“Der Mentsh Trakht Un Got Lakht” (people make plans and G-d laughs)

September 3, 2018 at 3:58 pm | Posted in Grief, Sawyer | 4 Comments
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A very wise man, my grandfather, always used to say “mentsch tracht, Gott lacht.”   For those of you (like me) who do not speak yiddish this means “men make plans and G-d laughs.”  I have updated the saying just a little to “people make plans and G-d laughs.”

Evan is sick and he needs a double lung transplant (he never smoked, doctors do not know the cause but cannot stop the further deterioration of his lungs).

After Sawyer died we all had a bunch of tests.

Doctors always thought Evan had really bad asthma that just did not respond well to medicine.

It turns out not to be just (or really) asthma, at least not anymore. His lungs are deteriorating and it presents as COPD and emphysema.   He never smoked and his sister has a rare lung disease that is female specific (Evan was tested and doesn’t have that particular disease).

We went to Denver Jewish and NIH in the hope to figure out what it is and to stop it. The doctors told us they could not figure out what it is or stop it.  Eventually Evan’s only option would be the double lung transplant.

He was status quo for a bit and we were hopeful the transplant would not be until the twins were much older.

However, the last few years he has really declined and it has been tough. He needs to be listed for the double lung transplant now.

Evan has never wanted people to think of him as sick.  So generally, he has kept this from people, and had me keep it secret as well.  But now, there’s no longer a point in that.  He has told his work (who have been great!) and we are now okay to tell everyone.

Because updating everyone can become exhausting and difficult, we’ve set up a CaringBridge site where we can post updates that everyone can sign up to access.  It may be a bit less personal than calls and emails, but it’s more practical and realistic, especially as things move forward.

Caring Bridge

Please DO NOT feel obligated to donate to CaringBridge or anything. This is just to make communication easier. Also, I have been told that CaringBridge doesn’t do much with your signing up with them — an occasional email seeking support, but otherwise, your email address doesn’t go anywhere. So, I hope that’s okay.

We appreciate all the support, prayers and help everyone has always shown us.  Thanks so much.

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Sawyer and the strawberry

December 28, 2017 at 4:58 pm | Posted in Grief, life after loss, Love, Sawyer | 6 Comments
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December 26th is the date on Sawyer’s death certificate. I am not sure when exactly he died but Evan and I kissed him good night for the last time on December 25th.

No one ever really knows how long we have between birth and death. I am very thankful for the time we did have with Sawyer.

Buddhist story:
“A man traveling across a field encountered a tiger. He fled, the tiger after him. Coming to a precipice, he caught hold of the root of a wild vine and swung himself down over the edge. The tiger sniffed at him from above. Trembling, the man looked down to where, far below, another tiger was waiting to eat him. Only the vine sustained him.

Two mice, one white and one black, little by little started to gnaw away the vine. The man saw a luscious strawberry near him. Grasping the vine with one hand, he plucked the strawberry with the other. How sweet it tasted!”

There are many interpretations of this story.  I like to think of the strawberry as the present.  One of the tigers is birth and the other death.

I wish I had more time to spend with Sawyer.  If I had known that time (and the tiger of death) were present and against us that Christmas night when we kissed him goodnight, I am sure that I would have never stopped kissing him.  Love and miss you sweet Sawyer.

Sawyer

Atlanta Walk to Remember 2016

September 28, 2016 at 8:18 pm | Posted in Grief, Jake, Love, Sawyer | 5 Comments
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Atlanta Walk to Remember 2015

Losing a child is one of the most devastating and lonely events which can happen to a human being.   I wish that none of us lived in a world without our child/children.  However, the reality is that parents from every religion, class and country have outlived their children.

Every year since Jake (and then Sawyer) died we have walked in the Atlanta Walk to Remember.   It is an event to connect parents and families together to express grief and remember our babies, and to raise awareness.  It is not a fundraiser.

It is just a time to remember our lost children together.

