Wrong Words

July 22, 2011 at 6:18 pm | Posted in Grief, mourning | 6 Comments
Tags: ,

I like to think the deaths of Jake and Sawyer have made me sensitive to grief.  However, I catch myself asking “how are you?” to bereaved people.  As soon as I say the words I want to take them back.  I know how hard that question is to answer when the world as you know it no longer exists.  I wish I had magic words to take away the pain.  I cannot think of any such words so I am borrowing the words of others. . .

Ways of helping grieving people are as limitless as your imagination.

  1. All that is necessary is a squeeze of the hand, a kiss, a hug, your presence. If you want to
    say something, say, “I’m sorry” or “I care.”
  2. Offer to help with practical matters: e.g., errands, fixing food, caring for children. Say, “I’m going to the store. Do you need bread, milk, etc.? I’ll get the.” It is not helpful to say, “Call me if there is anything I can do.”
  3. Don’t be afraid to cry openly if you were close to the deceased. Often the bereaved find themselves comforting you, but at the same time they understand your tears and don’t feel so alone in their grief.
  4. It is not necessary to ask questions about how the death happened. Let the bereaved tell you as much as they want when they are ready. A helpful question might be, “Would you like to talk? I’ll listen.”
  5. Don’t say, “I know just how you feel.”
  6. The bereaved may ask “Why?!” It is often a cry of pain rather than a question. It is not necessary to answer, but if you do, you may reply, “I don’t know why.”
  7. Don’t use platitudes like “Life is for the living,” or “It’s God’s will.” Explanations rarely console. It is better to say nothing.
  8. Recognize that the bereaved may be angry. They may be angry at God, the person who died, the clergy, doctors, rescue teams, other family members, etc. Encourage their anger and to find healthy ways of handling it.
  9. Be available to listen frequently. Most bereaved want to talk about the person who has died. Encourage them to talk about the deceased. Do not change the conversation or avoid mentioning the person’s name.
  10. Read about the various phases of grief so you can understand and help the bereaved to understand.
  11. Be patient. Don’t say, “You will get over it in time.” Mourning may take a long time. The bereaved need you to stand by them for as long as necessary. Encourage them to be patient with themselves as there is no timetable for grief.
  12. Accept whatever feelings are expressed. Do not say, “You shouldn’t feel like that.” This attitude puts pressure on the bereaved to push down their feelings. Encourage them to express their feelings — cry, hit a pillow, scream, etc.
  13. Be aware that a bereaved person’s self-esteem may be very low.
    Author unknown

Perfect Parenting?

June 26, 2011 at 10:50 pm | Posted in Grief, mourning, parents, twins | 8 Comments
Tags: , , , , ,

Did you ever see the movie Sliding Doors?  Gwyneth Paltrow, pre country music singing career, plays a woman whose entire life changes based on catching a train.  Her life is portrayed in the movie both as if she caught the train and as if she did not. 

I wish I could know what kind of parent I would be if Jake and Sawyer had not died.  I wish I could see my life both ways, in parallel.  And okay, I wish I could just pick the life that did not include either of them dying.

However, here in reality I know I do not get those wishes and I can not watch both options in parallel (nor will I become a country music singer).  So I must try to be the best parent I can be and accept that I will not be perfect.

Alice Wisler wrote Parenting Through a Glass Partition — After the Death of a Child.   Her son Daniel, died from cancer treatments in 1997 at the age of four. She wrote: 

“At the fast food restaurant, my children laugh in the play area as I sit drinking coffee behind the glass partition that separates the play area from the dining section. While I have hugged them so tightly their tonsils could pop out, I am still, much of the time, finding myself watching them from a distance. They are mine but so was Daniel, and in the course of a moment I know they could be gone, as he is.” 

After Jake died I could not imagine being a parent to a child who came home with us.  After the twins were born and did come home, it dawned on me that I was so focused on making sure that they were not premature that I had not considered actually being a parent.  Parts of me want (and may always want) to wrap them up in a bubble wrap and protect them from the world.  The wiser, perhaps more jaded part of me knows that no matter what I do I will not be able to protect them from every thing.

Sawyer was full term but did spend some time in the NICU.   I did keep myself at a distance.  I could not visit the NICU for long.  Once Sawyer was released from the NICU I felt incredibly guilty that I did not visit him more.  I also felt incredibly lucky that he came home with us. 

