what i have learned in the 10 years since Jake died

August 31, 2015 at 9:44 pm | Posted in Death, Grief, Jake, life after loss, Love, why I write | 11 Comments
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Dear Jake,
Another August has come and gone – the 10th August since you left this world.  I honestly was not sure that I would make it – 10 years seems like an eternity at times but I still find it so hard to believe that it has been that long since your dad and I last held you.

The first thing that I learned is that I will make it through the days, months and years without you.  I do not like it and it is excruciatingly hard.  But, your dad and I were not given a choice.  We are still alive.

I started writing this blog when you were gone for 5 years.  Five years also seemed impossible.  You would have started kindergarten and your brother Sawyer had died so unexpectedly 8 months earlier.   A therapist and a few friends suggested I try writing.  I thought why not – maybe I can help myself and possibly help others.

I think I had visions that one day I would change the name of the blog to something other than a mourning mom.  It turns out 5 years later I am still a mourning mom.  I have not found a cure for hydrops or premature birth.  In fact, we still do not even know what caused Sawyer’s death.  I have not started a non-profit or a race.  And, I still have days when I cannot stop crying because I miss you and your brother so much.

I wanted to write what I have learned in these 10 years living in this world without you.  I thought I could write one post to sum it all up but it is not quite that easy.  So, this my sweet Jake will just be part 1.   I will write to hopefully help others through their own journey.  And, even if I cannot help others I know that in another 5 years I will look back on these posts to help myself figure out how to survive the 10 year deathiversary of your baby brother.

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No worries (I wish. . .)

March 16, 2014 at 9:28 pm | Posted in Grief, Sawyer, twins, why I write | 10 Comments
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If your problem has a solution then…why worry about it? If your problem doesn’t have solution then…why worry about it?   – Chinese Proverb

In theory I think this makes sense and I agree with the proverb, but I have a problem:  I think that worrying is in my DNA.

Everyone at our house is feeling fine now but last week that was not the case.   Evan and one of the twins were sick.  It is part of life – everyone gets sick.  But, I do not like it one bit!  I try very hard to rely on the rational part of my brain but the irrational part of me always seems to take over.  I am transported back to the days and nights before Sawyer died.  Was there something going on?  Was he sick in some way?  What did I miss?  How could he be seemingly perfect one moment and then dead the next?

I know that the twins are not Sawyer.  They are bigger.  They are stronger.  They can tell me when something is wrong (and usually can specifically detail what is wrong too!).  However, I cannot help but second guess myself.  I cannot help but worry about what we could have done differently, what might have prevented Sawyer from dying that night, how we might have taken a different action or course and he would still be here with us today.  I also know that even if we did miraculously figure out the cause of Sawyer’s death it would not change the fact that he is dead.  Resurrection is not our reality.  Of course, I cannot change that now, and of all things, I logically know I should not worry about things I cannot change.  And yet, those are the things that seem to draw out my worries the most.

Spreading Awareness

October 6, 2013 at 9:14 pm | Posted in life after loss, Love, silver lining, why I write | 9 Comments
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This past weekend, I walked in one day of the Atlanta 2-Day Walk for Breast Cancer and in the Atlanta Walk to Remember.

In addition to walking, Evan has been talking as well.  Last week he went to Capitol Hill with a group from the March of Dimes.  They spoke to members of Congress about the importance of newborn screening and funding prematurity studies.

This week, Evan spoke at the Atlanta Walk to Remember.  Below is his speech:

“Dad and Father”

I am the father of four children,
but I am “Dad” to only two kids.

Our six-year-old twins call me “Dad” or “Daddy”
– or sometimes other silly things, or things I won’t mention here.

Our first child, Jake, never left the hospital
and lived only 2 weeks.
He was born 14 weeks early
and with other ultimately unsolvable medical complications.

Our fourth child, Sawyer, was born happy and healthy
and came home with us.
But six weeks later, with no warning,
and for no reason that has yet been fully figured out,
his heart stopped working.

Neither Jake nor Sawyer ever got to call me anything.

My family and I grieve the deaths and loss of our boys,
as you all grieve the loss of your children and little loved-ones.

As their father, I grieve the loss of Jake and Sawyer’s childhoods,
the big moments that they were supposed to have but never will.
I grieve the loss of their chance to grow up, to flourish,
to become teenagers, young men, husbands and “Dads” themselves.
I grieve the lost ball games and trips and adventures we’ll never have.
I grieve all the missed hugs and high-fives.
I grieve even the cranky wake-ups and bedtime fits we know so well from our twins,
but never got to experience with Jake or Sawyer.

