A bit of hope
February 26, 2016 at 5:48 pm | Posted in Grief, life after loss, Love, Sawyer | 5 CommentsTags: baby loss, death, death of a baby, hope, life after loss, Mayo Clinic, pathology, perspective
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.
February 19, 2016 at 2:05 pm | Posted in Grief, hospital, life after loss | 8 Comments
Tags: baby loss, child loss, death of a baby, life after loss, motherhood, post traumatic stress disorder, thoughts, unexplainable
On President’s Day I took the twins to a go-kart, bowling, ninja warrior play place. Everyone had a fantastic time until one of the twins decided that he was a much bigger ninja warrior than he actually is. He hurt his ankle and I took him and his sister home.
The next day he was still limping and still on winter break. I decided I should take him to the doctor while he was home and preempt the call I might get from school about his limp. After seeing the doctor she decided we should go get an x-ray.
At this point in the day it was close to rush hour in Atlanta. The closest place to have the x-ray is the children’s hospital across the street from our pediatrician’s office. I drive past the hospital where Sawyer died all the time. I know that revisiting certain places (like the place where Sawyer was pronounced dead) should be avoided. I was diagnosed with post traumatic stress disorder after Jake died and then again after Sawyer died.
I decided PTSD or no PTSD we were going for the x-ray. And so we did. One twin went into the x-ray room by himself while I stood with his sister in the hall. I tried with every ounce of my being to shut out the thoughts of standing in this hospital hall staring at the closed door to the room where Sawyer was taken.
A few minutes later the door opened. I held onto a hand of each of the twins and left the hospital.
Little boy with just a sprained ankle and a mom who would like to wrap him and his sister in bubble wrap.
Hope is a 4 letter word
January 22, 2016 at 4:44 pm | Posted in Grief, life lessons, Love | 12 CommentsTags: adoption, failed adoption, life after loss, perspective, thoughts
In 2015 we had a failed adoption.
Evan and I thought about adoption since we started talking about trying to have more children after Jake died. We started infertility at that time too. We were so lucky, fortunate and blessed to have had the twins and Sawyer with the help of lots of medical professionals.
In 2013 we revisited and moved forward with the adoption process. There were a lot of rejections along the way but in August 2014 we were picked by a birth mother. She was young, homeless and stated that the birth father’s whereabouts were unknown. Evan and I met with her once for lunch. On a separate occasion I was able to go to a doctor’s appointment with her.
On New Year’s Eve day we got a call that she was in labor. Evan came home from work. We told the twins and started to pack the car. I took our dogs to be boarded with the vet. By the time I got home we had gotten another call telling us not to leave quite yet. The birth mother started to have second thoughts and a potential father had entered the picture.
The baby was born on 12/31/2014. Evan and I spent the next few days on a horrible roller coaster waiting for the birth mother’s decision. A few days into 2015 we were told that she had decided to parent the baby.
Over the last year I have gone from sadness to anger (with lots of emotions I cannot identify in between). I have rationalized that we helped this baby and his mother but he is not ours. He is being raised by his mother, who, with help from us, is no longer homeless. Hoping 2016 brings good things for everyone.
holidays and hope
December 30, 2015 at 10:44 pm | Posted in Anniversaries, Grief, life after loss, Sawyer | 7 CommentsTags: child loss, dark days, death of a baby, holidays, hope, Jewish customs, life after loss, perspective, Sawyer, thoughts
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.
unplugged
December 18, 2015 at 5:14 pm | Posted in Grief | 7 CommentsTags: life after loss, perspective, post traumatic stress disorder, thoughts
So, I have been trying to unplug Evan. He spent part of the other week in the hospital due to pneumonia and breathing complications. His doctor admitted him from the office but Evan waited 8 hours for a room at the hospital. Hour 7 when a guy started smoking an e-cigarette in the waiting room I started to think I would just take Evan home. Finally, they called Evan’s name and an orderly wheeled him towards his room. When we started going through the maternity ward Evan asked the guy if there was any other way to get to his room. The guy responded “no” and I was not sure if I was going to start crying or laughing.
Evan spent a few days in the hospital and I did not take any babies while passing through the maternity ward to visit him. Evan is better and back to work. Evan and the twins have gotten sick before – I know that sickness (and hopefully getting better) is part of life. I am just not as good at handling it – maybe if Jake and Sawyer had not died I would be better with these situations. I will never know.
Remembering
October 20, 2015 at 9:36 pm | Posted in after death?, Jake, Love, Sawyer | 6 CommentsTags: child loss, death of a baby, Jake, life after loss, new not so normal, Sawyer, unexplainable, what i have learned in the 10 years since Jake died
For remembering Jake.
And many thanks for remembering Sawyer.
I am forever grateful to all who keep Jake’s and Sawyer’s memories alive.
Life goes on (as it should) but another one of the important lessons I have learned in the 10 years since Jake died is I am no longer the same person. Some call it their new normal. I do not think there is anything normal about outliving your child/children.
As a surviving parent I am left to make sense of the unexplainable. Some say that we all have purposes in life which we fulfill throughout our lifetimes. So does that mean that Jake and Sawyer just fulfilled their purpose very quickly and therefore they had very short lives?
