I Heart the March of Dimes

April 18, 2012 at 6:18 pm | Posted in Grief, life lessons, Love, parents | 2 Comments
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As I mentioned in my last post, our family supports the March of Dimes.  We have walked every year since Jake died.  Our team was named Jake’s Journey.  After Sawyer died we renamed it to Jake’s Journey & Sawyer’s Strides.  This year we are excited because the March of Dimes contacted us to let us know our donations are being matched by the hospital where all 4 of our children were born. 

The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.  I believe that the March of Dimes is making a difference and saving babies.  

I cannot do anything to bring back Jake or Sawyer but maybe just maybe I can help spare other parents the heartbreak of having to live in world without their child/children. 

Thank you to all those who supported our team this year and in past years.  Thank you also to the hospital for matching funds.  We appreciate all of your kindness and generosity.   If you would like to support Jake’s Journey & Sawyer’s Strides please click this link.

What I Need

April 14, 2012 at 11:12 pm | Posted in Death, life after loss, mourning, normal? | 19 Comments
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I am not always able to adequately articulate my feelings.  Jake and Sawyer’s deaths have often left me feeling alone and misunderstood.  Sometimes I read something and it is exactly how I think and feel.  Reading Four Plus An Angel  by Jessica, often leaves me with that reaction.  Jessica, writes beautifully about her life without her daughter Hadley.

What I Need by Jessica

I need to say her name without bringing everyone to tears.

I need her life to be included in the count of children, grandchildren, nieces and nephews.

I need kindness on birthdays and understanding on holidays.

I need to stay in bed and a reason to get out of it.

I need to talk endlessly and to let the phone ring.

I need an extra hug and respect for my space.

I need someone to ask how I’m doing and want to know the real answer.

I need careful announcements of pregnancies, baby showers and births, mine did not turn out as I hoped.

I need a “handle with care” sticker for my heart, my emotions have been fragile since the day I said goodbye.

I need patience and reminders for my mind, part of it will always be somewhere else.

I need forgiveness for not being the friend, sister, daughter and wife I used to be.

But more than anything I need you…

your support, your friendship, your understanding…

a lifetime is an impossibly long time to wait to hold my child again.

Two other impressive things going on at Four Plus An Angel:

  1. Jessica is also an advocate for autism.  She has a very cool project going on during April, Autism Awareness month.  Jessica is asking for a picture of you or someone you know or love who has autism, holding up a message they would like the world to know about autism. For more details on the project and where to send pictures click here.
  2. Jessica, like our family, supports the March of Dimes.   She is very close to her goal and I am hoping that she makes it.  Click on the button below to donate to Jessica’s team.

Sawyer’s Aunt

April 10, 2012 at 10:26 pm | Posted in Death, Grief | 6 Comments
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On my last post, The Good Cook commented that “It truly does take a village to mourn one lost love.”. We are not alone in our grief. Other family members mourn. Friends mourn. Sawyer and Jake are loved and remembered by many.

Not long after he died, one of Sawyer’s amazing aunts wrote the post below:

This is incredibly sad for me to write.  I hope writing about it helps.

My brother’s baby stopped breathing and died in his sleep, almost two weeks ago.

We were all in terrible shock. Sawyer was a sweet, beautiful little thing, only a month-and-a-half old. We’d just Skyped with my brother and sister-in-law and watched him sleeping contently in his mother’s arms. I’d had the chance to hold him myself over Thanksgiving. Impossible.

And not fair. Especially not for my brother and his wife, who’d already lost their first baby due to medical complications. They then went on to have twins–a boy and a girl–now two-and-a-half–both adorable. But now this.  I can’t imagine having to go through the death of a child once, let alone twice.

I flew as quickly as I could to their place, hoping to support them in any way possible. When I arrived, family was already there helping. Others would arrive soon. There was also a great circle of friends who stopped by to lend a hand and offer condolences.

A neighbor from down the street, came to drop off food and check in on my sister-in-law and brother. She told me she had lost her own daughter to SIDS. She showed me a pendant she wears around her neck always reminding her of her daughter. I was told shocking stories about others who too, had lost children.

I asked her how she was able to handle the grief. She explained she already had other children at the time, and she had to go on living for them. I thought of my brother’s twins and was hopeful that my brother and sister-in-law would be able to do the same.

My niece had been asking where her baby brother had gone. My nephew would run up to his mother, stroke her arm, hug her and say, “I’m so proud of you, Mommy.” She would thank him and try to hold back the tears. Both the twins knew things were out of sorts, and that their little brother wouldn’t be living with them anymore, but at this age, they didn’t fully understand what had happened. A small blessing for now.

We all asked WHY? Why him? Why them? Why now? I thought of what amazing parents they both are. In addition to making sure their twins are well-fed, happy and educated (as educated as 2-year-olds can be) they keep their kids so well protected that I’ve had to ask them to help me get into the bathroom, or turn on the stove because of all the child-proofing they’ve done. It’s clear there’s no lack of love or protection for the children in their house. But no matter how many times we asked why, there were no clear answers, and there likely wouldn’t be for quite a while.

