Burritos, Buddha & Baggage

September 30, 2011 at 11:20 pm | Posted in Grief, mourning, silver lining, twins | 7 Comments
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I have been trying to move past the fact that there may never be an answer to what caused Sawyer’s death.  It is hard to let go.  A moral from one of the twins’ books has been helping me with this process.  The twins’ great grandparents recently gave them a book call Zen Shorts by Jon J. Muth.  Have you ever heard the Buddhist tale about the Monk with the Heavy Load?

One day two traveling monks reached a town and saw a young woman waiting to step out of her sedan chair. There were deep, muddy puddles and she couldn’t step across without getting mud on her silk robes. She impatiently scolded her attendants, who were carrying heavy packages.

The younger monk walked by the young woman without speaking. But the older monk stopped and picked her up on his back, carrying her across the mud. Not only did she not thank the monk, she shoved him out of her way when he put her down and scurried by him.

As the two monks continued on their way, the younger monk was brooding. After a long time, he finally spoke out. “That woman was so rude but you picked her up and carried her! She didn’t even thank you.”

“I set the woman down hours ago,” the older monk responded. “Why are you still carrying her?”

Letting go does not mean forgetting Sawyer or Jake.  It means moving forward.  It will not always be a straight path.  Luckily, I have some little monks with me on this journey.  Here they are in burrito pose (or more commonly known as shavasana):

Namaste.

Handprints & Hope

September 24, 2011 at 11:58 pm | Posted in Grief, silver lining | 3 Comments
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Thank you all for the kind comments.  I appreciate them more than I can express in words.  As I have done in the past, I keep reusing the word hope.  Maybe if I write it enough times I will have more of it.

When I write I describe my life without Jake and Sawyer.  They are never far from my thoughts but I do live my life.  Some of the time I am acting and some of the time I am happy, sad, angry and all the other emotions that life throws at us all.  I am trying to live.  I would do anything for a life with all 4 of our children but I do not have that option.  So, I will just do my best.

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
                                                                                     – – “For Good” Lyrics from Wicked

Hats & Hope?

September 20, 2011 at 11:38 pm | Posted in Grief | 11 Comments
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I had been hoping for an answer to why Sawyer died.  And while I was hoping, I wanted an answer to why Jake died.  There is no answer today.  There might not be an answer tomorrow.  Or ever.  I was hoping that I could fight against whatever caused the deaths of our babies.  I could raise awareness.  Help other families.  Now I do not know what I am fighting against.

Perhaps in the case of Jake it is prematurity and hydrops that I need to fight.  Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means.  It seems hard to fight against the unknnown.

I have readjusted what I hope for in the past.  It is once again time for me to change my hopes.  I have to stop hoping for an answer.

I will continue to be so thankful for everything I do have.

I will continue to be inspired by parents who have turned their grief into action:

The Ronan Thompson Foundation
Layla Grace Foundation 
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams

I hope to have the strength one day to also turn my grief into action.  Writing and speaking about Jake and Sawyer is a step in the right direction.  I just have to figure out what is next.  Any suggestions?

NICU Nurses

September 16, 2011 at 11:48 pm | Posted in Grief, hospital, mourning, NICU, parents | 6 Comments
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This week I, along with 3 other mothers, spoke to group of NICU nurses.  The nurses have bereavement training.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital.   I listened to the other women recount their bittersweet experiences.  I spoke about mine.  This is the second time I have spoken to a group of NICU nurses.   I am very thankful that this group of people are able to be NICU nurses.  I never could do it.  I am so amazed by their skill and compassion.

The other women who spoke turned their grief into action.  One of the women and her husband started a grief group at their church.  Another women writes a blog.  The third woman started a group called Rock Goodbye Angel.   The purpose of the group is to “encourage families who have lost a baby to regain hope by caring for them during their time of grief so that they know they are not alone.”

I think that the 4 of us gave the nurses some helpful feedback.  A few suggestions came out of the discussion:

  1. Hospital staff (nurses, chaplains, etc.) perhaps do not need to bring up topics such as funeral arrangements and autopsies while the baby is still alive.  Parents of babies in the NICU are trying to focus on hope and survival.
  2. Inform everyone in the hospital when there has been a death so before they come into your hospital room they already know.  This way when the person who comes to empty the trash they will not ask how the baby is doing.  Our hospital puts a dove outside the door to indicate tha the baby has died.
  3. It would be great if there were separate entrances and exits for parents whose baby has died.  Waiting in the wheelchair after being discharged from the hospital all the mothers are in the same area.  It was excruciating leaving Jake in the hospital and waiting with happy new parents and their babies did not help.  On the flip side, when I left the hospital with the twins, I was waiting in the wheelchair for Evan to pick us up.  I was sitting next to a mother with empty arms.  I knew what that meant and my heart broke for her.
  4. Continuing bereavement training is helpful for caregivers, friends and family.

“Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not
grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured. These tears lead directly to introspection.”  Leon Wieseltier, The New Republic’s literary editor.  (sent to me by my sister-in-law Melanie – thank you!). 

Dark Days

September 12, 2011 at 11:54 pm | Posted in Grief | 6 Comments
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The email from Sawyer’s pathologist did not change anything.  However, I somehow feel like I have been catapulted back to the first few months after Sawyer died.   All the familiar feelings are back.  Sleeplessness.  Frustration.  Disbelief.  Sadness.  Guilt.  Desperation.  Anger.  Hopelessness.  Worry.

Life will go on.  I will go with it.

“The world breaks everyone
and afterward
many are strong at the broken places”

   Ernest Hemingway (A Farewell to Arms)
This quote was sent to me years ago in
a letter from my mother’s best friend
who I like to call my friend now too.

Anniversaries (again)

September 10, 2011 at 3:44 pm | Posted in Death, father, Grief, mother, mourning, parents | 4 Comments
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The tragedy of 9/11 and its’ anniversary are kinds of grief.   It is of course, an enormous source of grief for all of the families and friends who lost loved ones.  It is also the kind of grief in which you realize that the world as you knew it will not ever be the same.

Hurricane Katrina hit New Orleans the week that Jake passed away.   A very close friend of mine took her 5-year-old son in for his check up and the pediatrician found a rare heart condition.   My grandmother had died.  I felt like the world was coming to an end.   So, I asked the rabbi who presided at Jake’s funeral about the possibility that the world was ending.   He replied with an analogy.   He said that it is like when you decide you are going to buy a certain kind of car.   Once you make the decision you start seeing the car every where.   So, my take away from his explanation was now that I was grieving I would start to see grieving every where. . . Turns out you don’t have to look too far for grief in this world.   The record 7.0-magnitude earthquake hit Haiti shortly after Sawyer died.

I know that 9/11, where close to 3,000 people died; Hurricane Katrina, where 1,500-1,700 people died; and the earthquake in Haiti, where almost 230,000 people died are tremendous losses compared to the death of two babies.   But, those babies were mine.   And, my world will never be the same as it was before they had died.

There is not a contest for who has the most grief.   I am not trying to compare my losses to these catastrophic tragedies.   There are not any winners here.  In grief we have all lost.   However, there is still the next day and the day after that.  And one day, there is a point where we will realize that our loved ones are dead but we are still alive.

I posted the above last year at this time.  On the anniversary of 9/11 and every day, my heart, prayers and thoughts go out to not only the victims but to those who they left behind in this world. 

Unknown & Unchanged

September 8, 2011 at 9:24 pm | Posted in Grief, mourning | 17 Comments
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Nothing has changed.  If you had spoken to me (or I had written) yesterday everything would basically be the same.  Jake and Sawyer died.  The twins are healthy.  However, today we received an email from Sawyer’s pathologist.  We have waited for over a year for the results of the Mayo clinic study which Sawyer is a part of.  The study tests for cardiac channelopathies, such as long QT.

Sawyer’s doctor wrote, “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”

I always knew the study might be inconclusive.  However, I hoped that there would be some sort of medical answer.  An answer that could somehow help me rationalize and comprehend Sawyer’s death.  If there was some known medical condition we could have the twins tested for it.  As of now there is no answer.  Maybe there never will be.  No one ever promised that life would make sense.

The cause of Sawyer’s death is unknown.  The facts are the same as they were yesterday.  Nothing has changed or has it?

Numbers

September 2, 2011 at 8:20 pm | Posted in mourning, silver lining | 5 Comments
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Somewhere along the path of life I started to pay attention to numbers and dates.  I believe that part of my interest is because I am searching for answers to unresolved questions.  I want there to be explanations where there are none.  Why did Jake and Sawyer die?  There are no answers or explanations that I can understand.

Jake was born 14 weeks early.  He was born on the 14th.  He weighed 2 lbs, 14 oz.  He was 14 inches long.  Jake died at 6:14 am.  The number 14 seemed to be such a predominant theme in his short life I was sure that it held some answers.  Some one once told me that it is not the number 14 but the sum of 1 and 4, or 5.  So far I have not figured out anything based on the number 14 or 5.

The twins’ original due date was the day that Jake died.  Of course, they did not make it to that due date but instead they were born on the 28th.  It seemed like the right day because 2 x 14 = 28.  I know these are all most likely just happenstance.

My most recent numerical coincidence is from my last post, 99!!.   I wrote to just wish my grandfather a happy 99th birthday.  Oddly, it was my 99th post.  So this is my 100th post!

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