I wonder what were their purposes? Are Evan and I supposed to help or continue their purposes? I may never know the answers to these questions but I do know that I want Jake and Sawyer to be remembered.
The other day there was a discussion in the back seat of our car about ages of the twins’ friends and their siblings. One of their friends has a brother who was born in September of 2009. Another friend has a little sister born in December of 2009. After we had dropped off their friends, Evan and I talked to the twins about their little brother, Sawyer, who was born in November of 2009.
Remembering
By Elizabeth Dent
Go ahead and mention my child,
The one that died, you know.
Don’t worry about hurting me further
The depth of my pain doesn’t show.
I’m already crying inside.
The tears that I try to hide.
I’m hurting when you just keep silent.
Pretending he didn’t exist.
I’d rather you mention my child.
Knowing that he has been missed.
You ask me how I was doing.
I say “pretty good” or “fine”.
But the healing is something ongoing.
I feel it will take a lifetime.
what i have learned in the 10 years since Jake died
August 31, 2015 at 9:44 pm | Posted in Death, Grief, Jake, life after loss, Love, why I write | 11 CommentsTags: anniversaries, child loss, death of a baby, deathiversary, life after loss, new not so normal, perspective, post traumatic stress disorder, premature birth, what i have learned in the 10 years since Jake died
Dear Jake,
Another August has come and gone – the 10th August since you left this world. I honestly was not sure that I would make it – 10 years seems like an eternity at times but I still find it so hard to believe that it has been that long since your dad and I last held you.
The first thing that I learned is that I will make it through the days, months and years without you. I do not like it and it is excruciatingly hard. But, your dad and I were not given a choice. We are still alive.
I started writing this blog when you were gone for 5 years. Five years also seemed impossible. You would have started kindergarten and your brother Sawyer had died so unexpectedly 8 months earlier. A therapist and a few friends suggested I try writing. I thought why not – maybe I can help myself and possibly help others.
I think I had visions that one day I would change the name of the blog to something other than a mourning mom. It turns out 5 years later I am still a mourning mom. I have not found a cure for hydrops or premature birth. In fact, we still do not even know what caused Sawyer’s death. I have not started a non-profit or a race. And, I still have days when I cannot stop crying because I miss you and your brother so much.
I wanted to write what I have learned in these 10 years living in this world without you. I thought I could write one post to sum it all up but it is not quite that easy. So, this my sweet Jake will just be part 1. I will write to hopefully help others through their own journey. And, even if I cannot help others I know that in another 5 years I will look back on these posts to help myself figure out how to survive the 10 year deathiversary of your baby brother.
Dear Jake
August 14, 2015 at 11:18 pm | Posted in life after loss, Love | 8 CommentsTags: baby loss, birthday, child loss, death, death of a baby, gratitude, Jake, life after loss
Happy 10th birthday sweet boy. Thank you for making me a mother. I have tried really hard today to focus on how lucky we are to have had you in our lives even for such a short time. The doctors and the statistics were not in favor of us spending any time on this earth together. You beat the odds and you were born alive. Then the doctors told us that you most likely would not live through the night – but again you proved them wrong. You were such a brave and strong fighter. Thank you for fighting so hard and for making Evan and me parents for the very first time.
I am trying to be brave and strong too but 10 years is an impossibly long time to live in this world without you. I miss you today and always. I hope that wherever you are you know how much you are loved and missed.
a special project
July 22, 2015 at 10:36 pm | Posted in Death, Grief, hospital, life after loss, Love, NICU | 12 CommentsTags: baby loss, death of a baby, H.E.A.R.T.strings Perinatal Bereavement Office at Northside Hospital, Jake, life after loss, NICU, Sawyer, ways to honor the memory of your child
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.
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.
A Celebration of Life
July 8, 2015 at 12:00 am | Posted in Grief, life after loss | 8 CommentsTags: death, family, grief, life after loss, perspective, thoughts
We spend precious hours fearing the inevitable. It would be wise to use that time adoring our families, cherishing our friends, and living our lives. Dr. Maya Angelou
My amazing cousin’s mother (who was also my cousin) wrote this poem in a comment to one of my posts last year. She peacefully passed away a few days ago after being diagnosed with pancreatic cancer in May. She did not want a funeral and followed the “honor me not by mourning my death but by celebrating my life” philosophy.
So on Monday, there was not a funeral but a memorial service/celebration of her life. My amazing cousin and my mom spoke – it was a beautiful tribute.
We decided that the twins should come to the celebration. They were not exactly at the service but they were running in circles in the entry way of the funeral home. As I left the service they both stopped running and came to hug me. One said “Mama, we will behave if you stop crying.” The other one said “Mama, you have to focus on the positive things.” As we drove away I stopped crying and I tried to explain to them that I am sad, I might cry again but I would try to focus on the positive.
“We all have life storms, and when we get the rough times and we recover from them, we should celebrate that we got through it. No matter how bad it may seem, there’s always something beautiful that you can find.” Mattie Stepanek
Blog at WordPress.com.
Entries and comments feeds.
A Mourning Mom 