Preschool Pick up
January 12, 2011 at 11:48 am | Posted in Death, Grief, mourning | 5 CommentsTags: child loss, death, grief, Jake, Sawyer, twins
I stood outside the twins’ preschool and waited for them to come out. Another mother looked at me and noticed my necklace. I wear a necklace with charms for each letter of my children’s names. She asked “Do you have that many children?” Not really prepared for the question, I said nothing for a while. I then surprised myself and said “Yes, I have four children.”
As I wrote in this post, answering questions about the number of children I have is not so simple for me. But, I heard myself continue to talk. “Our first son was 14 weeks premature. He lived for 2 weeks. We never got to take him home. Then we had the twins. Last year we had a full term baby boy. He went to sleep the night of December 25th, 2009 and he did not wake up. We are still hoping to find out what happened.”
I did not stop talking when I heard the other mother try to tell me that I did not need to go on. I did not cry. The twins ran out of their school and into my arms. I packed them and myself into the car. I drove us home and thought of my other 2 children buried just a few miles away.
Not long after that day I was on my street about to go jogging. Neighbors were walking by and pushing their twins in a stroller. I had not met them before and said hello. A very ordinary exchange between neighbors took place and then there was that question again. “How many children do you have?”
I took a deep breath and repeated the explanation I gave the mother at preschool pick up. Perhaps this is my new answer.
I finished telling the neighbors about my children. I told them about Jake, the twins and Sawyer.
There are things that we don’t want to happen but have to accept, things we
don’t want to know but have to learn, and people we can’t live without but have
to let go. ~Author Unknown
Stars
December 25, 2010 at 10:45 pm | Posted in Death, Grief | 13 CommentsTags: child loss, death, grief, Sawyer
One year ago tonight was the last time I held Sawyer. At 10:45 pm we kissed him good night for the last time.
There are stars above,
so far away we only see their light
long, long after the star itself is gone.
And so it is with people that we loved
Their memories keep shining ever brightly
though their time with us is done.
But the stars that light up the darkest night,
these are the lights that guide us.
As we live our days, these are the ways we remember.
— Author unknown
I had plans to finish Sawyer’s story but I just cannot find the words right now. I will find them another day.
Sawyer’s Story (part 4): Nights
December 24, 2010 at 9:24 am | Posted in Death, Grief | 5 CommentsTags: child loss, death, grief, Sawyer, twins
Sawyer was such a good baby. He was 8 lbs. 1 oz. at birth so he could go 3 hours between feedings almost immediately. He had started to go 4 hours between feedings when he was 4 weeks old. Sawyer did get up in the middle of the night like most other newborns. Sawyer slept in a bassinet in our room. He would cry and I would get up. I would feed and change him. Evan would often help with changing Sawyer and then bring him to me to feed. Unlike with the twins, there was no other baby on deck waiting to be changed or fed. It was just Sawyer.
I know I was not always super excited getting up in the middle of the night with Sawyer. I was tired. I was cold. I had night sweats and would wake up soaking. I would quickly change before feeding Sawyer. After Sawyer died, I still had the nights sweats. I would still wake up soaking. I still thought I heard his cries but they were mine.
As I left off in this post, Evan and I were trying to figure out options that would allow us to get some more sleep. We had a night nurse with the twins. We were very lucky when the twins were born my grandfather and one set of Evan’s parents gave us the gift of having a night nurse. It did not even cross our minds to consider having a night nurse with Sawyer. After twins we felt like we could handle one newborn with no problems. And we did. Until the twins got sick and were getting up along with Sawyer.
Evan came up with the brilliant idea to call one of the night nurses who helped us with the twins. The one we called is very good and always very booked. I figured that she might have an available night in February. However, when I called she had a free night that week! She wanted to work either Christmas Eve or Christmas night.
We are Jewish and she is not. I thought it might be better if she came Christmas night. I did not want her to work Christmas Eve and then have to sleep Christmas day. She said that she was always done with her family Christmas dinner by 8 pm. We agreed she would come to our house between 10:00 pm and 10:30 pm on Christmas night. Evan and I were so excited that sleep seemed to be in our future.