I grieve all the truly heart-warming bedtime snuggles
that will never happen with Jake or Sawyer.
Beyond all those missed tender moments,
I also grieve the loss of my belief that horrible things won’t happen to me or my loved ones.
I am all too aware now that they can happen to anyone – as they have happened to all of us.

It’s all I can do most of the time
to just hope nothing like losing Jake and Sawyer ever happens again.
As a father, I also grieve the loss of my once unshakable belief
that I could always protect my wife Lanie and all our children
from such terrible pain and anguish; that I can “fix” their problems;
that I can always make everything all better.

I know that I cannot make Jake or Sawyer all better or bring them back.
I’m not sure that grief is something a father can ever overcome.
Of course, I have learned that you do not overcome or get past grief.
You just go through it.
I hate that my family has to go through it too,
but thank heavens I have an incredible wife and wonderful kids
to travel along with me as I go down that path.

So I guess I will always grieve the loss of never being called “Dad” –
not even once – by Jake or Sawyer.

But that doesn’t mean I am not their father.
I am and always will be a proud father of all my kids,
no matter what they call me
or what they were never able to call me.

And, I am so very proud of Jake, Sawyer and the twins’ dad and father.

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Silent and Stuck

February 18, 2013 at 10:30 pm | Posted in Anniversaries, Grief, Jake, life lessons, Sawyer, why I write | 13 Comments
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martin-luther-king-jr1

Sawyer was born right before Thanksgiving and died Christmas night.  So, since he died the holidays have been especially hard.  If I am honest with myself the holidays have been excruciatingly difficult since Jake died.  Pretty much November, December and most of August (the anniversaries of Jake’s birth and death) are not my favorite times of year.

Life is a roller coaster.  I definitely got that message.  On a roller coaster there are usually some ups after the downs.  However, this year after the anniversary of Sawyer’s death there was no up.  My grandfather died.  My cousin’s partner lost her battle to breast cancer.  Funeral. Shiva. Unveiling. Family drama.

Evan is fine now but had a few health issues that once again shook me to my core.  I have been stuck.  There might not be an up in sight but I have to keep moving forward.

My Ghost of Christmas Past

December 26, 2012 at 12:02 am | Posted in Grief, Love, mourning, normal?, why I write | 21 Comments
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Sweet Sawyer

Dear Sawyer,
This picture of you looks as if I could just pick you up.  My arms ache every time I look at it.  I cannot believe I will never hold you again.  I should have never let you go that night.  If I knew it was the last time I was ever going to hold you or kiss you I would never have put you down on December 25th three years ago.  If I were holding you would I have been able to save you?  Why did you have to go?  Will we ever know?   So many questions without any answers.

The rational part of me knows that even if I ever do find out why you died it will not make a difference.  You will still be dead.  And, I will still be alive.  The irrational part of me thinks that if I could just understand your cause of death I could protect you.  Change the fact that you are gone.  The logical me then takes over again and argues that if we knew the cause then we could test the twins.  We could prevent other children from dying.  The rational, irrational and logical me might be battling it out forever.  None of us will win.  We will have all lost.

Quote - winnie the pooh

I hope that I can always remember how it felt to hold you.  I want to permanently erase the images of you in the emergency room.  Unfortunately, they are burned into my mind.  Luckily, there are other pictures of perfect little you. . .

Sawyer

Missing you always and forever.  I will look for you in my dreams and hope that I can hold you again one day.  I love you to the moon and back.

Very Inspiring Blogger Award

August 22, 2012 at 8:28 pm | Posted in life after loss, why I write | 10 Comments
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Thank you very much to Di from It’s Dilovely for the nomination for this award:

The rules to the Very Inspiring Blogger Award are as follows:

  1. Display the Nomination logo on your blog
  2. Link back to the person who nominated you
  3. State 7 things about yourself
  4. Nominate 15 others and link to them
  5. Notify those bloggers of the nominations & award requirement

See above for #1 & #2.  So here goes #3:

