Breathing a sigh of relief

May 30, 2019 at 8:29 pm | Posted in Grief | 5 Comments

The lung phone rang today with the news of new lungs for Evan!

It might be a long road ahead of us but we are on the post transplant road!!

It has been a long day but on the flip side it has flown by and I am pretty sure I am living in the twilight zone.  But so thrilled to be writing that I will be sleeping on a couch in the Johns Hopkins ICU with Evan and his new lungs.  
I will write more later but the surgery went the best that we could have hoped.  Tonight we are so thankful and thinking about the young man and his family who is giving Evan the chance for a new life.   xo

https://www.caringbridge.org/visit/evanpontznewlungs/journal/view/id/5cf073753f0a03c3438b46a4

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Happy Earth Day, the audacity of Hope (& if you are looking for my lipstick it is in the freezer)

April 22, 2019 at 8:54 pm | Posted in Grief, life lessons, Love, silver lining | 7 Comments
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Happy Earth day to you all!  I found the picture below in my daughter’s room this morning.  It made me so happy and hopeful.  She said I could post it as long as I give her credit.  All artistic credit goes to @lyssa_and_art on instagram.

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As many of you know Evan, the twins and I have been waiting for him to get a call for new lungs.  The waiting is excruciating.  Despite everything, Evan continues to hope.  Not only does he hope for new lungs but he also still dares to hope that no parent will have to outlive their child/children.  He is still on the board of the Atlanta March of Dimes.  Although our family will not actually be walking this year Evan has not given up.  Jake’s Journey and Sawyer’s Strides is still hoping.

Thank you to all those who supported our 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.

As for me, i am still hoping too.  Hoping for the earth.  Hoping for Evan’s new lungs.  Hoping that no parent has to bury their child/children.

I am no longer hoping to find my lipstick because after searching for a week I found it in the freezer.  Seems like as good a place as any to keep it.

 

Premature Babies. An assignment in Empathy.

December 14, 2018 at 9:34 pm | Posted in Grief | 8 Comments

My son Fletcher was given a school assignment to create a project that focused on empathy and raised awareness about an issue.

Since his brother Jake was born prematurely (14 weeks early) and died at two weeks old,  he focused on premature birth. He decided to make this comic. It is dedicated to Jake and all the other beautiful babies who are born before their time.

 

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“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.

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.

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August 14, 2018 at 7:36 pm | Posted in Death, Grief, Jake, Love | 5 Comments
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Happy birthday Jake! I am so very thankful that you were born. Your dad and I miss you every day, but some days are just a bit harder.

What kind of teenager would you be? Would you be testing my and your dad’s patience? What would you look like? Would you have had a bar mitzvah?

There are so many questions that will never be answered. However, I do know that your dad and I love you. We miss you today and always.

Happy birthday sweet baby boy. I will look for you in my dreams.

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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Please Help Save Lives

February 11, 2018 at 6:52 pm | Posted in Grief, Love | 3 Comments
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Jake and Sawyer’s short lives have taught me many tough lessons.  One, which I already “knew” (but now know with much greater depth and understanding) is how terrible losing a loved one really is, whether it is a child, a parent, a spouse, a grandparent, or anyone who you are close to.  That loss and the grief that comes with it is so powerful and completely life-altering.

A family that I hold dear to my heart experienced an untimely loss of a beloved son, husband, brother and uncle, a man who always showed kindness not just to me and my family, but to everyone he encountered in his own community and in his job as doctor.   His death was so preventable and such an unnecessary tragedy — he was riding his bicycle with a riding group (he was an avid and well-trained rider), when a driver hit him from behind.  The driver was distracted by his cellphone.

We all get distracted by our phones and other devices, but there is no reason for driving while distracted.  Whatever that driver was doing could have waited — or if it was so important, he should have pulled over and handled it.  But when you are driving, you put yourself and everyone around at risk if you do not pay full attention to the road and your driving.

If you are ever asked to “please help save lives,” you are likely to think, “of course, but how?” Well, the family of that wonderful man, and particularly his wife, are trying to make sure that no other family suffers a loss such as they have, and it creates a simple way for you to truly help save lives.  In Georgia, legislation has been proposed to help prevent distracted driving.  House Bill 673 sets up commonsense provisions and rules, and penalties that hopefully would make anyone think twice before allowing themselves to become distracted by their phone or other device while driving.  They are pushing hard to see the legislation become law, and have gotten plenty of local media coverage to try to convince everyone to support this bill.

I am on board and I have contacted my elected officials to tell them to please help save lives — please pass HB 673.  If you are in Georgia, I hope you will contact your legislators in the state house and senate and tell them you support this bill too.  You can Find your Legislator at this link.  And if you live elsewhere, contact your elected officials and tell them they should be doing more to put a stop to distracted driving too.  We have already lost far too many wonderful children, parents, spouses and loved ones to distracted driving.  We can all help save others from knowing what I, and so many others, already know all too well.

 

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