All Hallows Eve
November 1, 2013 at 10:51 pm | Posted in Jake, Sawyer | 9 CommentsTags: child loss, Day of the Dead, death of a baby, Halloween, holidays, new not so normal, perspective, thoughts
October 31st is not only Halloween but it also starts the celebration of the Mexican holiday Dia de los Muertos (Day of the Dead). The tradition focuses on celebrating and remembering friends and family who have passed away. Unlike Halloween, the celebration honors those who have died with food, festivities and an elaborate altar. The observance is on November 1st and 2nd, which coincides with the Catholic All Saints’ Day and All Souls’ Day. November 1st is for celebrating children and infants who have died. It is called Dia de los Inocentes (Day of the Innocents) or Dia de los Angelitos (Day of the Little Angels). November 2nd is for remembering all friends and family no matter what their age. In some beliefs, it is a three-day holiday beginning on October 31st, All Hallows Eve, when some believe the souls of young children arise at midnight.
I have never made an altar but I am very thankful to one of my close friends who includes Jake and Sawyer’s pictures on her altar. Maybe one day I will try to make an altar. There is a part of me that wants to make Halloween (along with all days) extra fun and extra special for the twins because I cannot ever do these things for Jake and Sawyer. No worries, I do know that the twins deserve fun and extra special just because of themselves.
There is a house in our neighborhood that has crazy blow ups for every holiday. I try to drive the twins by the house often during Halloween. Here it is during the day:
Here is the house at night:
And here we are (minus Evan):
Happy Halloween!
Bereavement Training
October 24, 2013 at 10:14 pm | Posted in Grief, Jake, NICU, Sawyer | 6 CommentsTags: baby loss, bereavement training, child loss, compassion, death of a baby, gratitude, kindness, life after loss, new not so normal, ways to honor the memory of your child
Today I, along with several other parents, spoke to a group of nurses as part of their bereavement training. This is the second parent panel I have been a part of in the last few months and I have participated in several others over the years. At times, I find talking about Jake and Sawyer cathartic. I am always hopeful that sharing our story can somehow help others. After each of these panels I have come away with lists of suggestions for nurses and tips for NICU parents.
There is a common theme in all the stories. All bereaved parents want their child/children to be remembered. There will not be the lifetime of memories that hopefully other children will have. The stay in the hospital and every aspect of it is very often all the parents have. The doctors and nurses are big parts of these memories. The kindness and compassion of the medical professionals is so important. I am thankful that bereavement training exists.
No matter how small the baby is or how long the baby lived, parents want their baby treated like every other baby. They want to be treated like every other parent. One mom said she just felt like she was in the middle of a really bad Lifetime movie. We are all hoping that we can change the channel or wake up from the nightmare of outliving our child/children. Unfortunately, this is our reality. Thank you to all those who help us along our way.
Wave of Light for October 15th
October 15, 2013 at 5:12 pm | Posted in life lessons, Love | 5 CommentsTags: baby loss, child loss, death of a baby, miscarriage, Pregnancy and Infant Loss Awareness Day, Wave of Light - October 15th
Every October 15th is Pregnancy and Infant Loss Awareness Day. We remember our children every day but tonight we will light candles.
Spreading Awareness
October 6, 2013 at 9:14 pm | Posted in life after loss, Love, silver lining, why I write | 9 CommentsTags: Atlanta 2 Day Walk for Breast Cancer, Atlanta Walk to Remember, baby loss, child loss, death of a baby, hope, Jake, March of Dimes, new not so normal, ways to honor the memory of your child
This past weekend, I walked in one day of the Atlanta 2-Day Walk for Breast Cancer and in the Atlanta Walk to Remember.
In addition to walking, Evan has been talking as well. Last week he went to Capitol Hill with a group from the March of Dimes. They spoke to members of Congress about the importance of newborn screening and funding prematurity studies.
This week, Evan spoke at the Atlanta Walk to Remember. Below is his speech:
“Dad and Father”
I am the father of four children,
but I am “Dad” to only two kids.
Our six-year-old twins call me “Dad” or “Daddy”
– or sometimes other silly things, or things I won’t mention here.
Our first child, Jake, never left the hospital
and lived only 2 weeks.
He was born 14 weeks early
and with other ultimately unsolvable medical complications.
Our fourth child, Sawyer, was born happy and healthy
and came home with us.
But six weeks later, with no warning,
and for no reason that has yet been fully figured out,
his heart stopped working.
Neither Jake nor Sawyer ever got to call me anything.
My family and I grieve the deaths and loss of our boys,
as you all grieve the loss of your children and little loved-ones.
As their father, I grieve the loss of Jake and Sawyer’s childhoods,
the big moments that they were supposed to have but never will.
I grieve the loss of their chance to grow up, to flourish,
to become teenagers, young men, husbands and “Dads” themselves.