Being a parent (bereaved or not) is bittersweet, frustrating, exhausting and amazing all at the same time.  Would I be more patient, appreciative and understanding if Jake and Sawyer were here?  Would I be less bitter and more sweet?  Has grief made me a more aware and loving parent?  I will never know.  Right now all I know is that I will keep trying.

Father’s Day

June 19, 2011 at 10:46 pm | Posted in father, Grief | 4 Comments
Tags: , , ,

A grieving father is often refered to as a “forgotten parent.”  As I quoted Harriet Sarnoff Schiff, in this post nowhere in the history “of sex discrimination is there a more glaring injustice than that thrust upon a bereaved father.”  It is hard to find resources for a bereaved father.  However, I did come across the Grieving Dad’s Project, which was created specifically to assist father’s with their journey through grief.

This week I helped the twins make Father’s Day cards for Evan.  They made him art projects too.  I can not help Jake and Sawyer wish their dad a happy father’s day so here is my best attempt:

A Father’s Day Wish From Heaven

Adapted from Jody Seilheimer poem
A Mother’s Day Wish From Heaven

Dear Mr. Hallmark,
We are writing to you from heaven,
and though it must appear
A rather strange idea,
We see everything from here. We just popped in to visit,
your stores to find a card
A card of love for our father,
as this day for him is hard.
There must be some mistake we thought,
We saw every card you could imagine
Except we could not find a card,
from a child who lives in heaven.

 He is still a father too,
no matter where we reside
We had to leave, he understands,
but oh the tears he’s cried.
We thought that if we wrote you,
that you would come to know
That though we live in heaven now,
We still love our father so.

 So you see Mr. Hallmark,
though we no longer live on earth
We must find a way to remind him
of his wondrous worth.
He needs to be honored,
and remembered too
Just as the children of earth will do.

Thank you Mr. Hallmark,
We know you’ll do your best
We have done all we can do;
to you I’ll leave the rest.

Find a way to tell him,
how much he means to us.

Happily Ever After and Hope

June 2, 2011 at 11:11 pm | Posted in Death, Grief, silver lining, twins | 5 Comments
Tags: , , ,

Thank you so much for all the extremely kind and wise comments on my last post.  I did not mean to sound more out of sorts than usual.  Nothing significant has changed.  Jake has still been dead for 5 years and 9 months.  Sawyer has still been dead for 18 months.  I have many good things in my life – for which I am very grateful and happy.  I just always believed my life would have a “happily ever after” ending which did not include burying 2 children.

Now I need to adjust my expectations.  I have done this before and I am sure that I will again.  For now I am going to try to be like Jimmy Buffett and “. . . live happily ever after, every now and then.”

This slideshow requires JavaScript.

Hope, Hair and Happiness

May 28, 2011 at 11:41 am | Posted in Grief, mother, silver lining | 7 Comments
Tags: , , , , ,

After Jake died I did not brush my hair. I did not change my clothes. I did not shower. I am not sure how many days I went on like this but it was quite a few. Finally, some friends strongly encouraged me to make a hair cut appointment. I am pretty sure someone ended up making the appointment for me. And, driving me to the salon. I remember feeling better after the appointment. Thank you to my friends who had the good sense to have a hygiene and hair intervention.

Throughout my life I try to volunteer. The week after Jake died Hurricane Katrina hit New Orleans. After Sawyer died the earthquake devastated Haiti. I wish I had the emotional and physical energy to donate my time to both of these causes. However, when I  have not had the energy or the time I have donated my hair.  Especially after talking to my mother-in-law about losing her hair I realized how important it is to have the option to wear a wig.

This week I donated my hair for the 3rd time to Pantene’s Beautiful Lengths.  Here is my crazy long hair before:

I donated 9 inches of hair:

Here is my hair after:

It takes 6 donations to make one wig.  So I have officially donated 1/2 a wig.

A Birthday, A Wedding and 2 Funerals

May 24, 2011 at 9:52 am | Posted in Grief, silver lining | 9 Comments
Tags: , , ,

Today is my brother’s birthday.  We are 2 years and 2 months apart.  I have been told over the years that he was very excited when my parents brought me home for about 2 weeks – at which point he asked if they could return me.   He spoke at Jake’s funeral when Evan and I could not.   He has called me almost every day since Sawyer died.  He has talked me through times that I know I could not have gotten through without him.

