Twenty Years of Keeping On

When Daniel died in 1997, my pain was bigger than God.  People would tell me that with time it would ease, or that they knew how I felt because they had a cat die and how awful that was.

One woman called me every other day to tell me that God needed Daniel.

"Just think," she said as I clutched the receiver, "God needed another flower in his garden and he picked Daniel."

After a few days, when the phone rang and her voice came on the answering machine, I didn’t pick up.

I washed dishes, fed Benjamin apples and bananas, read him stories, and when he was watching Sesame Street, I'd sneak upstairs into Daniel’s room.  I’d breathe in the familiar smells it had accumulated: hospital soap, bandages, iodine.  But the strongest scent of all was my hollow loneliness. It grabbed me in the gut and pulled me to the floor.  Often I would let myself cry.

And that woman would keep calling to offer her words.

But I didn’t return her calls.  I felt that since my pain was so large and consuming and I was six months pregnant that she would understand that I didn’t have the energy to call her back.

Eventually she stopped calling me.

And I became grateful for answering machines because they were like secretaries, weeding out the calls I was unable to take.  Sometimes friends would call and I would stand by the phone and not answer.  I let their voices be recorded and that made me feel that I had some control of my vacant life.  I had a choice—to answer or not to answer. I grew more fond of the not to answer.

There were times I thought I was ready for Butner, the psychiatric facility off of I-85.  I could walk outside and almost smell the sheets.

I went to support group meetings with other people who would just break into tears, unable to finish sentences, people with ragged photos of their children that they shared so that the rest of us could say, "She is beautiful," even though the child had ears that protruded and was cross-eyed and her dress was too short or too long or too pink. It didn’t matter because eventually I knew I belonged with these people.

I belonged to these parents, who introduced me to words I had never been allowed to say.  Angry adults who taught me you can say damn, shit and hell in the same sentence and not be struck down or turned into a pillar of salt.  We sat around tables that were much too small to hold our grief and took turns saying our dead child’s name.

I seemed to go on and on with all the medical procedures about how Daniel had been diagnosed with a malignant tumor in his neck and how he’d been through chemo and surgeries and radiation and how a staph infection entered his body.  I had had little medical jargon in my vocabulary prior to his diagnosis and death and at these meetings I was using all I had learned.  I had no idea how long or short my turn was supposed to be I just knew that I had to tell my story.  I had to get it out.

Part of me hoped that as I talked, one of the bereaved parents would stop me and see that I had talked my way out of this horrible story and say, "Oh, no, he couldn’t have died from that, that isn’t medically possible.  Go home, your son is surely still alive.  Go home now."

And I’d leave the claustrophobic church basement and drive the 40 minutes down Glenwood Avenue to my home and sure enough, there Daniel would be sitting in front of TV watching The Three Stooges with David. And I’d be so excited and happy that I wouldn’t complain that it was 10 o’clock and that David should have already put Daniel to bed.

But even though I attended those meetings twice a month for two years, Daniel never came back.  No loop hole in his death was discovered. And pretty soon my heart knew what my head did, my son was gone from this earth and I was going to have to live the rest of my life without ever holding his hand again.  

And I would never know why.

I would write poems at the graveside and lift balloons into the air. I'd cry with other parents, speak at conferences, and raise my three other children and never know why Daniel didn’t get to be a hero and pull through the whole ordeal.

And I was going to have to adapt and adjust just like countless parents before me and just like thousands of parents would have to learn to do after me.

I was in this club that no one wanted to be part of, a club with rituals that no one understood except for the people in it, and a club that had no membership expiration date.  Until you die.   I would be thirty-seven, thirty-eight, forty, fifty, fifty-nine, gray, old, still showing dampened photos of a little boy who never grew up.

Sometimes when I’d be driving to the meetings, I’d think, what if I just rammed into the Mayflower truck in the lane ahead of me or just gunned the engine and took a leap off a cliff and died.  What if . . . ?  But then I knew I couldn’t do that to my kids, especially not to the baby because she was brand new and Daniel had told me when she was still in the womb the size of a raisin, and then even larger than that, giving me heartburn and kicking, that I was to take care of her.

So I’d follow the speed limit and take my eyes away from the Mayflower truck and keep going on.

For twenty years I've been keeping on.  Truth be told, it is either to keep going on or to roll up and die.