I grieve the lost ball games and trips and adventures we’ll never have.
I grieve all the missed hugs and high-fives.
I grieve even the cranky wake-ups and bedtime fits we know so well from our twins,
but never got to experience with Jake or Sawyer.
I grieve all the truly heart-warming bedtime snuggles
that will never happen with Jake or Sawyer.
Beyond all those missed tender moments,
I also grieve the loss of my belief that horrible things won’t happen to me or my loved ones.
I am all too aware now that they can happen to anyone – as they have happened to all of us.
It’s all I can do most of the time
to just hope nothing like losing Jake and Sawyer ever happens again.
As a father, I also grieve the loss of my once unshakable belief
that I could always protect my wife Lanie and all our children
from such terrible pain and anguish; that I can “fix” their problems;
that I can always make everything all better.
I know that I cannot make Jake or Sawyer all better or bring them back.
I’m not sure that grief is something a father can ever overcome.
Of course, I have learned that you do not overcome or get past grief.
You just go through it.
I hate that my family has to go through it too,
but thank heavens I have an incredible wife and wonderful kids
to travel along with me as I go down that path.
So I guess I will always grieve the loss of never being called “Dad” –
not even once – by Jake or Sawyer.
But that doesn’t mean I am not their father.
I am and always will be a proud father of all my kids,
no matter what they call me
or what they were never able to call me.
And, I am so very proud of Jake, Sawyer and the twins’ dad and father.
Weekend Walks
October 4, 2013 at 6:22 pm | Posted in life lessons, Love | 6 CommentsTags: Atlanta 2 Day Walk for Breast Cancer, Atlanta Walk to Remember, breast cancer, child loss, death of a baby, hope, life after loss, Pregnancy and Infant Loss Awareness month, thoughts, ways to honor the memory of your child
Do you know that along with Breast Cancer Awareness month that October is also Pregnancy and Infant Loss Awareness month?
There are so very many facts that I have had to accept are out of my control. At the top of the list are the facts that Jake and Sawyer are dead.
However, I am still here. I am going to do my best to bring awareness to Pregnancy and Infant Loss along with Breast Cancer. So, this weekend I am going to walk in the Atlanta 2 Day Walk for Breast Cancer and the Atlanta Walk to Remember. I will let you know how they go.
Hope that you all have a great weekend!
Written in Stone
September 22, 2013 at 9:38 pm | Posted in Grief, Jake, life after loss, Sawyer | 5 CommentsTags: cemetery, death of a baby, new not so normal, perspective
As I explained in this post, the bolts on Jake and Sawyer’s nameplates were replaced. I still do not understand what happened to the bolts. There was no construction in the area. No other recent funerals have been by their plot. I might have to add this to the long list of unknowns.
Maybe, as my very sweet cousin pointed out Jake and Sawyer are just being boys playing together and being mischievous. Or perhaps, Jake and Sawyer are just giving us other ways to take care of them. I do not know.
I do know that the grounds people found other bolts to secure the nameplates for the time being. They did explain that because these are not the original bolts they might not hold. This part I understand very well, if the nameplates move again we will have to reorder them both. If anyone is keeping count that will be the 4th nameplate for Jake and the 3rd for Sawyer.
I am okay with waiting to see what happens and I know that the saying is that “nothing is written in stone.” But ultimately, these nameplates are written in stone for Jake and Sawyer. They should be right.
The Other Baby
September 18, 2013 at 9:44 am | Posted in hospital, Jake, life after loss, NICU | 13 CommentsTags: #DPchallenge, baby loss, death of a baby, hope, hospital, life after loss, new not so normal, NICU, thoughts, writing challenge
“We can leave whenever you want to go.” Evan said for the tenth time.
“Not yet, I can wait a little longer.” I lied.
I was hot and I felt like the walls where closing in on me. So, not even 5 minutes later I ran out of the hospital. Evan followed me.
It was the first time we had been back to the hospital since the horrible day that Jake had died.
It started earlier that day. Evan and I were both home. Our fog of grief was interrupted by the ringing of the phone. He answered. I heard him say, “I am her husband whatever you need to talk to her about you can can tell me.” I could not hear the response on the other end of the call. Evan’s sad voice spoke once more, “Do you realize that our only child died last week and his funeral was just days ago?”.
Evan appeared with the phone in front of me. “It is a nurse from the hospital. She needs to speak to you.”
The one and only thing that entered my mind was that this nurse was calling to tell me that Jake was alive!! This has all been a terrible mistake. Evan and I are about to wake up from this nightmare. Jake is really waiting for us in the hospital. I grabbed the phone from Evan.
“There has been a mix up at the hospital.” said the nurse.
My mind and my heart were now both racing so fast that I could not sit still. “Okay.” was all I could manage to say in response.
