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.
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.
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.
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.
The King & Queen of July’s Birthday (with a side of bittersweet)
July 30, 2013 at 10:08 pm | Posted in Grief, Jake, normal?, twins | 4 CommentsTags: baby loss, bittersweet, child loss, death of a baby, gratitude, happy birthday, Jewish customs, King and Queen of July, life after loss, new not so normal, parenthood, perspective, twins, yahrzeit
A few years ago (not long after they learned to speak) the twins announced that they are the King and Queen of July. It is after all, their birthday month and we (me and Evan) should never forget to plan accordingly. The twins did have a fun birthday. I can not say that they were overjoyed the whole month. I distinctly remember being told I was “making it the worst July ever” on a few occasions after I asked them to clean up their toys, brush their teeth or take a bath. . .
I am forever grateful for our amazing twins. I am so lucky that I am their mom and getting the chance to raise them. Happy, happy birthday to the King and Queen of July!
The bittersweet part of the twins’ birthday was that this year Jake’s yahrzeit fell on the same day. A Yahrzeit is the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar. We lit a Yahrzeit candle. We said the mourner’s kaddish. I tried my best not to think about the almost 8-year-old big brother who should have been running around the birthday party. I am so very lucky to be Jake’s mom too.
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