The 12th Annual Atlanta Walk to Remember is the first Sunday of October.  For more information about the walk in Atlanta click here.  For information about walks and events in other locations click here.

Research & Rainbows

July 22, 2016 at 4:44 pm | Posted in Grief, Jake, Sawyer, silver lining | 2 Comments
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Evan and I have spent the past few days at the March of Dimes national conference. We met amazing people and other family teams from all over the country committed to the cause of healthy babies.  We heard doctors speak about the research that is being done to lower the alarming rate of infant mortality.

Every year 23,000 babies in the United States of America do not live to celebrate their first birthday due to prematurity alone (this number does not include still born babies or babies who die due to known or still unknown birth defects and genetic conditions).

Jake and Sawyer will forever be a statistic of infant mortality from the years 2005 and 2009. I cannot change those facts.

I can commit to doing whatever I can to help reduce those 23,000 deaths of babies born too soon. I do not want any other families to stand by/watch their child/children take their last breath.

In one discussion at the conference, the topic of “Rainbow Babies” – babies born to families after the prior death or stillborn birth of a child – came up. I am so thankful to the March of Dimes’ doctors, researchers and volunteers.  Without all of their hard work ours and many other families’ rainbow babies may not be here.

As I have written about before, the twins and I are always searching for rainbows.  We have not had a rainbow baby after Sawyer (he was a rainbow himself, of course), but perhaps our rainbow is a part of lots of other little babies we are helping through the March of Dimes.

Somewhere Over the Rainbow

The way I see it, if you want the rainbow, you gotta put up with the rain.  – Dolly Parton

A “rainbow baby” is a baby born following the death of your child.  Urban Dictionary defines a rainbow baby as the following:

“In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

The storm (pregnancy/child loss) has already happened and nothing can change that experience. Storm clouds might still be overhead as the family continues to cope with the loss, but something colorful and bright has emerged from the darkness and misery.”

After Jake died Evan and I both knew that we wanted to try to become parents again.  I mistakenly thought that after your child dies you should get some sort of “get a baby free pass”.  There was no pass for us.  When we did start trying again we found ourselves on the roller coaster of infertility.  We started with cycles of injectables.  We moved onto 6 rounds of IUI’s (think turkey baster if you are not familiar with this term).  Finally after 2 IVF cycles we were so very lucky to have our own rainbow babies in July of 2007.

In the fall of 2009 we once again had a rainbow baby.

Who knew another storm would come so soon?  I am trying to learn from the twins how to look for rainbows everywhere.  Some days it is harder than others to find any light through the darkness.  The twins are pretty good teachers because the other day I looked out of the office building where I was working and this is what I saw. . .

After a hurricane comes a rainbow – Katy Perry

 

 

Mother’s Day Marketing

May 12, 2016 at 11:10 pm | Posted in Grief, Jake, life after loss, Sawyer | 6 Comments
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As I have done every year since Jake died, I went to the cemetery on Mother’s Day .  It is a very busy day at the cemetery, possibly the busiest day all year.  I understand that the marketing people want to make the most of the day.  There is always a little table set up.  Last year they gave out gift bags.  The year before there was a Mother’s Day cookout (along with free t-shirts).  This year they opted to give out a survey and a rose.

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I do not have any better ideas for their marketing team but I do appreciate their effort.  Death is a part of life that is difficult to talk about.  I appreciate their efforts to help grieving family and friends.   I think I will write on the survey that a flower and a survey are better than a cookout at the cemetery but I do wonder what they will come up with for next year.

 

Mother’s Day (& may the 4th be with you all)

May 4, 2016 at 10:04 pm | Posted in Death, Grief, Jake, life after loss, Love, mother, mourning, Sawyer | 12 Comments
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There is not a day that goes by that I do not think of Jake and Sawyer, but some days are harder than others.  Mother’s Day is one of those days.  Logically it is just another day.  They are both gone every. single. day.  It is not like the first days, weeks and months after they died when the tears so often streamed down my face without me even realizing.  Now most of the time my tears are tucked farther away.   The sadness and the joy of loving Jake and Sawyer is a part of me.