When we finally attended the funeral, on a chilly Atlanta morning, the rabbi conducting the service brought up a question I’m fairly certain none of us had asked.

“As adults we ask, ‘Why?’…What we need to ask is, ‘When?’ “

Ask when? When what?

“Ask WHEN Sawyer is…WHEN is Sawyer,” he said.

I didn’t understand what he meant, but he went on to explain.

Sawyer is when…we’re spending time with family. He’s when…we’re out for a walk on the beach. He’s when…we’re at a ballgame. A bit of him is with us when…we are. Simple.

I understood what he meant.  It brought a small measure of peace.

The sentiment will stay with me always. So will a bit of Sawyer. And I’ll never forget…when.

The Ocean

April 4, 2012 at 9:28 pm | Posted in Death, Grief | 5 Comments
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I met a bereaved father the other day. There is an immediate level of familiarity when you meet another member of the club. Bereaved parents all have different stories but we have all walked in the darkest valley of death. We have all cruelly defied the circle of life and outlived our children.

It has been 7 years since his 29-year-old son died. The father went on to tell me an analogy of grieving for your child. I am not sure I can explain it as eloquently as he did but I will try.

Grief is like an ocean. At times it is calm but there are always ripples. Other times the water is rough. The ocean is unpredictable. Out of no where and with little or no warning a tsunami will drown you. Over time the waters will calm down again but they will never be still.

On a completely different but still ocean related note, click this link to hear the twins tell their versions of their great grandfather’s ocean joke.

Running with the Rosebuds

March 20, 2012 at 10:48 pm | Posted in after death?, life after loss, Love, normal?, twins | 7 Comments
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Last weekend the twins ran in a race to support Cystic Fibrosis.  One of my brother’s best friends, Charlie, had CF.  Cystic fibrosis is an inherited, chronic disease that affects the lungs and digestive system of about 30,000 individuals in the United States, and 70,000 people worldwide. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical care have enhanced and extended the lives of children and adults with CF. Many people with the disease can expect now to live into their 30s, 40s and beyond.

Charlie’s parents were told that he would not live to be a teenager.  He beat the odds and he did live past his teens, twenties and into his thirties.  Charlie was an amazing person who inspired all who were lucky enough to know him.  I hope that Jake and Sawyer have somehow been able to meet Charlie.

Both Evan and his sister have been diagnosed with lung diseases which CF research could potentially one day help.

Click here to see the twins race warm up.

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TMI vs. not TMI?

February 28, 2012 at 10:46 pm | Posted in life lessons, normal?, twins, venting | 5 Comments
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I do talk about Jake and Sawyer – and if you are reading this then you know I do write about them quite often.  They are never far from my thoughts.  However, I will at times not mention my 2 children who are not with me.  Sometimes it is because I do not know the other person and will never see them again.  Other times it is because I do not want to see the look of pity which often accompanies Jake and Sawyer’s stories.

Then there are times when I give too much information on purpose.  I distinctly remember a wedding shortly after Jake died.  Evan and I were talking to 2 other couples.  One of the couples, who are our very good friends, like us did not have any children at home at the time.  The 3rd couple kept mentioning their kids and the fact that we did not have any.  They asked things like, “How long have you been married?”  We each answered.  Couple #3 followed up with, “So, aren’t you thinking about having kids?”  We each politely tried to dodge the questions and change the subject.  Couple #3 did not take the hints.  I finally had enough.  I wanted to stop this line of questioning.  So, I piped up,”We buried our son a few months ago.”  I thought that the conversation would come to a screeching halt.  I was wrong.  Couple #3 does not miss a beat, “When will you start trying again?”

The past few days I have been once again tempted to share too much information in order to stop a conversation.  We have been receiving many emails about teacher appreciation week at the twins’ preschool.   Each class needs volunteers for a specific time so the teachers can eat a child free (aka peaceful) lunch.  The exact time the volunteers are needed is when Evan and I have a meeting scheduled with a rabbi to discuss Sawyer’s unveiling.

At first I did not reply to the emails.  The emails kept coming.  I drafted the following:

“I am sorry I cannot volunteer for the teacher appreciation lunch because we need to meet with a rabbi so that we can plan our youngest son’s unveiling.  We have had trouble getting the correct headstone.  Now it is here and the rabbi who presided over Sawyer’s funeral took a visiting rabbi assignment up north.  He won’t be back till April.  A very good friend put us in touch with her rabbi.   We are meeting with him at the exact same time you need volunteers.”

I deleted my rambling email and opted for not TMI:

“Sorry again but I just cannot volunteer at that time this week.  If something changes I will let you know asap.  Hope that you have a good night.  Thank you.”

Sometimes less is more.

Where are Sawyer & Jake? (part 2)

February 26, 2012 at 9:16 pm | Posted in after death?, Death, Grief, life lessons, Love, normal? | 5 Comments
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In this post I wrote that I believe Jake and Sawyer are in our hearts.  I also believe they are close by.  I do not have any proof.  It is just a feeling (and a hope).  Maybe at times it is more than a feeling.

