chilly mornings changed, the coffee never did. Faithfully, each morning, the worker presented me with a cup. His name was Lawrence, although his name tag said Larry.

Daniel did get winter clothes, and a baby sister. But he never saw his sister as he died three months before her birth.

Now on October mornings, I think of that time at the clinic. Thirteen years later, I still remember the cups of coffee. I look back on that woman of thirty-five, pregnant, with a first grader, a toddler, and a cancer patient. I wonder how she coped. I do know that the kindness of a man who was once a stranger, continues to warm her spirit. He must have seen her coming that first day, fumbling with the front door, hair still damp from her hurried shower, and knew he had to help her in any way he could.

You never know how meaningful your acts of concern---even the simple ones---can be to someone. At the time you perform them, and, many years later.

September Reminds Us

When September rolls around, I look like any other haggled parent standing in the checkout with three kids. The shopping cart is filled with packs of pencils, note paper, crayons, markers, and tissues.

"Why do we need to buy tissues for school?" my kindergartener asked last year.

I pictured a whole class of five-year-olds with runny noses and was tempted to reply, "So kids won't use their sleeves." But I chose the logical, "For when your nose is runny."

My neighbor claimed it would be a busy year when she found out I'd have one in kindergarten, one in first grade and one in middle school. But not busy enough, I thought, and again resisted the urge to let her know that I was wondering what my fifth-grader would be needing for school this year.

My fifth-grader, Daniel, never passed fourth grade. Or third, or even first. He didn't get a school supply list. Instead he got a kit from the hospital with syringes and bandages, all highly sterile.

On Memorial Day Weekend, 1996, Daniel was three and diagnosed with neuroblastoma. After eight months of treatments, surgeries, prayers and hope, this bald-headed kid, who acknowledged he was a “Brave Cookie,” was ready to be a cancer survivor. But a staph infection entered his weakened body and we had to kiss him good-bye.

September—now meaning for me, not only back to school, but Childhood Cancer Awareness Month— has rolled around again and as I stand in line with my kids, I know why the supply lists include tissues.

Just the other day while joining other parents and children in the “shopping for school supplies frenzy,” a woman noticed the gold ribbon pinned to my T-shirt. “What’s gold for?” she asked. “I know that pink is for breast cancer.”

“Children,” I said.

Her puzzled look caused me to further explain. “Gold because our children are golden to us.”

I half expected her to show shock or horror, being one of the thousands who refuses to believe that cancer is the number one illness among children. Another person who has no idea that each year one in every 330 kids will be diagnosed with cancer before age 19.

I was ready for her to walk away from me down the aisle. Why should today be any different? Instead, she mouthed the words, “Did a child of yours . . . ?”

“Yes,” I said, avoiding her look as I grabbed a Curious George notebook. “A son who would be ten now. He died.” He loved Curious George; we'd read it ofen in the hospital.

When I did manage to catch her gaze, her eyes showed tears. They were blue, like my son's.

Then this woman—a stranger—touched my arm. “I am so sorry.” She smiled at my other three children. “They are beautiful. I’m sure your son was, too.”

I nodded, wiped my nose, and thanked her.

If you happen to see a mother wearing a gold ribbon on her shirt—the symbol of childhood cancer awareness—don't be afraid. Ask about the ribbon. The opportunity to talk will help with her healing, and might even give you new wisdom. Most likely, the mother will cry. Feel free to hand her a tissue. Although she has done it before, she probably shouldn't be using her sleeve.

(Borrowed from a piece written by Alice J. Wisler in 2002 and dedicated to all mothers who have to kiss their bald-headed kids "good-bye.")

Here we are again . . .

Summer is winding down and everyone is busy with school starting. Walmart's aisles are filled with overwhelmed parents and active children as pens, notebooks, and markers are tossed into shopping carts.

I wish I had a seventeen-year-old, wanting an over-priced binder and new clothes to wear to school. I wish that I had one more kid to send off in the mornings. One more child to ask each afternoon, "What happened at school today ?" so that I could hear him say, "Nothing."

Daniel would be seventeen tomorrow, starting his senior year of high school.

Instead of wishing him a good day, I will visit the grave and brush the twigs off of his headstone. Instead of buying him an iPod or a new cell phone, I'll purchase colorful helium balloons to send off into the blue sky.

On the attached note, I'll write as I have every year, Miss you, Daniel. So happy that you came into my life. I love you always. ~Mommy.

I wish I had a seventeen-year-old to sing Happy Birthday to.

Instead, it will be another birthday without him.

Seems after thirteen years of watching balloons lift into the summer air, I would be calloused and used to this. But every birthday, it breaks another piece of my heart.

Spitting watermelon seeds

The Fourth of July, our country's independence day, is nearly here. What comes to mind besides the anticipated fireworks, food and parades? Watermelon, and watermelon seeds.

Actually, it all goes back to my son Daniel. He was confined to the hospital July 4, 1996, getting his monthly chemo infusion. A friend brought a large watermelon when she and her mother came to visit.

Daniel was excited to have his own watermelon. We cut slices and he spit the seeds at this nearly-thirteen-year-old friend. The friend later told me she hadn't the heart to spit seeds at a cancer patient.

After we had our fill, we stored the watermelon in the bathtub in the bathroom connected to Daniel's room.

The Fourth of July will always remind me of a little bald-headed boy with an infectious laugh who loved watermelon almost as much as he loved his siblings and parents.

Daniel did not live to see another Independence Day.

Recycled Watermelon

Recycled Watermelon

(In memory of Daniel, age four)

He was given the watermelon
on the Fourth of July
It weighed more than he -
smooth skin
shining in his hospital room
like the skin on his head

He let the juice run down
his chin and onto the sheets,
laughed, and spat
tiny black seeds
with life from lungs
that would later stop

so we laughed with him
and the seeds sailed
as far as we could make them fly
believing that determination
and the right doctors
would conquer all

In the end we are here
reminded of yesterdays
and a little boy
tales of watermelon
retold, embellished, recycled
as long and as far as our lungs can cry.


~ Alice J. Wisler