  1. I have 1 million freckles.  I was not always so happy to have them.  When I was young, my mom always told me that they were kisses from the sun.  Now I am ok with the freckles and I am explaining to the twins about their sun kisses (which I still do not know how the sun gets through all the sun block to kiss them!).
  2. I am left-handed.
  3. I got an N (non-satisfactory) in handwriting in 2nd grade.  We wrote in pencil in 2nd grade and I did not figure out how to pick up my arm and not smear the page till the 3rd grade.
  4. In 3rd grade I thought I knew everything.  I clearly remember walking home from school one day thinking to myself, “I know how to divide and multiply.  I can write the alphabet in cursive.  What else could I possibly learn in school?”  Turns out there was a lot left to learn and I did not even need to bother learning cursive…
  5. I worked at an ice cream store in high school.  My friend Susan worked there too.  Susan and I are both tall with brown hair and brown eyes.  I have freckles (see #1) and she doesn’t but people would often confuse us for each other.  The owners of the ice cream store called us both Susan the entire time I worked there.
  6. Evan proposed at an ice cream store and had an ice cream flavor created for me.
  7. My grandfather is turning 100 next week!

Okay – finished with #3.  Here goes #4, nominations:

  1. Mama Bird Diaries – Kelcey is super funny, clever and witty.  She always makes me laugh and reminds me to look for the funny in life.  I am pretty sure that Kelcey’s blog is the first one I ever read.
  2. Four Plus An Angel – Jessica is the mother of 5.  She has a teenage daughter with autism, 2 surviving triplets and a rainbow baby in her arms.  Hadley is always in her heart.  She writes beautifully and has the uncanny ability to write exactly how I am feeling.
  3. Cora’s Story – Kristine writes in memory of her daughter Cora.  Along with writing about her blog, Kristine also wrote the free e-book When a Friend’s Baby Dies.
  4. A Greener Biener – Daphne writes about her and her families’ adventures in treating the planet more gently and eating better.  She has not only given me recipes for kale chips but inspired me to compost.
  5. The Spohrs Are Multiplying – Heather and Mike both blog on this site.  Their first daughter Maddie died suddenly in April of 2009.  The blog includes adventures of their daughter, Annie as well as photography tips, hair do ideas, recipes and life without Maddie.
  6. The Good Cook – Linda shares fantastic recipes and her journey since TBHITW (the best husband in the world) died.
  7. Rock Star Ronan – Ronan died in 2010 from neuroblastoma cancer.  His mother, Maya made a promise that she would continue to fight for Ronan until cancer survival rates start to improve and eventually a cure is found.
  8. Faces of Loss – Kristen Cook created this group blog when her daughter Stevie Joy was born still.  Kristen felt alone in her grief until she started to search the internet.  She created a place for women to share their stories and faces.  Faces of Loss, Faces of Hope brings awareness to the issue of pregnancy/infant loss.
  9. Simon’s Beat – The Sudman’s created Simon’s Fund and the blog in memory of their baby boy, Simon.  The mission of Simon’s Fund is “To save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death.”
  10. Jana’s Thinking PlaceMommy wants Vodka and Band Back Together –  Becky (from Mommy Wants Vodka) and Jana are the creators/editors of the group site Band Back Together.  It is a place where people connect about the good, the bad and the ugly parts of life.
  11. Missing Maxie – Abby writes about her son Max, who died at the age 9 1/2 months and her newborn Mo.
  12. Glow in the Woods – This is a group blog for “For parents of lost babies and potential of all kinds.” The creator an editor, Angie also writes the blog Still Life With Circles and created the project right where I am.
  13. Dr. Joanne – Joanne Cacciatore started the MISS Foundation as a way for families to cope with the tragedy of a child’s death.
  14. The Crazy Life of a Writing Mom – EC Stilson wears many hats.  She is an author, a musician and a mom and writes about all of her adventures.
  15. It’s Dilovely – Di blogs from the perspective as a mother (one child with her, one who died and one on the way).  She also writes from the perspective of a person (BANG, by a normal girl).

One of my hopes for my writing is that someone will read this blog and find something that will make their life some how easier.  Thank you again, Di, for the honor.

Thank you Jake

August 12, 2012 at 9:52 pm | Posted in after death?, Grief, twins, why I write | 12 Comments
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“If there ever comes a day when we can’t be together
keep me in your heart, I’ll stay there forever.”

Winnie the Pooh,  A. A. Milne

Dear Jake,
It was 7 years ago today when I was admitted to the hospital.  The doctors said there was no other option.  You were not ready for this world.  I suppose the world was not ready for you.  Your dad and I were terrified when the doctor told us my contractions were 3 minutes apart.  I could not believe at 26 weeks it could possibly be real.  I did truly believe you would live.  You held on for 2 more days before we actually got to meet you.

