Mixed Up Mother’s Day

May 8, 2011 at 10:20 pm | Posted in Death, Grief, mother, traditions, twins | 7 Comments
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The definition of a mother is “a woman who has, conceives, gives birth to, or raises a child.”

I am so lucky that I woke up this morning to our two happy twins saying “Happy Mother’s Day!” to me.   I am also so fortunate and grateful that I was able to call my mother to wish her a happy Mother’s Day.  I know that there are people whose mothers, grandmothers and/or children have died.  I know that this day can be challenging on many levels.

As I have written about before, I often silently tell myself to “remember the past, hope for the future but live in the present.”  No matter how many times I repeat this saying I cannot help but to think about past Mother’s Days.  .  .

Mother’s Day 2005 – I was pregnant with Jake.  We spent the day with my mom and my grandmother.  My brother, sister-in-law and our 10 month old nephew had the whole family over to their house.  We had not been for the nuchal screening test yet.  I was blissfully ignorant and happy.

Mother’s Day 2006 –  I was in a no (wo)man’s land of mothers.  I was a mother with no child to care for and raise.  Jake had been dead for less than a year.   Evan and I went to the cemetery.  We planned Jake’s unveiling and hoped for the possibility that Jake would one day have a brother or a sister. 

Mother’s Day 2007 – I was pregnant with the twins.  I still felt like I was living in a no (wo)man’s land of motherhood.  Jake had been gone for nearly 2 years.  We went to the cemetery.  We had gone for an OB appointment the Friday before Mother’s Day.  Our OB, who was one of the few people who met Jake, said to me at the end of the appointment that I should be really happy because I was now going to have my first official Mother’s Day.  I still remember how those words cut through me like a knife.

Mother’s Day 2008 – The twins were 10 months old.  According to anyone’s definition I was now a mother.  Jake had been dead for almost 3 years.  I was happily exhausted.  We visited Jake at the cemetery and spent the day with the twins.

Mother’s Day 2009 – I was pregnant with Sawyer.  The twins would be 2 at the end of July.  Jake would have been 4 that August.  We visited Jake at the cemetery and spent the day with the twins.

Mother’s Day 2010 – Sawyer had been dead 4 1/2 months.  The twins were almost 3.  Jake would have been 5.  We visited Jake and Sawyer at the cemetery.  I cried most of the day and tried to play with the twins.

Today we went to the cemetery.  One of the twins left a toy for her brothers.  She said she was leaving the toy to make Jake and Sawyer happy.  As I sit here and write I think she makes me happy.  So do all three of her brothers.

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

The Unveiling

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

Sawyer’s Story (part 14): Seeing Sawyer

March 29, 2011 at 11:20 pm | Posted in Death, funeral, Grief, mourning | 3 Comments
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All I wanted to do was see Sawyer again and hold him.  Somehow I thought none of this would be true if I saw him.  He would not really be dead if I held him and talked to him. 

Me & Sawyer

Evan and I made calls to the funeral home and the cemetery.  Both the people who helped us with Jake’s funeral arrangements were still there.  We made appointments to plan another funeral.  I just wanted to know when we could see Sawyer.  His body had been taken to the medical examiner’s office.  After the autopsy he would be brought to the funeral home. 

We went to the funeral home.   Evan and I sat in the same room we had been in 4 years earlier. We had the meeting about the casket, the service and all the other arrangements.  It was not a long meeting.  Just like with Jake there was no choice of casket.  There is only one size casket for babies. 

The meeting was over and Sawyer had not arrived.  We were told that we would not be able to see him till the next day. 

We thought of you with love today,
but that is nothing new.
We thought about you yesterday,
and the day before that, too.
We think of you in silence,
We often say your name,
But all we have is memories
and your picture in a frame.
Your memory is our keepsake,
with which we’ll never part.
God has you in his keeping,
We have you in our hearts.