Yahrzeit
December 15, 2010 at 4:44 pm | Posted in Death, Grief, mourning, traditions | 13 CommentsTags: child loss, death, grief, Sawyer
As I wrote in this post, I really appreciate most of the Jewish mourning customs. And for the most part I am on board with observing the Yahrzeit, a time of remembering the dead by reciting the Kaddish, lighting a 24-hour candle, and remembering the person who has died. The Yahrzeit falls annually on the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.
My only issue with observing Sawyer’s yahrzeit (not counting the fact that I cannot spell the word) is that according to the Jewish calendar Sawyer’s yahrzeit is tomorrow. And, like most Jewish holidays it begins at sunset the night before and lasts for 24 hours. Tonight we will light a candle and say a prayer for our sweet baby boy.
We will say kaddish, a mourner’s prayer. Anita Diamant writes in her book Saying Kaddish, that “Kaddish reminds mourners of their obligation both to dream of a world of peace and to build it — without delay.” I think this means that I should continue to repeat to myself the phrase I have already mentioned in an earlier post. “Remember the past, hope for the future but live in the present.” And thanks to my very wise and close friend I have a new quote from the movie Kung Fu Panda:
“There is a saying: yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the “present.” ”
No promises that I can do this but I will try not to dwell on how different our lives were a year ago. I will try hard not think about the secular anniversary of Sawyer’s death because it is not today. I will try to stay focused on today’s gift.
Awkward Appointments & Awesome Acting
December 4, 2010 at 4:44 pm | Posted in Death, Grief, mourning | 6 CommentsTags: child loss, death, grief, life after loss
I was cast in one of the lead roles in my 6th grade play, The Taming of the Shrew. Andrew Schulz had to kiss me on stage but that is different story. My acting career pretty much began and ended right there in 1982 in my elementary school all-purpose room. Until I became a bereaved parent. In 2005, I was cast in the role of a mother with a newborn son who died. In 2009, I was cast for the role once again.
William Shakespeare wrote, “all the world’s a stage.” This is so true in the life of a bereaved parent. I will be out to dinner or talking to someone on the phone and they will say “you are doing really great.” I will try to remember what exactly I said or did to give such a good impression. And, I think to myself what a good actress I am.
Then there are other times that I seem to forget my “I am doing really great” lines. For example, I went to the dentist the other day. I have not been to the dentist since the week before Sawyer was born. I have gone to the same dentist for over 10 years and I don’t mind going there. I knew they would ask “how is the baby?” We did not send out birth or death announcement for either Sawyer or Jake. I could have avoided the whole thing and switched dentists (I did switch hair salons for this very reason).
I chose to stay with the same dentist and play my part as the bereaved mother. However, my “I am doing great” lines had all been forgotten. I am pretty forgetful these days so I should not be surprised. Instead, I cried. I cried and explained that our perfect baby boy had died. Luckily (or unluckily depending how you look at it), during a dental cleaning there is only so much crying and talking you can do.
After crying through my dentist appointment I was happy to get out of there. As I drove away I realized this was the first time in months that I had spoken about Sawyer for so long. Now that I think about it maybe the title of this blog works both ways – it could also be awesome appointments and awkward acting.
Happy Birthday
November 17, 2010 at 7:18 am | Posted in Grief | 17 CommentsTags: child loss, death, grief
Today would have been Sawyer’s first birthday. Or, more accurately it is his first birthday but he is not here to sing to and hug. I have so many unanswered questions.
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Would he have blue or brown eyes?
-
What would he look like now?
-
Would he have been walking?
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What would have been his first word?
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Would he throw his cake on the floor like his brother? Or, would he dive right into it like his sister?
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Why did Sawyer have to leave us so soon?
I will never know. These and so many other questions will remain unanswered.
However, I do know that I will always love and miss him.
Sawyer, somehow I hope you know how much you are loved and missed.
