a special project

July 22, 2015 at 10:36 pm | Posted in Death, Grief, hospital, life after loss, Love, NICU | 12 Comments
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The “consult room” – every hospital has one or several.  The “consult room” is where Evan and I held Jake for the last time. It is where we were when the ER doctor told us that Sawyer was dead. They were different “consult rooms,” in different hospitals but they looked the same. Standard issue plastic couch and chair. Generic flowery art. Striped carpet.

No one wishes to be in these rooms.  The hospital where all 4 of our children were born has a Perinatal Bereavement Office where I volunteer at times.  The extraordinary people who work at the office decided that they were going to renovate the consult room in the Special Care Nursery of the NICU.   I was lucky enough to help with this special project.

One of Evan’s mother’s paintings is now on a wall of the newly decorated consult room.  On another wall there is painting by an artist who is the great-aunt of other parents who also used the room when their little girl, Lily, died.  Her parents helped with this special project too.

image

This is still a room that I hope none of you have to enter.  I know that realistically there are people who will be in that room holding their precious baby for perhaps the first and last time.  I wish that one day all babies will go home with their parents but until that day I am glad that there is now a warm comforting room where families can spend whatever time they have together.

Evan and I are truly honored by the dedication of this room and that this will be part of Jake and Sawyer’s legacy.

image

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Faith?

November 10, 2014 at 11:40 pm | Posted in Grief, life after loss | 7 Comments
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After Sawyer died a rabbi spoke to me and Evan.  Evan told him that he was very angry.  The rabbi told Evan to go ahead and be angry at G-d, ” because if anyone can handle it, He can.” This made sense to me.

The rabbi went on to tell us a story that did not make too much sense to me at the time.  He told us about a rabbi and his wife who were walking back from their son’s funeral.  The wife asked her husband, “what now, what do we live for?” The husband answered that we live for our living children and to carry on the memory of our son.  Tragically, the next child of this couple dies.  And once again, walking back from the funeral the wife asks her husband, “what now, what do we live for?” The husband gives the same answer, “we live for our living children and to carry on the memories of our sons.”

The story goes on until the couple has walked back from the funerals of all their children. The wife once more asks, “what now, what do we live for?”  The husband says we are to carry on the memories of our children and we are reminders to everyone else in the village to be thankful for what they have.

My initial response to this story was, “why us?  Why do Evan and I have to be the reminders?  Why can’t we just have Sawyer back?”   Over the years my thoughts about this story have changed.  I know that we cannot have Sawyer back.  I know that we will always carry on Jake and Sawyer’s memory.  Evan and I did not choose this journey but here we are – and I may never truly understand why.  I do know Jake and Sawyer do remind us to hug the twins a little tighter and to appreciate what we do have.

“I know God will not give me anything I can’t handle. I just wish He didn’t trust me so much.” Mother Teresa

 

October – Pregnancy and Infant Loss Month

October 12, 2014 at 9:08 pm | Posted in Grief, traditions | 4 Comments
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October, in addition to being Breast Cancer Awareness month, is also Pregnancy and Infant Loss Month.  In 1988, President Ronald Reagan issued a Presidential Proclamation making it a national event.  This year the Governor of Georgia also wrote an official proclamation making October Pregnancy and Infant Loss Month.

Across the world there are many walks to remember.   Families and friends walk to remember their little loved ones.  The walk also symbolically joins people who are working towards raising awareness of perinatal loss and care.

The year before Jake died, 10 years ago, three bereaved mothers in Atlanta started the Atlanta Walk to Remember.  Last weekend we walked for the 9th time.  Originally, Evan and I walked to remember Jake.  In 2007, we were lucky enough to walk while pushing the twins in their stroller.  Starting in 2010, the 4 of us have walked together every year to remember Jake and Sawyer.   The walk this year had the  biggest turn out yet.  It was in a new location and it was a very special day.

This was also the first year that one of the twins had an activity conflicting with the walk.  One of the twins had a flag football game.  Evan and I decided to talk to him about it and give him a choice.  I was a bit surprised, but maybe I should not have been –  he decided to go to the walk.  He said “I can play in the game next week.”

Each week in his 2nd grade class they write the “Weekend News.”  Here is his from last week:

weekend news

In case you cannot read this, it says “My dad’s a[u]nt came over.  I went to the walk to rem[em]ber. With my spicey monky.  I went [to] the walk to rem[em]ber bec[a]use two of my brothers died.  I had a good walk.”  And so did we.

 

The Bad News and The Good News

September 8, 2014 at 10:45 pm | Posted in Grief | 7 Comments
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The BAD news –  – Jake and Sawyer’s nameplates/headstones are officially rusting (not sure if rusting is the right word but see the picture below).  We spoke to the cemetery people and apparently the manufacturers did not put the correct finish on (or, they completely forgot the finish).  So, this is what it looks like at the moment:

rusting

Do you see the border rusting (or peeling away)?  The letters are starting to go too.  It makes me crazy.  We spoke to the nice people at the cemetery today.  They are going to fix it. The nameplates/headstones and the granite will all be replaced AGAIN.

The GOOD news – –  As part of their Fall collection, Method brought back Rice Milk & Mallow (the scent that reminds us of Sawyer).  And instead of just letting us find it in the store, they sent us all of this!

METHOD IS THE BEST!!

METHOD IS THE BEST!!