I still cannot understand how it is 7 years later.  I do not need a calendar to tell me the time of year.   My tears are much closer to the surface.  The lump in my throat is back.  My irritation and impatience have also risen just below my skin.  My nerves are so raw.  I wish to lock myself away so that I do not snap.  I already have apologized to your daddy.   If only just for a few moments I could be with you and your littlest brother.  I know that it is not possible.  However, this time of year I frequently seem to find myself back on the island of denial.

Your Yahrzeit was this weekend.   (The Yahrzeit falls annually on the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.)  Your dad and I lit a Yahrzeit candle for you.

You have 2 new cousins!  Welcome to the world Eli and Owen!!  I wish you could meet them.  You probably already know this but your sister asked if she could have one of the babies.  She desperately wants a baby brother.  She talks about you and Sawyer almost every day.  This morning she brought me two blankets she found for each of you.  She is so sweet and thoughtful.  I am trying my best to keep it together.

Thank you for chosing us as your parents.  Thank you for the time you were able to spend with us.  Thank you for sending us your baby brother and sister.  They are shielding us from all the rain.

I miss you so much.  I love you to the moon and back baby boy.  I will look for you in my dreams.

August Again

August 4, 2012 at 10:54 pm | Posted in Anniversaries, Death, Grief, why I write | 10 Comments
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No matter how far the distance you have traveled nor the failures that have gathered, hope would still meet you anywhere.  – Dodinsky

August comes every year.  Right after July.  I have lived through these anniversaries of deaths and births before.  There are happy days this month too. 

Unlike the first year after Jake died not all the days are dark.   I will try my best to take care of the twins, keep busy and smile.  I will not always succeed. 

I have learned that part of my journey since Jake and Sawyer died is that grief at times sneaks up and knocks the wind right out of me.  Grief does not take me by surprise in August.  I know that it is there and I will brace myself for it.

Birthday Wishes

July 30, 2012 at 9:50 pm | Posted in Grief, life lessons, Love, silver lining, twins, why I write | 9 Comments
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Happy Birthday!

As I wrote last year on your 4th birthday I am so very thankful for you two.   I am sorry that I did not take you to see your brothers on your birthday.  I just could not this weekend.  I promise that I will very soon.  Then I will take you out for ice cream (thank you Daphne for the brilliant suggestion).

I wish that you had a chance to know your brothers.  I wish that I did not have to explain death to you at such an early age.  I wish that some of your first sentences did not include “don’t cry mama.”

I wish I could find a picture of you from your 3rd birthday.  I will confess to you now that we almost did not have a party for you that year.  After Sawyer died the thought of planning a party was so daunting.  We realized that you no matter how sad we were you 2 deserve happiness (and a birthday party).  We did plan it and if I remember correctly we sent out the invitation the week before.  You both had a great time.  I just wish that 2010 was not such a blur of grief.

I wish that I could have protected you from my dark days.  I wish that you will always know how much sunshine you both bring to me.

I wish that you will continue to look for rainbows where ever you both go and that I can go with you.  And hug you both tightly.  Love you both to the moon and back.

Fourth of July & Faces of Loss

July 4, 2012 at 9:44 am | Posted in Grief, life after loss, Love, silver lining, why I write | 2 Comments
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4th of July

Happy 4th of July!

Faces of Loss

Stevie Joy, was stillborn on May 8th, 2010, when Kristen Cook was 26 weeks pregnant. Her perfect pregnancy came crashing down in an instant the moment she heard those shocking little words: “there is no heartbeat.”  Among the devastation the feeling of complete isolation and loneliness comes along with the death of your child.  Kristen began to search the internet and quickly realized that she is not alone.  Pregnancy and child loss does not discriminate it affects families of all walks of life.  There are members of the club all over the world.  As Kristen writes, “It’s not just something that happens to “other people,” it can happen to anyone. I realized there were so many other nice, normal people like me who had gone through the death of a child. And they were surviving. That realization gave me hope.”

Kristen took her hope and created a place for women to share their stories and faces.  Faces of Loss, Faces of Hope brings awareness to the issue of pregnancy/infant loss. Kristen’s hope is that by “telling the world we are not afraid to show our faces and tell our stories, barriers will be broken down. Taboos will be broken, and lines of communication will be opened.”

I have shared our story.  I wish none of us had to live in a world without our child/children.  Thank you Kristen for helping us to know that we are not alone and that we can survive.

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