We shed tears for what might have been,
a million times we’ve cried.
If love alone could have saved you,
you never would have died.
In life we loved you dearly,
in death we  love you still,
In our hearts you hold a place
no one could ever fill.
It broke our hearts to lose you,
but you didn’t go alone,
For part of us went with you. 
                – Author Unknown

More Magic Moments

February 24, 2011 at 4:58 pm | Posted in Grief, mother, silver lining | 15 Comments
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As I wrote in this post,  I try to appreciate good moments.  For the past 2 weeks Evan, the twins and I have been at Evan’s mother’s house.  My amazing mother-in-law was diagnosed with breast cancer 18 years ago.   She was on a form of oral chemo through the spring of 2003.  At that time the cancer came back in her bones.  Since 2005 she has had chemo 3 weeks on and 1 week off.  She had beaten all the odds until this year.

We are here spending time with her.  It is not easy but worth it.  Every day there are some good moments.   A rabbi has been coming to the house.  She explained a Hebrew term called “yikar.”  There is no exact translation but it means “treasure” or “gem.”   I try to etch these moments into my memory so that I will always have them.

I cannot help but think of precious moments we had with Jake and Sawyer.  All of Jake’s time with us was in the NICU but there were some good moments.  The days when Jake was doing well and reducing his reliance on the ventilators.  The day that I was able to change Jake’s diaper for the first (and only) time.  I always smile when I think of the one and only time Evan changed Jake.  Jake peed on his dad.

We were lucky enough to have more magic moments with Sawyer.  Among my favorites are bringing him home from the hospital and introducing him to the twins.  Evan’s mom was not able to meet Sawyer.  The weekend that they were supposed to visit was the weekend that the twins got sick.  Her immune system was compromised and we could not take a chance that the twins would get her sick.  The trip was postponed.  Sawyer died before they were able to visit.

One day last week it was unseasonably warm.  Evan’s mom was able to sit on the back deck.  She was able to visit with some friends.  The twins played in the snow and mud.  I will try to focus on the yikar – the treasured moments that we are able to capture.

Sawyer’s Story (part 9): The ER

February 2, 2011 at 4:40 pm | Posted in Death, emergency room, Grief, hospital | 9 Comments
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In the hallway of the emergency room I did not know what to do.  I stared at the door willing myself to be on the other side of it with Sawyer.  I thought Evan was driving right behind the ambulance so I did not understand where he was.  I later found out he jumped in the car and followed the ambulance.  However, when Evan got to a main street he realized he did not have his glasses on.  He did not have his contacts in his eyes either.  He drove back home to get his glasses. 

Meanwhile, I continued to cry in the hall.  The ER nurses and doctors were going about their business.  They were doing their jobs.   I kept thinking, “How can they possibly be going on with their lives when something is very wrong with Sawyer?” 

My cell phone rang.  It was my brother.  He told me that he was taking our parents to the airport.   I told him I hoped to call him back soon to let him know that Sawyer was fine.

Time seemed to stand still.  Why had I not heard back from the doctor?  Where was Evan?  The hospital chaplain came to talk to me.  I knew what this meant.  The hospital chaplain came to talk to Evan and me 5 years earlier.  They came to talk to us about Jake.  I could not talk to the hospital chaplain that night in the ER.  I walked away.  I might have said something but I do not remember. 

I called one of my oldest and closest friends.  I knew it was 4 something in the morning but I called anyway.   I remembered she told me she had gotten up the day after Thanksgiving to go shopping at an extremely early hour.  She answered and offered to come to the hospital.  I thanked her but said no.  I hoped to call her back soon to tell her everyone was fine. 

Evan finally arrived.  I had nothing to tell him.  No one had given me any updates.  The hospital chaplain was back.  This time she took us to a room.  I am  not sure how long Evan and I were in that room.  Eventually, a doctor came to talk to us.  He told us they were doing everything they could but Sawyer was not responding.  He said he would be back with another update.

I paced and every once in a while I sat on the floor.  Evan asked me to sit next to him on the couch.  I tried but I could not sit still. 

The doctor returned.  He said the words I could not believe we were hearing again.  “Your son is dead.”

Little Angel

We were given an angel to cherish and love. 

So tiny, so perfect, a gift from above.

When we looked at his face it was calmness we found

And that peace seemed to spread to all he was around.

His love touched our hearts like fine threads of spun gold

And we thanked G-d for giving us this angel to hold.

But we did not know then that time was our foe

And too soon, with a whisper, our angel would go.

Our hearts almost breaking, a touch soft as lace

Seemed to wipe at the hurt as it coursed down our face. 