I choose life.  And I'm glad I did, and glad I do.

"Will I ever want to laugh again?" a young newly-bereaved mom asked me at a conference where I gave a writing workshop.

"Yes," I replied.  "You will be able to laugh again.  Trust me. And keep on.  You can do it. Where there is breath, this is hope."

"My friends don't understand," she said as she blew her nose into a tissue. "One calls me every week to tell me to get on with life."

"Do you have an answering machine?" I asked and then realized that we are in the twenty-first century. Quickly, I said," You don't have to answer your cell phone every time it rings, you know."

She nodded.  "I think I can do that."

But she's doubtful, I can tell by the hollowness in her eyes. I tell her I was there once, just as she is. Wondering, aching, unsure if I wanted to live or ram into the Mayflower truck.

She hugs me and we wipe our eyes.

I think she'll make it.

Many of us have.

 

A mama finds treasures in a duplo box

In my closet sits one duplo box filled with handwritten cards. The cards were for my little boy Daniel. The boy is now gone, but the cards written to him still remain.

When we moved from the house where Daniel lived, Daniel didn't get to go with us. But the yellow duplo box with cards did. A few of the cards he'd received were after hs first surgery before we knew the lump in his neck was cancer. Most were sent to him during the months he was treated at UNC-Hospitals. The duplo box had been where he'd stored all these cards, cards that shared hopes for his healing, prayers, and even birthday wishes.

It's been seventeen years since Daniel took his last little breath. Yet it was just yesterday when I, his mama, felt like I could conquer the box. I pulled out a few cards from kids who had been in pre-school with Daniel. I pulled out cards from church groups, missionaries, friends of mine, and Daniel's teachers and young friends.

This box might be silent to most, but to me it speaks. It speaks of love and hope and the kindness of others who took the time to write to my son. The box also says, this boy lived. He died at age four, but oh, yes, he lived.

One of the Precious Moments cards was from a girl who shared the same birthday month as Daniel. Her name is Sophie, she'll be 23 this year, and Daniel at age four called her "Tophie." Another card, made from construction paper, from a girl named Crystal, captured my heart for its simplicity. I have no idea who Crystal is, but if I were to ever meet her, I'd tell her thanks for being so bold to share her love for Daniel. Her words have brought joy to my day all these years later. Daniel was loved and he loved.

Now that I have conquered this yellow box, I'll continue to pull cards out and read, smile, and remember. And yes, I'll cry. For any mama who has lost a child to death, tears are never far.

When a mama walks her memory of tears . . .

Yesterday marked the beginning of the end. 17 years ago, Daniel went into a coma. His last words to me were, "Mommy, I just wanna go home."

Words can't describe the agony of what life was like for us at that time. And who would have thought that 17 years later, the disbelief of what he went through and what we went through would still cause me an intense pain. I feel I have been punched right in my heart.

The word shouts at me: Why?

Why didn't I cuddle him then? How could I have been so naive? The doctor and nurses couldn't find a pulse. I should have picked him off that bed in the cancer clinic that day and spent time hugging him and telling him how much I loved him and how I would miss him.

But I was naive. I didn't know.

I walked with them as they wheeled him into the ER. At six months pregnant, I tried to keep up. I was confident that they would be able to help him as they had over the eight months since his diagnosis.

How foolish I was.

I feel the sadness of that day and the days that followed. My veins are like ice. I can barely type. The enormity of that journey paralyzes me. I want to push those days aside, but I know that with each revisiting of them at this time of year that leads up to his February 2nd death, I learn something new.

His death continues to teach me.

So I take my own advice and write him a letter. The words come slowly, but they do appear on the computer screen.

Dear Daniel,

I was clueless.

I didn't know that you would ever leave me. It was not an option, so I didn't dwell on death. I believed you'd live. I believed you'd spring back up and be okay. Any boy who can climb up a bunk bed at age three, fall off and be undaunted should be able to defy anything.

I could kick myself for my trust that God would heal you.

That last sentence sounds sacrilegious.

But I won't delete it because it's true.

Yet, if I had let death be part of my thinking, would I have been any better off?

What would it have been like to live with the fear of death ever since your diagnosis?

I lived with hope and belief.

Should I kick myself for that?

Can I look at who I was then with the seasoned knowledge that I have now? Is that fair to that woman of 36?