I look at myself in this picture of us when we were 2 and 4.  If I could, would I warn myself about the path that my life would take?  Would I tell myself to make different decisions? I know that life has not turned out the way that I had imagined it would when I was a child.

My brother was gracious enough to share his birthday with Evan and I.  The place that we wanted to get married only had 1 date before one of Evan’s brothers left for the Peace Corps in Armenia (but that is a different story).

Eight years ago today we were married. Is it really possible that in 8 years we have had 4 children?  We have had 2 funerals.  One for our oldest son and one for our youngest.

If I could go back to talk to myself on my wedding day would I warn myself about the heart-break in my future?  Would I tell myself that I would bury not 1 but 2 of our children?  I honestly do not know the answer to these questions.

One of my favorite English teachers made us memorize the Robert Frost’s poem The Road Not Taken:

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.

I am fortunate enough that the roads I have taken (while they may have not been the easiest) I have had Evan and my brother by my side.

SUIDS, SIDS & Sawyer

May 20, 2011 at 8:59 am | Posted in CHD, Grief | 8 Comments
Tags: , , ,

Before January of 2010 I was blissfully unaware that the term SUIDS (Sudden Unexplained Infant Death Syndrome) even existed.  I had heard of SIDS but my experience with it was limited to watching stories about fictional families in Lifetime movies or reading about real, unknown families in newspaper articles. 

Until December of 2006,  SIDS did not exist in my real world.  Our next door neighbor called to let us know that another neighbor’s baby had died.  It was determined the cause of death was SIDS.  Evan and I went to talk to the parents.  Their 2 toddler boys were running around in circles as we shared Jake’s story and they told us about their baby. 

Our neighbor’s baby was full term.  She was 3 months old.  She had been to the pediatrician the day before.   She had been taking a nap.  She did not wake up.  I did not know that Jake would die.  However, I knew he was very premature and he had hydrops.  I knew that he was in the NICU and there were complications.  Our neighbor thought she was waking up her baby to take her to her first Christmas party.

December of  2009, Sawyer did not wake up. 

It was determined that Sawyer’s cause of death was not SIDS because of the coarctation of his aorta.  In order for SIDS to be determined the cause of death the baby must be 100% anatomically correct.  The coarctation while it was not narrow enough to cause death, it did lead to the possibility that he had cardiac channelopathies. 

I know that I am not the best at explaining these medical terms.  The following is a better explanation from the CDC:

Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose and cause of death are not immediately obvious prior to investigation.

SUID posible causes: Poisining or overdose, SIDS, Accidental suffication, Unknown, Infections, Inborn errors of metabolism, Cardiac channelopathies.Each year in the United States, more than 4,500 infants die suddenly of no immediately, obvious cause. Half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.

Sudden Infant Death Syndrome (SIDS)

Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.

SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States

Sawyer’s Story (part 16): Becoming a Stalker

May 10, 2011 at 11:08 am | Posted in Death, Grief | 3 Comments
Tags: , , ,

We had missed the first call from the medical examiner.  She had left a message.  I called back.  I had missed her for the day.  I called again the next day.   And the next.  The Tuesday after Sawyer died I spoke to one of the two pathologists who had performed Sawyer’s autopsy.  I spoke to Dr. R.  She told me the preliminary findings and explained that it would be a few weeks before all the test results were back. 

Dr. R. proceeded to tell me that Sawyer had a coarctation of his aorta.  She explained that this is a narrowing of the aorta.  She gave me the measurements.   I asked frantically if there was some way that we could have detected this.  Did we miss a symptom or a sign?  Could we have prevented it?  If it was a heart defect than that would mean that it was not a virus or something else that I could have let Sawyer be exposed to.

After hanging up the phone with Dr. R. Evan called our pediatrician.  He told him the preliminary results.  Our pediatrician explained to us that the measurements of the narrowing in Sawyer’s aorta were small but Sawyer and his heart were small.  I was now wishing that I could understand more of these medical terms.  More than once when Jake was in the NICU I cursed myself for going to law school instead of medical school

I tried to call Dr. R. back.  She was not in her office.  I left a message.  She did not call back the next day so, I called again.  And again.  I contemplated how many times a day I could call her.  I decided to keep calling but just leave messages once a day.  Two painfully long weeks went by.  I began to think about going to the medical examiner’s office in person. 