Happy Birthday sweet baby boy.
- Sawyer
P.S. I do hope one day the results from the Mayo clinic study will help me to better understand at least medically why Sawyer died.
A Different Kind of Babysitter
August 30, 2010 at 10:50 pm | Posted in funeral, traditions | 9 CommentsTags: child loss, death, grief, mom
The doctors asked if we wanted an autopsy of Jake’s body. Our first question was if there could be anything determined from the autopsy which would further explain Jake’s death. The answer was no. Our second question was would anything from an autopsy benefit other babies or medical research. Another no. Jake had been through so much. We did not want him to go through anything else. So our answer was no autopsy. (Years later I was heartbroken to learn that parents are not always given the option to decline an autopsy for their child – but that story is for a later post. . .)
We left the hospital several hours later. Again, I did not want to leave without Jake. Realistically, I knew that he was no longer there – just his 2 lb. 14 oz. body. I was preoccupied with where he would be taken. I did not want Jake to be alone. He had never been alone. Jake was inside of me for 26 weeks. Once he was born he was surrounded by numerous doctors and nurses. Before we left we were assured that he would not be alone and that Jake’s body would be brought to the funeral home that afternoon.
At 11 am we went to the funeral home. We discussed arrangements and picked out a casket. Turns out there is only one casket Jake’s size. So once again, we did not have to make a decision – Jake made it for us. I asked and Jake’s body was not there yet.
Next we had a 1 pm appointment at the cemetery. We were shown an area called Baby Land. It is the section of the cemetery for babies and young children. It just felt wrong for us. We were taken to the other side of the cemetery on a small hill. It was so peaceful and pretty. Evan and I knew this was where we wanted Jake to be buried.
We finalized the arrangements. Again, I asked where Jake was and if I could go see him. I know this sounds morbid but I just could not bear the thought of him being alone – even if it was just his body. We were told that he was at the funeral home and we were allowed to go see him.
Matt, our contact at the funeral home, met with us again. He told us about Shomerim.
“Shomerim are watchers or guardians of the soul. Jewish tradition requires that the deceased not be left alone prior to burial. “Shomers” and “Shomeretts” therefore sit at the funeral home in close proximity to the deceased, reading psalms and assisting them in making the transition from life to death. This activity is considered holy.”
I felt myself breathe again. Kevin, the shomerim, sat with Jake and read psalms to him. Jake was not alone.
August 27th
August 27, 2010 at 9:14 am | Posted in NICU | 12 CommentsTags: child loss, death, grief
When we got to the NICU I knew that there was not going to be a miracle for Jake. The ventilator and the medications were no longer helping. Jake had made the decision for us. We did not have to be the ones to decide to take him off the ventilator. This was just one of the many gifts Jake gave to us.
Bridget, the NICU nurse, said that I could hold him. I had never held him before. I knew this would be my first and last day to hold Jake.
Holding Jake
Evan was also able to hold him.
Evan Holding Jake
At 6:14 am Jake’s heroic struggle ended. Jake gave it everything he had, and we were and still are so proud of him. Sometimes the challenges you face in life are simply too much.
The NICU nurses helped us to give him a bath and to dress him. He had never been outside and they suggested we spend some time with him on the terrace outside the NICU.
Family picture
We were very lucky to have been chosen by Jake to be his parents.
I miss Jake today and every day. Some days are just tougher.
Friday Night
August 26, 2010 at 10:14 pm | Posted in NICU | 1 CommentTags: death, grief
Jake had been having problems keeping his blood pressure up. The doctors had to increase the assistance they gave him through the ventilator and medications. The doctors had been treating a problem with his blood circulation over the past few days and they hoped that fixing that problem would help Jake. They did correct the circulation problem — however, his blood pressure continued to sink and remained unstable. He required more and more help from the ventilator to breathe. In addition, the fluid from the “hydrops” returned each time the doctors removed it. The fluid added pressure on Jake’s lungs and made it that much tougher for him to get oxygen and caused him to rely even more on the ventilator.