I know I am not alone.  There are so many other mothers in this club with me.  There are mothers who this is their first Mother’s Day without their child (or maybe it is the 2nd or 22nd since their child died).

There are also mothers who have died leaving behind their children.  This is perhaps their children’s first Mother’s Day without their mother (or maybe it is the 2nd or 22nd since their mother died).

There are motherless mothers and motherless fathers. 

There are spouse’s who are filling the role of both parents on Mother’s Day.

Death is part of life.  And no matter how hard some days can be life goes on.

As I have already written, Mother’s Day is not my favorite day.  I try to focus on the 4 positive pregnancy tests and the 4 live births.  I also try not dwell on the 2 emergency C-sections, the NICU, the miscarriage and the 2 deaths.  The truth is that all of these events have made me a mother.

I know that this day is hard for so many.  There are the other mothers in the club whose arms will also ache to hold their children.  There are others who are missing their mothers, grandmothers or partners.  I send hope and hugs to you all.

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thank you so much and a bit of happy

March 1, 2016 at 6:36 pm | Posted in Cemetery, Jake, Love, Sawyer | 3 Comments
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Last week I went to the cemetery and someone left flowers for Jake and Sawyer!  I have not been able to figure out who left them but I want to thank you so much for being so thoughtful and for remembering Jake and Sawyer.

A bit of hope

February 26, 2016 at 5:48 pm | Posted in Grief, life after loss, Love, Sawyer | 5 Comments
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Sawyer’s pathologist emailed in 2011 that “none of the genetic-DNA mutations that are known to be associated with/responsible for abnormal heart rhythms has been identified in Sawyer.”  No one knows what caused Sawyer’s death.  I try not to think about this fact often but about once a year Evan or I email Sawyer’s pathologist to touch base.  The response is always kind but does not have any new information.  However, this year the doctor wrote back that in 2010 they had “sequenced a limited number of genes and nothing was found.  We could go back and do whole exome sequencing” again (with 2016 medical advances). 

This email gives me a bit hope for so many reasons.  One, the doctors have not forgotten about Sawyer.  Two, there is the slightest chance that one day we might know what caused Sawyer’s death.  This will not bring him back but maybe it will prevent another family from losing their child. 

holidays and hope

December 30, 2015 at 10:44 pm | Posted in Anniversaries, Grief, life after loss, Sawyer | 7 Comments
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The anniversary of Sawyer’s death (the Jewish yahrzeit and the English date) were both this past week.  I know that these anniversaries can be tough for me so I try to keep extra busy.   I have been volunteering for an organization called Second Helpings.  Restaurants, grocery stores, corporate dining halls, farmers markets and schools with a surplus of food are connected with shelters and food pantries.   I signed up as a substitute driver for a few shifts over the holidays.  The twins are on vacation from school so they helped too.

It is just basically driving and loading/unloading the food.   The twins sat in the car listening to their books on CD while I navigated from the store to the shelter.  All was going fine until I realized that the drop off location was around the corner from the Atlanta Medical Examiners Office.  After the emergency room this is the building where Sawyer’s body was taken.  Evan and I went there to meet with one of the pathologists a few weeks after the autopsy.  All my attempts to distract myself failed as soon as I saw that building.

I miss Sawyer on the anniversary of his death, on holidays and every day.  I know that this season can be hard for a lot of people.  I wish I could make things easier for everyone but since I can not I send you all hope and hugs.

The only outfit I bought for Sawyer

 

 

Six

November 17, 2015 at 9:58 pm | Posted in Grief, Sawyer | 8 Comments
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Sawyer

Happy birthday sweet Sawyer!

I have no words today for how much you are loved and missed.   So i am borrowing the ones from your headstone:

There are stars so far away we only see their light long after they are gone.  Their memories keep shining ever brightly though their time with us is done. 

I will look for you in my dreams.  Love you always and forever.

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