We still have our angel to cherish and love.

Those gold threads now shimmer from Heaven above.

And though we can’t see him or cuddle him tight,

We won’t say goodbye, Little Angel, goodnight.

                                                – Author unknown

Sawyer’s Story (part 7)- 2:46 am

January 20, 2011 at 2:46 am | Posted in Death, Grief | 11 Comments
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I woke up at 2:46 am.  The night nurse was in our room.  She was doing CPR.  On Sawyer.  She was saying over and over again, “The baby is not breathing.”  I could not comprehend what was happening.  One year and 1 month later I still do not understand.  I doubt I ever will.

I jumped out of bed.  I started to scream.  Evan called 911.  The night nurse continued to do CPR.  Sawyer’s coloring was all wrong – but he was not blue.  I wanted to hold him.  I did not because he was receiving CPR.  I just watched.  I thought I saw his eyes open.  I could feel a flicker of  hope mix with the horrible pit of fear in my stomach.

The police were the first to arrive.  I have no idea what the police officer said.  I just could not understand what was taking the ambulance so long.  Evan told me to get dressed.  I was soaking from the night sweats.  I changed my clothes. 

I thought back to a Friday night/Saturday morning 5 years earlier when I got dressed to go to the hospital to see Jake for the final time.   The morning/night in 2005, I walked down the hall to where my parents were sleeping.  I told them we were going to the hospital to see Jake.  At 2:56 am December 26, 2009 I called my parents to once again tell them we were going to the hospital.  This time we were going to the hospital with Sawyer.

The firemen arrived next.  Evan ran downstairs to put our dogs in Uncle W.’s room. 

Sidenote:  We have 2 dogs.  I cannot believe I have not written about them yet but I will.  In another post. 

Evan waited outside our house to make sure the ambulance did not miss it.  Finally, the paramedics arrived.  They came up to our room with a huge stretcher.  The night nurse stopped doing CPR. The paramedics took over.  Now I not only could not hold Sawyer but I was having trouble seeing him through all the people gathered around him.

They took Sawyer to the ambulance.   There were so many people.  It was so chaotic.  I remember getting my jacket from the closet next to Uncle W.’s room.  I tried to tell him that there was something wrong with Sawyer.  I am not sure what I said.

Now I was in the front seat of the ambulance.  Evan was beside me.  The paramedics would not let us in the back with Sawyer.  We were both in the front seat.  The ambulance driver told us only one could sit up front.  The other would have to drive separately.  Evan promised he would be right behind us. We left Uncle W., the night nurse and the police in the house with our twins who miraculously were still asleep.  We drove away.

Preschool Pick up

January 12, 2011 at 11:48 am | Posted in Death, Grief, mourning | 5 Comments
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I stood outside the twins’ preschool and waited for them to come out.  Another mother looked at me and noticed my necklace.  I wear a necklace with charms for each letter of my children’s names.  She asked “Do you have that many children?”  Not really prepared for the question, I said nothing for a while.  I then surprised myself and said “Yes, I have four children.”

As I wrote in this post, answering questions about the number of children I have is not so simple for me.  But, I heard myself continue to talk.  “Our first son was 14 weeks premature.  He lived for 2 weeks.  We never got to take him home.  Then we had the twins.  Last year we had a full term baby boy.  He went to sleep the night of December 25th, 2009 and he did not wake up.  We are still hoping to find out what happened.”  

I did not stop talking when I heard the other mother try to tell me that I did not need to go on.  I did not cry.   The twins ran out of their school and into my arms.  I packed them and myself  into the car.  I drove us home and thought of my other 2 children buried just a few miles away.

Not long after that day I was on my street about to go jogging.  Neighbors were walking by and pushing their twins in a stroller.   I had not met them before and said hello.  A very ordinary exchange between neighbors took place and then there was that question again.  “How many children do you have?”

I took a deep breath and repeated the explanation I gave the mother at preschool pick up.  Perhaps this is my new answer. 

I finished telling the neighbors about my children.  I told them about Jake, the twins and Sawyer.

There are things that we don’t want to happen but have to accept, things we
don’t want to know but have to learn, and people we can’t live without but have
to let go. ~Author Unknown

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