“How many brothers and sisters do you have?”

November 20, 2014 at 2:22 pm | Posted in Grief, twins | 11 Comments
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I have previously written about being asked “How many children do you have?”  Over the years, I have different responses to this question.  It may always be a tricky question for me to answer or maybe one day I will come up with the perfect response.  I will let you know.

“How many brothers and sisters do you have?” is the bereaved sibling’s version of this question.  They are both such common and polite questions but the answers for some of us are so complicated.

The other day on the playground a classmate asked one of the twins, “Do you have any brothers and sisters?”

She answered, “Yes, I have a twin brother and my 2 other brothers, Jake and Sawyer, passed away. ”

The second grade little boy answered, “Jake and Sawyer probably passed away to get away from you.”

Our little girl walked away.  She is not perfect, she has and will say mean things at times too.  I wish I could protect all of my children all the time.  Jake and Sawyer have taught me that I cannot.  As much as I hate it, there are things beyond my control.  I am going to do my best to teach kindness to the 2 who are physically with us.

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Bereavement Training

October 24, 2013 at 10:14 pm | Posted in Grief, Jake, NICU, Sawyer | 6 Comments
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quote - Dalai-Lama-quotes-be-kind

Today I, along with several other parents, spoke to a group of nurses as part of their bereavement training.  This is the second parent panel I have been a part of in the last few months and I have participated in several others over the years.  At times, I find talking about Jake and Sawyer cathartic.  I am always hopeful that sharing our story can somehow help others.  After each of these panels I have come away with lists of suggestions for nurses and tips for NICU parents.

There is a common theme in all the stories.  All bereaved parents want their child/children to be remembered.  There will not be the lifetime of memories that hopefully other children will have.  The stay in the hospital and every aspect of it is very often all the parents have.  The doctors and nurses are big parts of these memories.  The kindness and compassion of the medical professionals is so important.  I am thankful that bereavement training exists.

No matter how small the baby is or how long the baby lived, parents want their baby treated like every other baby.  They want to be treated like every other parent.  One mom said she just felt like she was in the middle of a really bad Lifetime movie.  We are all hoping that we can change the channel or wake up from the nightmare of outliving our child/children.  Unfortunately, this is our reality.  Thank you to all those who help us along our way.

Kindness Campaign

July 20, 2013 at 10:18 pm | Posted in Jake, life lessons, Love, Sawyer | 1 Comment
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At the age of three, Mattie Stepanek 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.  A few of his books are Heartsongs and Hope Through Heartsongs.  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, continues to spread Mattie’s message of peace and hope.  Her strength and courage is remarkable.  In honor of Mattie’s birthday (July 17th) and death day (June 22nd), Jeni has held Peace and Kindness Campaigns.  Above is a slideshow of flyers used for the Kindness Campaign this summer.

Speaking of kindness, a gigantic thank you to Sara, my cousin.  She wrote to Method after reading my last post.  Method’s customer service could not find any useable soap but they wrote back a really nice response.  Thank you again Sara!

Remembering Miracles

November 16, 2012 at 10:02 am | Posted in Grief, life lessons, normal?, silver lining | 3 Comments
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Thank you Samantha Murphy for remembering Jake and Sawyer.  Samantha recently started writing, Remembering Miracles.  She writes to ” keep the memories alive of the children who are now walking as angels in Heaven.”  Her blog is “to honor them, and to share their stories, so that they will live on forever, and never be forgotten. But although they are no longer physically here, their spirits live on, and will never fade as they continue to fight for their cause. So come on. Join the fights. Join the remembrance. What have you got to lose?”

I am honored that she wrote about Sawyer.   Remember Sawyer.

And, she wrote about Jake.  Remember Jake.

Samantha you are so very kind, thoughtful and wise beyond your years.  Thank you again for not letting the memories fade.

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