I asked the receptionist what she thought would be good times to call.  I called at the times she suggested.  I called at other times.  I jumped every time our phone rang hoping it would be her.

“Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We misconstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. . .” —  Joan Didion (The Year of Magical Thinking)

The Unveiling

April 26, 2011 at 6:40 am | Posted in Death, Grief, traditions | 5 Comments
Tags: , , ,

Since ancient times, it has been the Jewish custom to mark the grave with a stone. After Rachel died, “Jacob erected a monument on Rachel’s grave” (Genesis 35:20). The marker/monument serves to identify the grave so relatives will find it when they visit, honor the memory of the deceased, and identify a place of burial.

It is also the Jewish custom not to place a headstone at the time of burial.  Instead an unveiling is the formal dedication of the headstone. The unveiling usually takes place 12 months after the funeral as a way to mark the end of the formal mourning period. However, the unveiling may take place any time after the first 30 days after the funeral.

June, 2006.  We had an unveiling for Jake 10 months after the funeral.  We made this decision in part because the Rabbi who presided at Jake’s funeral was moving back to California.  Evan and I both wanted the same Rabbi to preside over Jake’s unveiling.  So, Evan agonized over what to write on the headstone before ordering it.  He picked out the font and the border.  I was numb.  My mind did not seem to have the ability to think of anything to write on Jake’s headstone.  Evan did it all and then showed it to me.  We  finalized it and placed the order. 

We knew the headstone would come in a week or 2 before the ceremony was scheduled to take place.  I thought for some reason we would get a call to let us know it had arrived.  There was not a call.  I was still going almost every day to the cemetery.  Evan went with me sometimes and other times I went alone.  One day, we walked up the hill to Jake’s grave and there it was – his headstone.  It was covered with a sheer cloth.  The pit in my stomach which had been there for the past 9 months grew bigger.  We read the headstone over and over.  The dates were wrong.  The font was wrong.

Evan called the cemetery’s office and explained the mistakes.  They assured us that it would be corrected immediately. 

Our families arrived in town for the ceremony.  The day before the unveiling Evan and his mom went to the cemetery.  The sheer cloth was over the headstone.  They read it carefully – JACK.  Evan was beyond furious.  He and his mom went to the office.  The original wrong headstone was still there.  It at least had the right name so it was put back in for Jake’s unveiling.

I do not remember much about the ceremony.  I remember it was hot.  Our family and close friends were there.  Our 1-year-old niece and nephew were also with us and waddling around the cemetery. 

Today, 2011.  It is 16 months since Sawyer died.  In a few days it will be 16 months since his funeral.  We have not ordered a headstone.  We have no plans for an unveiling. Neither of us seem to have the ability to think of what to write on another headstone. I hope to write a post before the end of this year to tell you about Sawyer’s unveiling. . .

Why I Write

April 20, 2011 at 11:46 pm | Posted in Death, Grief, silver lining | 7 Comments
Tags: , , , , , ,

I wrote on the About  page that I began this blog to hopefully assist others on their journeys and to continue the purpose of Jake and Sawyer’s lives.  Now that I have been writing for some time my purpose has become a little more clear.

Not many people met Sawyer and even fewer met Jake.  I feel like in writing about our two baby boys  more people are able to “meet” them.  I never want them to be forgotten.  I do not have to speak about them all the time.  I do not feel like I am keeping a wound open by writing about them.  Rather, I want to share their stories.  I want the twins to know their brothers.  I do not want to forget the details.

I am still not so clear on some of the other purposes I have for writing.  Maybe one day I will start a non-profit.  I have great admiration for bereaved parents who are very active in the March of Dimes and for these parents:

Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

Maybe one of the twins will grow up to be a real doctor.  Maybe one will find a cure for the cause of Jake and/or Sawyer’s death. 

Or maybe someone will read this blog and find something that will make their life some how easier.   If nothing else I am going to keep writing to help myself.  Sawyer and Jake are dead.  I am alive and I must keep on living.

In three words I can sum up everything I’ve learned about life.  It goes on.  ~Robert Frost

« Previous Page — Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.