Guilt. Regret. Remorse. If only . . .

I hope you know that if my love could have saved you, it would have.

But it was not enough.

You are home with Jesus now. Some place I hear is magnificent but my earthly mind is too little to comprehend Heaven.

On earth, you will always live in my heart.

Every year I go on a pilgrimage as I remember the days leading up to your death. It is my path of tears. Sometimes, I push aside the remorse, and just let myself bask in the person you were----energetic, beautiful, tender, lively, humorous, generous, and you and I both know it----downright exasperating at times.

Remember the time you poured baby lotion and glitter glue over a piece of paper and then opened a small box of Cheerios and stuck them to the paper? What a work of art! I should have kept it for the hospital wall of patient masterpieces.

We were all so weary living your cancer with you. But we were always hopeful.

Even when you breathed your last in my arms, I believed you would rise up.

We didn't call you Wild Boy for nothing.

I vision you, if you could, coming over to me to wrap arms around me and tell me, "Mommy, I love you. No regrets."

And perhaps that is what I will focus on today.

XOXOXOXOOX
Mommy

Time Heals? I Am Still Caught Off-guard

Here it comes . . .

After all these years, I didn't expect it to hit me. Hasn't time wiped away the surge of grief?

To another mother (one who gets grief because her son died, too) I wrote:

"The roller coaster ride is about to begin . . . Actually, it already has and for whatever reason, has caught me off-guard. Why do we think we can escape the memories of such sorrowful days? Why do we think that time takes care of restoring our eyes so that they will no longer shed tears? And oh, when other moms speak of trite scrapes and bruises their children have had, why do we still gasp at what we have endured?"

On a recent morning, seated among other moms, the conversation turned to kids and their childhood illnesses. I tried to listen, but when the comments were made of how bad one mom had had it, all I could think was: But your child was rescued. Your child lived.

Memories of Daniel's last days that led up to his death bombarded me as I tried to add to the topic without talking about his demise. I spoke of a time my husband and I got hepatitis A shortly after Daniel was born. How hard it had been to nurse him and hold him then. How weary it was to care for him and his older sister Rachel when my internal organs ached and I was the color of mustard left out in the sun.

But as I shared this bit of history, my heart was not fooled. My heart knew that story in comparison to Daniel's cancer-related death was a mere walk in the park.

Years ago I would have acknowleged my pain, making sure people knew of my son's death and the agony it brought. This day I didn't feel the need to. After all, these mothers knew of my loss. Surely, one of them would suddenly remember that I had watched my son breathe his last breath. Or even if they didn't mention it, that was okay.

I would be normal today. After nearly sixteen years since my child's death, couldn't I push the thoughts of rushing to the ER, of watching his bloated body aside? Couldn't I have a normal story to tell?

It didn't help that the day was drizzly. I drove home from the gathering with an acute awareness of the scar on my heart. I felt lonely, distant from those who knew not of the continual sorrow bereaved mothers face.

Yet, I was not lonely for long. Those who have also buried children gone too soon, were waiting to greet me in this wonderful world of cyberspace. Their virtual hugs and words of understanding gave me the consolation I needed.

And as I write in my new book, Getting Out of Bed in the Morning, "Bottled up grief can make our hearts heavy; sharing it with a friend, even the friend of a journal, can alleviate some of our confusion, frustration, or loneliness."

I am not a freak. I am not crazy. And I am not alone.

I am a mother who misses her Daniel.

Yes, even after all these long, long years.

And to me, that's what is perfectly normal.

~ Alice J. Wisler

To order a copy of Getting Out of Bed in the Morning, visit Amazon.

Update on the Sandy Hook Comfort Project: What does it mean to lose a child to death?

The outpouring for the families in grief and loss from the shooting at Sandy Hook Elementary School in Newton, CT has been amazing. People are eager to donate books as an act of love to those mourning the loss of loved ones.

Originally the plan was to send a book (Getting Out of Bed in the Morning: Reflections of Comfort in Heartache) to Sandy Hook for each family who had been affected by the tragedy in the loss of a child--young (student) or adult (teacher). That was a meaningful act of comfort, and thanks to each of you, that goal has been accomplished!