“The milk that you had pumped for Jake was given to another baby.”
My mind and heart stopped racing. What!? I had been pumping milk since the day that Jake was born in the hopes that he would one day drink it. Evan would take the bottles of milk, label them and put them into this high security refrigerator in the NICU.
When Jake died we asked if we could donate the milk. Perhaps at least my milk could help another baby and help us to make some sense over Jake’s death. We were told that we could not donate the milk because I had been given pain medication after my C-section. Another loss.
Evan asked if we needed to come dispose of the milk. The nurses assured us that we did not have to worry about it – they would get rid of the milk.
Except, they did not. The milk was mistakenly given to another baby in the NICU. Now the parents of the other baby were understandably upset.
The nurse was calling because they needed me to come in for a blood test to verify that I was not on any illegal drugs when I pumped the milk. The other parents needed to know that the milk that their NICU baby drank was ok.
“Of course, my blood is ok.” I whispered as I realized that this call was not going to bring Jake back to us. Evan held my hand.
“I will come right now to take the blood test. I know that if we were those other parents we would want/need to know.” I hung up the phone.
Evan drove us the 3 miles back to the hospital where we had left Jake’s body just days before. A nurse met us out front and led us to a room far from the regular labor and delivery and the NICU. We were far, far away from any happy parents with their newborns. The hospital walls seemed to close in on us.
We waited in that room for the blood test. We waited for 30 minutes. “We can leave whenever you want to go.” Evan said for the first time. And, then we waited 30 more minutes. He repeated over and over that we could leave.
After 90 minutes I could not take it anymore. I ran out of the room. I did not ever take the blood test. I knew that there was nothing in my milk that Jake would not have been given had he ever drank it. So, I thought the other baby would be ok. Or, at least that if the baby was not ok it would not be from my milk.
I will never know for sure but every day I hope and pray that the other baby is alive, happy and healthy.
Odd but NOT Ok
September 12, 2013 at 2:26 pm | Posted in Grief, Jake, life after loss, Love, Sawyer, venting | 12 CommentsTags: baby loss, cemetery, child loss, death of a baby, grief, missing bolts, new not so normal, unexplainable
Dream
I am drawn quietly to his grave to check on him,
Just as I’d have been drawn quietly to his crib.
I trim the grass around his marker,
And dream of trimming bangs from his forehead.
I place flowers in his vase,
And dream of placing kisses on his cheek.
I hold his memory dear to my heart,
And dream of holding him in my arms.
Author unknown
I no longer have any way to physically take care of Jake or Sawyer. The best I can do is going to the cemetery and checking on their shared plot. I know that frequenting a cemetery does not work for some but it is something that I need to do.
Over the last month both Jake and Sawyer’s nameplates have been slightly shifting. I thought maybe the bolts were loose. I shift them back and feel better. Until yesterday.
I could not even shift the plates back. And, where are the bolts?! I do not understand.
I called the cemetery office and immediately broke down into tears trying to explain to the receptionist what I was calling about. Who calls about missing bolts from not just 1 but 2 of their sons’ headstones?! She finally understood me and agreed to send out a maintenance person.
No one can explain what happened to the bolts that should be securing the nameplates to the granite. However, they are both repaired for the moment. We are going to wait and watch to see what happens. I am so not okay with this.
Atlanta Walk to Remember
September 8, 2013 at 10:48 pm | Posted in Jake, life lessons, Love, Sawyer | 5 CommentsTags: Atlanta Walk to Remember, child loss, death of a baby, miscarriage, new not so normal, ways to honor the memory of your child
“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his/her parents is called an orphan. But there is no word for a parent who loses a child, that’s how awful the loss is!” Jay Neugeboren
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 babies together.
This year the walk will be held on October 6th. For more information and/or to register for the walk click the following link:
When the Walls Come Tumbling Down
August 26, 2013 at 6:14 pm | Posted in Grief, Jake, life after loss, Love | 4 CommentsTags: baby loss, child loss, death of a baby, Elisabeth Kübler Ross', Jake, new not so normal, old house, perspective, post traumatic stress disorder, premature birth
As I wrote about here, the house where I was pregnant with Jake was sold a few months ago. We had a room for Jake in that house but he never came home to it. There was a time after Jake died that I had such anger towards that room. I wanted to renovate it, destroy it or at least move far, far away from it.
My anger was not rational but it seemed very real to me at the time. Along with denial, bargaining, depression and acceptance; anger is one of Elisabeth Kübler Ross’ 5 stages of grief. I guess I did not have any one to be angry with so why not get mad at a room painted baby blue? So, when we sold that house we knew that it would most likely be torn down. The other day, it looked like this:
The next day when I drove by, all that was left was this:
It is just Jake’s room.
Now the whole house is gone, but Jake will never be forgotten. We love you Jake.
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