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.
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:
So glad to see you September
September 2, 2013 at 10:56 pm | Posted in after death?, Grief, Jake, life after loss | 8 CommentsTags: birthday, centenarians, child loss, dark days, death, Grandfather, gratitude, Jake, new not so normal, twins
August is over and Evan came up with a brilliant plan to get through the last few days of it. The last week of August includes Jake’s deathiversary, my birthday and my grandfather’s (there are a few family wedding anniversaries in there too).
Evan planned a trip and we went away. My parents were able to join us. We usually do go away Labor Day weekend to see my grandfather for his birthday. Our whole family for many Labor Day weekends has come together to celebrate his birthday. I know that I am so lucky to have spent so many birthdays with my amazing grandfather. However, this year there was no trip to see him to look forward to, so I had to find other ways to distract myself.
Evan’s plan worked like a charm and these 2 helped as well. . .
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.
One Day at a Time
August 18, 2013 at 10:22 pm | Posted in Grief, Jake, life after loss, Love | 3 CommentsTags: baby loss, birthday, dark days, death of a baby, hope, Jake, life after loss, new not so normal, perspective, thoughts
Thank you so much for the thoughts and prayers for us and Jake on his birthday.
We are continuing to ride on the August roller coaster of happy and sad days. This weekend had a happy day. Evan‘s birthday. I remember in 2005, Jake was a few days old and I was still in the hospital. The only thing Evan got for his birthday that year was a shower. Life is no longer minute to minute like it was in 2005. However, even today if I think too much about Jake’s birth day and death day, it seems like August is so very dark.
I remind myself not to imagine the 8-year-old Jake. There is no point in grieving over the little boy who never was but somehow I can not stop myself at times. I catch my mind as it wanders to what color his eyes would have been. . .
I remind myself to take it day by day.
Jake
August 14, 2013 at 12:14 am | Posted in Grief, Jake, life lessons, Love | 13 CommentsTags: baby loss, birthday, child loss, death of a baby, Jake, life after loss, new not so normal, parenthood, premature birth, thoughts
Dear Jake,
Today you would/should have been 8. You are not. I am still so very thankful that I got to meet you. I just wish we could have kept you for longer. Below are the words that your dad wrote to you 8 years ago. They are just as true today.
We love you Jake.
You are our sunshine.
You are such a courageous and strong fighter, and we are so proud of you.
Jake, you are a miracle, and we thank you for choosing us to be your parents.
You are so wise for someone so young and so small. You knew when you had to come into this world Jake, and you knew when you had to leave us to be in a better place.
You are and were the perfect son for us.
Jake, please know that we felt all the love you gave to us during your time here.
We are sad that we could only spend such a short time with you, but we are so glad and thankful for every minute of it.
It is amazing how we could come to love you so immediately and so completely even though we were just getting to know each other.
Then again, we feel like we have known you all of our lives, and you will be in our hearts forever and beyond.
Jake, we also know that you are at peace and that you are being watched over by all of our loved ones who also watch over all of us from above.
Thank you, Jake.
Thank you for coming to us.
Thank you for choosing us.
Thank you for loving us and letting us love you with all of our hearts.
We’ll see you every night playing up with the moon and the stars.
I miss you every. single. day. Some days are harder than others. I love you.
Back to School Blur
August 8, 2013 at 9:18 pm | Posted in Jake, Love, Sawyer, twins | 9 CommentsTags: 1st grade, after death?, back to school, child loss, death of a baby, life after loss, love, new not so normal, parenthood, perspective, reality, thoughts, time
It just does not seem that long ago that I could fit both the twins in a laundry basket. How is it possible that they are now in 1st grade! ? Time is so tricky and now these 2 would never fit in a laundry basket:
It is what is supposed to happen, they should grow up. I know all too well that it is a parent’s worst nightmare when their child/children are no longer growing. As I wrote here, I am still trying not to “grow” up Jake and Sawyer in my mind. I know that there is no point of grieving over every stage and milestone that they will never reach. Some days it works better than others.
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