The Happy and The Sad

August 26, 2014 at 8:14 pm | Posted in Grief, Jake, life after loss, Love | 10 Comments
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The happy and the sad are so closely entwined during the month of August that I have whiplash.  Jake’s birthday, my parent’s 50th wedding anniversary!!, more yahrzeits, more birthdays and tomorrow will be Jake’s death day.  I know there are only so many days in a year so birthdays and anniversaries have to overlap at times but August for me has overwhelming extremes.

At 6:14 am tomorrow, it will be 9 years since we last held Jake.  The day after will be the anniversary of his funeral.  And all the days after that will continue to be bittersweet but maybe one day we will hold sweet Jake again.

Family Picture - August 27, 2005

Family Picture – August 27, 2005

 

Dear Jake

August 14, 2014 at 9:14 pm | Posted in Grief | 10 Comments
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Dear Jake,

today you would have been 9.  do you know how much we miss you?  i do not have the right words at the moment to tell you.  in fact my words and thoughts have been stuck for awhile. i guess you know this already.

i just want to tell you happy birthday baby boy.  love and miss you so very much. xoxo

Comment for a Cause

August 10, 2014 at 11:58 pm | Posted in Grief, Jake, life lessons, Love | 1 Comment
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Jake’s 9th birthday would/should have been later this week.  I am not sure that we will ever know why Jake left us so soon but I do know that Evan and I would have done anything we could have to prevent it from happening.

Unlike Jake, every twenty seconds, a child dies from a vaccine-preventable disease. Every twenty seconds, more parents are living in a world without their child/children. I do not want any parent to lose a child to a preventable disease because they did not have access to a medication.

Heather Spohr has partnered with Shot@Life, a campaign of the United Nations Foundation, to help provide life-saving vaccines where they are most needed. For every comment on Heather Spohr’s Post “A Chance For Health” or social share post received during the month of August, Walgreens will donate a vaccine to a child in need around the world. 

Every child deserves the opportunity to have happy and healthy firsts.  For Jake’s 9th birthday please consider clicking on this link and commenting on Heather’s post .  Every comment gives another vaccine to a child who needs and wants one.

 

how do you live in a world without your child/children?

June 28, 2014 at 8:28 pm | Posted in Death, Grief, life after loss, Love | 5 Comments
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I honestly do not know.  I feel like after Jake and then Sawyer died I should have some words of wisdom.  . .but I don’t.

I find myself looking at other parents.  Wondering what it would be like to watch all of your children grow up.  I know that everyone has their own tragedies – they are different but difficult all the same.  I know that I am lucky to have the privilege of being a parent to each of my children and to have held them (even if for only a short time).

Time does not make it better – just different.

I do not believe that Jake and Sawyer are in “a better place.”  I do not know where they are but I wish it were with us.

I know that there is not a path to “get over” the death of your child/children.  It is not the same for everyone.   Some of us do not talk about our children at all.  Some of us advocate for a cure for their cause of death.  Some of us write about them.  All of us want our children to be remembered.

quote - teach the world about my child

 

Do you think the twins have been talking to ABC?

January 20, 2014 at 10:36 pm | Posted in after death?, Grief | 6 Comments
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The other week the twins were playing pretend.  They were discussing their pretend characters and how they were born, lived and then died.  They both then agreed that if they truly believed in the “spirits” of the dead characters they would come back to life.  There was some further discussion that if we believed in Jake, Sawyer,  Mom Mom and Grandpoppy’s “spirits” then they too could come back to life.  I tried to explain that life/death does not work that way (no matter how much I really want it to be different).  They disagreed and I decided rationalizing with 6 year olds might not get me very far on this topic.

A few days ago, I saw a preview for the new show Resurrection on ABC.  The lead in is “Imagine the impossible.”  In case you have not seen the preview, the cliff notes version is that deceased people are somehow returned to their families.  A boy, who died at the age of 8, is returned to his parents 30 years later.

The twins and ABC have come up with a show that does imagine the impossible.  Every person who has lost a loved one has at some point hoped beyond hope that person would be magically be returned to them.  So, now the big question is to watch or not to watch?

2 of ABC's future writers?

2 of ABC’s future writers?

A resolution (not the New Years kind)

January 2, 2014 at 9:14 pm | Posted in Cemetery, Grief | 3 Comments
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I found out that my friend at the cemetery might have made the call to get Jake and Sawyer’s markers fixed.  I saw him the other day and asked him if he had anything to do with the new markers.  He would not say one way or the other, but I said thank you and I gave him a big hug just in case.

He explained to me that the granite that the markers rest on and the markers themselves are made at the same time.  When Sawyer died we buried him next to Jake, but in the same full-sized plot.  There were no issues with the headstone following Sawyer’s funeral because we did not have Sawyer’s marker added until 2 years later.  When we did add Sawyer’s marker the granite had to be replaced to allow for the 2 markers instead of just Jake’s.

The bolts that held the markers to the granite were not an exact fit which apparently is why the markers moved and shifted.  The bolts have all been replaced now.  However, there is a chance that the markers will shift again because the granite and the markers were still made at different times.  If the markers move again, the next fix would be to replace the entire granite and both of the markers (then the granite and both markers will be made at the same time – and should fit together without being able to shift).

Even with all of these logical solutions, I still like the idea that Jake and Sawyer are playing practical jokes on us.

Wishing you all a Happy 2014!

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