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.
Shifting
October 22, 2013 at 8:46 am | Posted in Grief | 4 CommentsTags: baby loss, child loss, Jake, life after loss, new not so normal, perspective, Sawyer, thoughts
Awhile back I mentioned that Jake and Sawyer’s nameplates, which are part of the headstones, have shifted. The bolts had become loose and then inexplicably disappeared but they were repaired. However, the cemetery grounds people explained that because these are not the original bolts they might not hold. I have been watching them shift again over the last few weeks. I really still cannot understand how it is possible so I brought Evan to confirm.
He took one look and verified that yes, the nameplates (mostly Jake’s) have shifted again. He did offer up the explanation that perhaps Jake and Sawyer are just like any other children giving their parents something to worry about. I sort of like this idea. It goes along with the theory that my very sweet cousin pointed out Jake and Sawyer are just being boys playing together and being mischievous. They could just be playing Halloween tricks.
We are going to call the cemetery to have the process started to replace the nameplates. This is still odd and not okay but we can get it fixed. I have to keep it in perspective. Jake and Sawyer are not in danger. Nothing can harm them anymore. This we can do something about.
Of course, all of this reminds me there are so many hard and heartbreaking events in life that we cannot control. Illness, accidents, disasters, bad things happening to good people. These things all happen, and seem to happen far too often. They will continue to happen too (though I feel like we have had more than our fair share lately). But a break would be nice. And fixing things that we can control helps, at least a little.
Fun Friday
October 18, 2013 at 12:08 am | Posted in life after loss, Love | 8 CommentsTags: hope, hugs, life after loss, new not so normal, perspective, thoughts, What does the fox say?
I have always wondered what it would be like to write something light-hearted. The twins have Fun Friday at school so I was thinking I should give it a try too. Here are two things that made me smile this week.
1. The Facebook page Amazing Things in the World posted this picture a few days ago:
Did you know that koalas sleep cuddled with their young to protect them at all times? I think it sounds like a perfect idea which would resolve many of my paranoid parenting tendencies. The twins would so not think it was perfect and they would most likely make a similar expression as the one on the baby koala’s face. Snuggling in a stationary position would not work for them because they prefer to toss and turn while asleep. Perhaps in my next life I can be a koala.
2. Have you seen the video “What does the Fox Say?” It is super funny. The brothers Vegard and Bård Ylvisåker, members of a Norwegian comedy group produced the song and music video “The Fox.” They created it to promote the upcoming season of their television talk show, Tonight with Ylvis. Disclaimer: If you watch this video, the song could get stuck in your head for days.
Just wanted to share the smiles with you all. Hope that you have a good weekend.
Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
October 14, 2013 at 10:26 pm | Posted in life lessons, Love | 5 CommentsTags: book review, child loss, grief, hope, life after loss, new not so normal, thoughts, Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
The book, Tiny Beautiful Things: Advice on Love and Life, is a compilation of advice columns by Dear Sugar. It is written by Cheryl Strayed, who was formerly the anonymous online advice columnist, Dear Sugar. The book is a collection of letters written to Dear Sugar and her responses. Dear Sugar writes advice to questions about love, life, death and everything in between.
I previously wrote about one of Dear Sugar’s advice columns to Stuck. Stuck is a bereaved mother. Stuck’s baby died. Sugar offers some very powerful advice on how to get unstuck. In another post, in response to a letter from Living Dead Dad, Sugar wisely writes:
“I don’t know how you go on without your son, sweet pea. I only know that you do. And you have. And you will.”
“Your boy is dead, but he will continue to live within you. Your love and grief will be unending, but it will also shift in shape. There are things about your son’s life and your own that you can’t understand now. There are things you will understand in one year, and in ten years, and twenty.”
There was a time after Jake and then after Sawyer’s death that I could not concentrate long enough to finish a sentence let alone an entire book. Now, I am able to concentrate while I read, although I have to admit most of my “reading” is actually listening to books on CD in the car. I am so glad that I stumbled back upon the book Tiny Beautiful Things and listened to it in its’ entirety.
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.
Control & Clean Clothes
September 26, 2013 at 9:53 am | Posted in life lessons, Love, normal?, venting | 6 CommentsTags: child loss, dark days, Jake, life after loss, new not so normal, perspective, Sawyer, thoughts
I wish life could be a bit more like laundry. You put the dirty clothes in the washing machine, add detergent and wait. After the clothes are clean put them into the dryer. Wait. Fold.
Okay, it is not always so seamless. I have turned a few white loads pink. I will also confess that I have washed more than one diaper. It is pretty messy. However, after shaking out the clothes and repeating the wash and dry cycles everything was once again clean.
Before 2005 there were plenty of situations out of my control but Jake’s diagnosis put them all into perspective for me. I did what I thought were the right steps. I gave birth to Jake at 26 weeks anyway. He lived for 2 weeks but I could not do a thing to prevent his death.
At the time I thought that I could protect any potential future children if they were not premature. I could be in control if I could just keep them out of the NICU. Sawyer’s death let me know loud and clear that I was wrong about that too.
Lately, life seems more out of control than I would like. I just need to realize that is all part of life and hold on.
I think I will go switch the laundry into the dryer.
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.
9/11, The End of the World as We Know it: Anniversaries (repost again)
September 10, 2013 at 5:46 pm | Posted in Grief, life after loss | 2 CommentsTags: 9/11, anniversaries, dark days, hope, life after loss, new not so normal, perspective, thoughts, tragedy, unexplainable
The tragedy of 9/11 and its’ anniversary are kinds of grief. It is of course, an enormous source of grief for all of the families and friends who lost loved ones. It is also the kind of grief in which you realize that the world as you knew it will not ever be the same.
Hurricane Katrina hit New Orleans the week that Jake passed away. A very close friend of mine took her 5-year-old son in for his check up and the pediatrician found a rare heart condition. My grandmother had died. I felt like the world was coming to an end. So, I asked the rabbi who presided at Jake’s funeral about the possibility that the world was ending. He replied with an analogy. He said that it is like when you decide you are going to buy a certain kind of car. Once you make the decision you start seeing the car every where. So, my take away from his explanation was now that I was grieving I would start to see grieving every where. . . Turns out you don’t have to look too far for grief in this world. The record 7.0-magnitude earthquake hit Haiti shortly after Sawyer died.
I know that 9/11, where close to 3,000 people died; Hurricane Katrina, where 1,500-1,700 people died; and the earthquake in Haiti, where almost 230,000 people died are tremendous losses compared to the death of two babies. But, those babies were mine. And, my world will never be the same as it was before they had died.
There is not a contest for who has the most grief. I am not trying to compare my losses to these catastrophic tragedies. There are not any winners here. In grief we have all lost. However, there is still the next day and the day after that. And one day, there is a point where we will realize that our loved ones are dead but we are still alive.
I posted the above last year at this time. On the anniversary of 9/11 and every day, my heart, prayers and thoughts go out to not only the victims but to those who they left behind in this world.
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