The doctors were at the point where they were doing everything they could for him. Our update from the doctors on Thursday was not good. During Friday’s update we were given a choice. Dr. K explained to us that it now was our decision to keep Jake on the ventilator or to take him off of it. They had done all they could do for our baby. And, we were left with a decision that no parent should ever have to make.
We decided we would wait through the weekend before making any other decisions. And, we would hope for a miracle.
We spent Friday night at the hospital with Jake. As, Evan wrote on Jake’s Caring Bridge site “It’s our Friday night date, and no one could ask for better company.”
I did not want to end our Friday night date. Bridget, the NICU nurse assigned to Jake that night, said we should go home. She also told me that I could call her any time I wanted.
We did go home and I did get into bed. I called Bridget every hour. Around 2:00 am I got dressed and asked Evan to drive me back to the hospital. He would not. I called Bridget at 3:00 am and again at 4:00 am. Bridget said it was time to come back.
I walked down the hall of our house to the room where my parent’s were sleeping. My mom had come back the Wednesday after my grandmother’s funeral. My dad had come back on Thursday. I could not see anything in the darkness and I just whispered softly to my parents that we were going back to the NICU to be with Jake.
Going Home & Grandmother
August 21, 2010 at 2:22 pm | Posted in NICU | 4 CommentsTags: death, mom
Every day Evan, my husband, would wheel me to the NICU to see Jake. I would usually be crying on the way there and on the way back. We ran into a few tours that the hospital gives to pregnant couples. I was sure that if they were not already nervous about the impending birth of their babies, seeing me and Evan crying while wheeling through the hospital was enough to terrify them.
My parents, along with both sets of Evan’s parents (his parents divorced and both remarried when he was 4) were at the hospital those first few days. They all visited Jake and sat with me in my hospital room. Jake seemed to be stabilizing and one set of Evan’s parents left. My parents were still there and staying at our house. Evan slept in the hospital room with me every night.
On Wednesday of that week I had some trouble breathing. It turned out I had fluid in my lungs – most likely from all the stuff they pumped into me before Jake was born. I had to be put on oxygen but I would be fine. My parents announced they were leaving. As I mentioned in this earlier post my grandmother had not been in good health. However, her health had been declining for several years and she always seemed to bounce back. I knew if my parents were leaving, while I was still in the hospital and Jake was in the NICU, that meant my grandmother was very ill.
My brother and I were very close to our grandmother. We always wanted to go to our grandparent’s house. Our grandparents made everything magical and fun. We would play, sing and go to the beach. Our grandmother taught us to jump waves in the ocean. She told us that if we got knocked down to get back up and to always keep one eye on the waves. Grandmother would give us chocolate pudding or yoo-hoos. What could be better?
So, my parents would not tell me anything about my grandmother’s condition – just that they were leaving to go be with her. I wanted to be with her too but I would never leave Jake (plus I was not well enough to travel).
Evan continued to wheel me in the wheelchair up to see Jake – except for the one night I had to be wheeled in a hospital bed. A nurse helped get me to the NICU that time. I was not allowed out of the bed but it was level with Jake’s isolate so, they just wheeled me next to him. We were even able to hold hands that night. Okay, I just put my finger into his tiny hand.
Holding hands with Jake
My OB told me that I was going to be released from the hospital in the next day or so. I tried everything I could think of to persuade her into letting me stay. Even though I was not Jake’s primary caregiver or spending hours and hours with him, I did not want to leave the hospital. I took comfort in the fact that Jake and I were in the same building. The thought of leaving without him was unimaginable.
All of my attempts to stay in the hospital failed. We were planning to leave the hospital on Friday night after dinner. There was no part of me that wanted to go anywhere but back to the NICU.
I was not able to eat much during those days however, the nurses still brought me meals. Dinner arrived that night and I looked at the tray. There was chocolate pudding – I know this sounds crazy even as I write it, but I felt like the pudding was some sort of sign from my grandmother. I somehow knew that the sign meant that she had died that evening.
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