A Birthday, A Wedding and 2 Funerals

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

Small Steps

May 5, 2011 at 10:35 pm | Posted in Grief, silver lining | 4 Comments
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As I wrote about in this post I have great admiration for bereaved parents who continue the legacy of their children.   We have not yet started non-profit or a run.  However, we did participate in the March of Dimes walk last weekend.  We have walked almost every year since Jake died.  Our team had been called Jake’s Journey.  This year our team’s new name is Jake’s Journey and Sawyer’s Strides.  

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Thank you to all those who supported our team this year and in past years.  We appreciate your kindness and generosity.  I do believe that the March of Dimes is making a difference and saving babies. 

The walk we did started at the Mattie J.T. Stepanek park.  At the age of three, Mattie started to write poetry to cope with the death of his older brother.  Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy.  Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.

Mattie’s mother, Jeni, spoke before the walk.  I was able to meet her afterwards.  Her strength and courage is remarkable.  She continues to spread Mattie’s message of peace and hope.  I am going to do my best to share and honor Jake’s and Sawyer’s lives. 

Facing the Future

Every journey begins

With but a small step

And every day is a chance

For a new small step

In the right direction

Just follow your Heartsong

by Mattie J.T. Stepanek

Why I Write

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

Buddha’s Stories & Stomach Bugs

March 18, 2011 at 5:46 pm | Posted in Grief, silver lining | 9 Comments
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I have been having trouble writing.  In fact, I have had trouble concentrating on anything at all.  I know this is partly because I cannot seem to get the twins back on a normal schedule.  I do not know if they are off because we have been away, daylight savings time or a stomach bug.  Regardless of the reason, there have been some bumpy days (and nights) at our house.

In one of my attempts to avoid the meltdowns of 2 cranky 3 year olds I grabbed a book.  It turned out to be the Kindness A Treasury of Buddhist Wisdom for Children and Parents by Sarah Conover.  We were sent many books after Jake and then after Sawyer died.  At the time I could not read most of those books.  However, the other afternoon I found myself reading these short stories to the twins.  One of the stories was about a woman named Kisa Gotami.  The following is a cliff notes version of the story:

After losing her only child, Kisa Gotami became desperate and asked if anyone could help her. Her sorrow was so great that many thought she had already lost her mind. Someone told her to find Buddha. Buddha told her that before he could bring the child back to life, she should find mustard seeds from a family where no one had died. She desperately went from house to house, but to her disappointment, she could not find a house that had not suffered the death of a family member.

Kisa returned to speak with Buddha and he asked for the mustard seed.  Kisa replied, “I am done looking for the mustard seed.  I know that in the whole city, in the whole world, there is not one family, not one person, free from the certainty of death.  It is the way of all living things – we must at some time leave one another.”

Kisa went on to say, “I felt terribly alone in my grief, but now I know that there are many others who have lost what they most cherished.  We must help each other.”

Buddha helped Kisa come to terms with bereavement.  He taught her compassion.  I do not know that I will ever understand why Jake and Sawyer predeceased me or why Evan’s mom died so young.  Maybe it is so that I will learn to be more compassionate.  Maybe it is so that I will help others.  Maybe I will never know. 

I do know that I will keep reading this book.  Who knows, Buddha could have some wisdom to share about bumpy days/nights and stomach bugs.

Home from the hospital

December 1, 2010 at 4:04 pm | Posted in silver lining, transient tachypnea, twins | 6 Comments
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The rest of our stay in the hospital was uneventful.  Sawyer stayed in the room with us.  He and I both got checked out every day.  The doctors and nurses reassured us that transient tachypnea was common in c-section babies and that Sawyer was healthy.  In fact, I asked anyone who walked into my room about transient tachypnea.  If the person I was asking had heard of it before the answer was the same.  It is not life threatening.  It is common.  Sawyer would be fine.   

We were both released to go home on that Saturday.  My parents had been staying with the twins.  I had never been away from them for so long.  I could not wait to get home and introduce Sawyer to his big brother and big sister.

Bringing Sawyer home

Sawyer is home!

Once we were home I had allowed myself to enter back into the land of believing that everything would be ok.  Sawyer was perfect.  He was a full term baby.  He had been released from the NICU.  He was fine.

A certain innocence was lost after Jake’s diagnosis and death.  The belief that I had that I would get married, have children and live happily ever after was shattered.  I can’t say exactly when but some time after Jake’s death I began to have hope again.  I hoped for days that were not so dark.  I hoped for more children.  Again, it did not take the path I thought it would but I did get pregnant with the twins and with Sawyer. 

I had convinced myself that if babies were not premature that they would live long happy lives.  I let myself hope and believe that we would raise Sawyer.  I had the false sense of security that Sawyer would lead a long happy life.  I let my guard down.  I let myself believe that we could not possibly bury another child.  Life could not be that cruel – could it?

Thanksgiving

November 25, 2010 at 10:04 pm | Posted in Death, silver lining | 10 Comments
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Last Thanksgiving we had just brought Sawyer home (I will go back and finish writing his story, I promise).  This Thanksgiving is bittersweet.  I suppose every day is bittersweet but holidays and anniversaries can be harder.   

I am so very thankful for family and friends who have stood by us during the best and worst of times of our lives.  I am certain that I would not be able to get through these days alone.

I am thankful for our silly twins and their father.  

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I am very thankful for the time that we did have with Jake and Sawyer.  However, there has always been more – I have had a feeling of gratitude that I have not been able to articulate since Jake passed away.  It is very hard to be grateful that your son (or now in our case sons) have died.  The feeling that I want to describe is that I have been so thankful that Jake and Sawyer never knew the hardships which life can bring.  I would give anything to have had them experience more of life than they did.  I was not successful with making that bargain.  Instead, I find comfort and I am thankful that all they ever knew in their too short lives was love.

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