“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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Harriett R. Taylor

August 18, 2018 at 8:18 pm | Posted in Death, Love | 3 Comments
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In my family, August is pretty packed with birthdays, anniversaries and deathiversaries.  Today along with being Evan’s dad and stepmother’s wedding anniversary it is also the date when my Aunt Harriett died (21 years ago).

Although it has been over 2 decades, I can still feel the pit in my stomach that formed when I was told that she had pancreatic cancer.  I remember my parents were on vacation and I needed to call them to let them know this awful news.  I remember my hands shaking as I held the phone.

I was very lucky to have known Harriett Taylor, let alone to be her niece.  She inspired and helped me in ways that I wish I had been able to tell her during her lifetime.  I decided to go to law school during her judicial swearing-in ceremony.  I started volunteering at soup kitchens and food banks because she set the example of helping the poor and homeless.  She taught me the importance of sending thank you notes.

I remember my aunt’s mother pleading at her hospice bedside to switch places with her.  I learned that it is not possible, no matter how much you bargain, to trade your life for your child’s life.

My Aunt Harriett also taught me a lot about life, love and death.  Her oldest child’s (my cousin) birthday is on August 16 and her youngest child’s birthday is on August 20.  My aunt did not want to die on either of her children’s birthdays and she did not.  I truly believe that she willed herself to die on August 18.

The world is a better place because she was a part of it.

July is Bereaved Parents Month

July 10, 2018 at 7:30 pm | Posted in Grief | 6 Comments
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“We may look as if we carry on with our lives as before. We may even have times of joy and happiness. Everything may seem normal. But this, EMPTINESS is how we all feel, all the time”
~ John Maddox, for Bereaved Parents Month


(The artwork is called Melancholy by Albert György in Geneva, Switzerland)

I somehow did not know that July is bereaved parents month.  A big thank you to Susan for letting me know and sending me this picture.

Sending extra hope and hugs to all bereaved parents this month and every month.

Practicing Positivity

April 26, 2018 at 10:22 pm | Posted in Grief | 3 Comments
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It is nice to think about trying to make a positive change come out of a negative situation.  But no one can truly make the death of a child into a positive.  That pain never goes away.  This is my reality; our reality.  I miss Jake and Sawyer every day.  I ache for them always.  I cannot make their deaths positive.

I can, however, remember them and love them.  I can honor their brother and sister who are here with us, who also help us remember them.  And, I can try to prevent other children from dying.  I do not want any other families to have to live in a world without their child/children.

So, this coming weekend, I will try to do that by Marching.  Marching in memory of Jake and Sawyer, in honor of our twins (who march with us), and to support the March of Dimes which strives to help every baby be born healthy, so no parent will have to go through what we have lived through and live every day.

Thank you to all those who have already supported our March of Dimes, March for Babies team this year and in past years. Thank you also to the hospital where our kids were all born for matching funds so that $1 donated = $2 to March of Dimes.  The March of Dimes uses the funds on key research, education and outreach programs.  They do great work, and we appreciate all of your kindness and generosity.  If you would like to support Jake’s Journey & Sawyer’s Strides , and make sure my marching helps other families, please click this link.  Thank you so very much.

February 28, 2018 at 6:28 pm | Posted in Love | Leave a comment
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what to do when reality bites

May 4, 2017 at 8:18 pm | Posted in Grief, silver lining | 4 Comments
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Here is my reality – I will never be able to bring Sawyer and Jake back to life.  I will never hold Sawyer again.

I will never hold Jake again.

I cannot change my reality but I can help others.   I will do anything and everything I can to prevent other children from dying too soon.  I do not want any other families to have to live in a world without their child/children.

This weekend what I will do to try to help is walk. Thank you to all those who supported our March of Dimes, March for Babies 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.

 

 

Hope

April 18, 2017 at 2:18 pm | Posted in life after loss, Love | 4 Comments
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Some days hope is hard to find.  On my running route, I have discovered a few hints that there is always hope.  One time I stumbled upon this sign of hope:

And, on another run I came across this one:

The signs are on telephone poles but that is okay with me.   I will take hope however and wherever I can find it.

On my run the other day, I noticed that one of the signs had been painted.

I like to believe that I can still catch a glimpse of  hope even though it is now harder to find.

 

 

“Don’t cry because it is over. Smile because it happened.” Dr. Seuss

November 17, 2016 at 1:52 pm | Posted in life after loss, Love | 7 Comments
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Sawyer,
Today is World Prematurity Day so I am wearing purple in memory and in honor of your oldest brother Jake and all the other babies born into this world too soon.  Today is Georgia Gives Back day so I just drove food to a shelter and will be making donations in honor of you and your siblings.

Today is also the day that we welcomed you to the world! Today I want to celebrate wonderful little you.  Today I am going to read all the congratulations emails we received after you were born because last night I discovered your Dad kept them all (and I have never seen them).  Today I will give presents to your brother and sister for your birthday because there do not seem to be any rules on how to celebrate your 7th birthday without you – so,  I am trying to make up my own.  Today I will try to smile, not to cry (but please forgive me if I do).

Today you gave me the gift of being your mama and for that I am forever grateful to you my sweet Sawyer.

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Wave of Light 2016

October 18, 2016 at 7:00 pm | Posted in life after loss, Love | 5 Comments
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We lit our candles on October 15.

candles-2016

This year and last year I made the candles we lit.  I made candles that were given out at the Atlanta Walk to Remember.  There is not much I can do to lessen the pain that a bereaved parent carries throughout their lifetime.  I am hoping that the candle makes their path a little brighter (even if it is only for a little while).

quote - candle - 2015

 

 

Wave of Light

October 14, 2016 at 4:44 pm | Posted in life after loss, Love | 4 Comments
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wave-of-light

Tomorrow is Pregnancy and Infant Loss Remembrance Day.  As part of the day, everyone is invited to light a candle at 7 pm in all time zones, all over the world.  The idea is that if everyone lights a candle at 7 pm and keeps it burning for at least 1 hour, there will be a continuous wave of light.

Today and every day I miss Jake and Sawyer but tomorrow at 7 pm we will light candles.  This year I will once again hope that the light from all the candles will make the darkness of the unknown a little brighter.

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