When I read again the message from Lisa Schorp (the woman with the vision who posted on my Facebook page last Saturday), I noted that she said it would be great to be able to send copies of my book not only to the families at Sandy Hook Elementary School who lost a loved one, but to all the families. I suppose I overlooked that part of her message because it seemed too big a goal.

This project has morphed. That is amazing to me. Thanks to the generous donations that have come from all over the USA and Canada, we can send more books. The local churches in Sandy Hook can use copies of Getting Out of Bed in the Morning for their libraries and others in the devastated community can benefit from a book on hope and healing in the midst of loss.

When do we send this gift of love? Although the media is consumed with reports of what is going on now in the Newton community, we know from past experiences that the "hype" will soon dissipate. Humans are like that. We tend to move from one news-breaking event to another.

But the families who lost loved ones are only at the beginning of their journeys . . . When a child dies, the world stops for a parent. The first weeks, even months, are like living in a fog. When that anesthesia wears off, the reality kicks in.

My child is gone. He is not coming back.

Ever.

Parents need help and support for the rest of their lives. I continue to cherish those who have walked this bereavement trail with me. It's been fifteen years since my son Daniel's death and I still yearn for his smile and hug.

Right now we plan to send the books after the first of next year.

Here is what we are looking at:

1. An autographed book with the name of each child who died for the child's family

2. One of my Songs from Heaven empathy cards with each book

3. A letter with the names and hometowns of each of the donors (that would be you all) for each family

Thank you, each one, for your donations to this Sandy Hook Comfort Project.

If others would like to donate, click on this link and scroll to the end of the post.

Guest Post about the death of a child

I usually have guest posts about grief and loss at my Writing the Heartache Blog, but wanted to share this piece on this blog today.


How to Cope With the Loss of a Child


Losing a child is just about any parent's worst nightmare. Unfortunately, I experienced this nightmare nine years ago. My son died unexpectedly, which made losing him even harder. Losing a child was the hardest thing I have ever gone through, and to this day I still struggle with the loss of my son. Luckily, I have a strong support group of friends and family, and over time, the pain has subsided considerably. Here are five ways that I was able to cope with the loss of my child, and hopefully they are as beneficial to you as they were to me.

*Support System*
I leaned heavily on my family and friends for years after my son died. I luckily, did not suffer from depression, and I think having such an outpouring support group helped tremendously. For the first month, my friends stayed over at my house, to keep my mind occupied and from going crazy. As painful as it was, I became closer to a lot of my family and friends after my sons death.

*Physical Health*
I will admit that in the first few months, I let my physical health suffer. I would advise anyone grieving over the loss of a loved one to avoid this mistake. I ate so poorly that my physical health was obviously deteriorating to anyone I came in contact with. This caused a further deterioration of my mental health, as I had no energy and it was as though I was trying to "feed" my depression (ironically). After the first few
months, I made sure to take walks on a daily basis and continue eating a healthy diet. Remember that poor physical health will affect all facets of anyone's life.

*Stay Busy*
Anyone who is grieving finds it difficult to stay busy - this is okay. After the initial month, I made it a point to stay as busy as possible. I started going back to the gym and even took a weekend trip to Las Vegas at the urging of my friends (after a few months). Grieving is natural, but when I started getting busy, I felt my mind clear up and a sense of normalcy returning.

*Tried & True*
I was lucky enough to find a wonderful support group for people who have experienced loss, and it was immensely helpful. I initially found message boards online where I communicated with other people who were also grieving. Eventually, I got up the nerve go visit to a local support group, where I was able to feel liberated when discussing my problems with people in the same situation. I am not religious, but a couple of people in the group found solace in their local church groups. When I found support, I
felt as though I was able to grieve and not be judged.

*Counseling*
On the recommendation of a friend, I obtained professional counseling. This helped me find happiness and meaning in other areas of my life. Although I did not take any medication for anxiety or sleep, my therapist did teach me some relaxation and breathing techniques. One on one counselling was tremendously helpful in my recovery, and I would recommend it to anyone who is grieving.

When I lost my son, my whole prospective on life changed. It took a couple of years for me to regain a sense of normalcy in my life. Remember, when grieving, do not be afraid to ask for help from family and friends. Without a support group, the process would have been more difficult. Though, I cannot say I feel perfect, life has improved as I have learned to cope.

Peter Rhimes is a contributing author at http://www.homeownersinsurance.org.

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