Last year, in the last few days of Evan’s mother’s life she (Shelley) spoke about people in the room.  She was at home.  Family, friends and hospice were with her.  A few times Shelley mentioned that there was a woman behind her and a little boy on the bench at the end of her bed.

When she was 17, Shelley took care of her sick mother.   Shelley cared for her until she died 2 years later.  Shelley was 19 at the time.  Over 40 years later, Shelley spoke about a woman behind her bed.  I believe that woman was her mother.

Evan’s sister asked questions about the woman and the boy.  Shelley said that the boy seemed like he was around 6.  At the time of Shelley’s death Jake would have been 5 1/2.  I like to think that the boy was Jake.

“It is the secret of the world that all things subsist and do not die, but only retire a little from sight and afterwards return again.  Nothing is dead; men feign themselves dead, and endure mock funerals and mournful obituaries, and there they stand looking out of the window, sound and well, in some new strange disguise.”   – –  Ralph Waldo Emerson

It is all part of my new normal.  The reality I live in now does not include Jake and Sawyer’s physical presence but they are always nearby.  They send me signs – like when I see a praying mantis on the window of my parent’s 8th floor condo or a ladybug in the middle of winter.  I will look for their signs while I wait to hold Jake and Sawyer again.  As an extremely wise bereaved mom wrote, “a lifetime is an impossibly long time to wait to hold my child again.”

The Things People Say . . .

February 2, 2012 at 9:46 pm | Posted in Grief, life lessons | 12 Comments
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After Jake died people did not know what to say.   There would be a lot of awkward conversations which would start like this:

“He is in a better place.” 

OR,

“He would have had a difficult life.”

Followed by me either not responding at all or starting to cry.

After the twins were born one of the conversations I can recall started with, “Oh how great, you got your boy back.”  

More silence and crying from me.

After Sawyer died there were more statements similar to these –  most of which are not worth repeating, writing down or remembering.  At first, the comments would make me even sadder (which I did not think was possible).  Then the comments made me mad.  Somewhere along the way I decided that people did not mean to hurt me.  They just have no idea what to say.  Sometimes they just say whatever comes to mind first.  Or, they try to relate to Jake and/or Sawyer’s deaths with an experience of their own – or something that happened to their neighbor’s 2nd cousin.

I try to believe that people always have the best intentions no matter what actually comes out of their mouths.

I will confess, at times I have wished for a taser to silence people before they say stupid things. 

Thank you to Tiffany and Mary for posting this video because it pretty much says it all.

Sunshine and Rain

January 30, 2012 at 11:14 pm | Posted in Grief, life after loss, normal?, silver lining | 7 Comments
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Weather is a great metaphor for life – sometimes it’s good, sometimes it’s bad,
and there’s nothing much you can do about it but carry an umbrella.
~Terri Guillemets

Thank you for all the well wishes.  Today was sunny and both of the twins went to preschool.   This time of year the birthdays, anniversaries and yahrzeits for Jake and Sawyer are over.  The “pressure to be happy because it the holidays” is over too.   The dark days are a little less dark.

It helps that the sun has been shining and this winter has not been too cold.  There has been a lot of rain and sometimes there are storms.  It is all part of life.  I wish some of the storms were not quite so severe but no one asked me.

When it does rain the twins usually belt out a few verses of “rain, rain go away.”  This brings a smile to my face.  If that does not do the trick then I can always fall back on the song Blame it on the rain by Milli Vanilli.  “You can blame it on the rain. . .You got to blame it on something” is then stuck in my head for the rest of the day.  So, even on the dark rainy days there is some light.

Paranoid Parenting

January 28, 2012 at 11:22 pm | Posted in emergency room, life after loss, normal?, twins | 9 Comments
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I felt my heart racing as I drove down the street towards the twins’ pediatrician.  They were in the back seat.  I hoped they did not sense my panic.  My heart always races just a bit faster when we pass the entrance to the emergency room of the Children’s hospital.  I cannot drive past it without thinking of driving in the ambulance with Sawyer.

Confession #1 – At times I have driven way out of my way to avoid this entrance.  However, passing it is the only good route to the twins’ doctor.

Confession #2 – I have thought about switching pediatricians just so I do not have to drive down this street all the time.  I rule this out because I know that these flashbacks are in my head and I cannot escape them (and I love our pediatrician).

It was the 2nd straight day of high fevers.  Pink eye had definitely returned to our house.  And, as usual I am completely paranoid about their breathing.  Colds, flu, pink eye – it is all part of being a parent.  I know this and I repeatedly remind myself that all kids get sick.  I try to trust my instincts as a mother.  The doubt always creeps in – not matter what I do.  I thought Sawyer was fine the night he died.  My maternal instincts failed me that night – could they fail me again?

I had begged the sick appointment nurse to squeeze us in Friday afternoon.  We were the last appointment.  We got the pink eye medicine and an antibiotic.  Pulsox levels were good.  No irregular heart beats.   My panic started to subside.  I packed the twins back into the car and drove home.

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