Humpty Dumpty & Hope
October 28, 2011 at 11:18 am | Posted in Grief, silver lining | 6 CommentsTags: child loss, hope, Jake, life after loss, new not so normal, Sawyer, Terbutaline, trisomy 21, twins, unexplainable
In 2009 on the week before Halloween I went into labor with Sawyer. Evan and I went to the ER. It turned out to be preterm labor. I was given terbutaline and sent home. I took terbutaline for the 3 weeks before I was scheduled for my c-section. Terbutaline made me feel like I had 47 cups of coffee and I wanted to jump out of my skin. It is no longer given to women for preterm labor. My mind wants to make some sort of connection between Sawyer’s death and me taking the terbutaline but I am determined to (try to) keep my no guilt promise.
When I went into preterm labor I was around 34 weeks pregnant. In my mind that was great. Jake had been born at 26 weeks and he had died. After Jake’s diagnosis and death I became a new person. Growing up I always believed in happily ever after. Everything would be ok. In 2005 my innocence was shattered. However, I somehow lived through that awful year.
The new me rationalized that if I could just make it into the 30 week range in any future pregnancies Jake’s siblings would be fine. (The new me also was silly enough to believe that becoming pregnant would not be an issue – the infertility rollercoaster instantly cured me of that delusion).
The twins were born at 35 weeks. Sawyer was born at 37 1/2 weeks. Sawyer was 8 lbs at birth. Jake was 2 lbs. My new self thought that once Sawyer was home we were in the clear. Six short weeks after Sawyer came home my “new” world was once again devastated. I am still piecing myself back together. I might be working on this for the rest of my life. Maybe I will be like Humpty Dumpty and “all the king’s horses and all the king’s men” won’t be able to put me back together again.
However, I have my own little people with horses and they are excellent with glue.
No Bones About It
October 24, 2011 at 10:22 pm | Posted in Grief | 7 CommentsTags: child loss, grief, life after loss, parenthood
I like Halloween decorations just as much as most people. Although, in college I did ask my freshman year roommate to raise the bats she had hung from our dorm room ceiling. I did this not because I am anti Halloween but because I am about 6 inches taller than her and I hit my head on them every time I crossed the room. I did feel pretty bad when she got upset that I had asked to raise up the bats and took down all the decorations – but that is a different story.
I really only like happy Halloween decorations. Pumpkins are great. Ghosts I am good with. I can even deal with the headstones in the lawn. I am just not so good with bones.
I cannot quite put into words why it bothers me. I know it has to do with Jake and Sawyer. It is all good for other houses but I have made a no bones rule in my house. So far no one has challenged the rule.
A Band & A Baby
October 18, 2011 at 8:10 pm | Posted in Death, Grief, mourning, silver lining | 3 CommentsTags: child loss, motherhood, tragedy, twins
I joined a band. Not the musical kind of band but a different kind. The mission of Band Back Together is below or click on the link to read more about it:
Our Mission
Band Back Together is a group weblog that provides educational resources as well as a safe, moderated, supportive environment to share stories of survival. Through the power of real stories written by real people, we can work together to destigmatize mental illness, abuse, rape, baby loss and other traumas so that we may learn, grow, and heal.
All are welcome.
Not sure what I am doing in the band but I will figure it out. . . .
I also wanted to welcome my new nephew, Ethan, to the world! I cannot wait to meet him. And introduce him to his big cousins.
Spam, Signed & Sealed
October 8, 2011 at 9:18 pm | Posted in Death, Grief, traditions, twins | 8 CommentsTags: child loss, Jake, Jewish customs, life after loss, Sawyer, unexplainable
If I have ever emailed you since the late 90’s you may have recently received suspicious emails from my address. Let me apologize for any emails offering secrets of happiness or descriptions of sexual adventures. I promise if I knew the secrets to happiness I would let you all know immediately. Not sure what to write about the sexual adventures but please don’t open the link. However, it appears my email account (which I have had for almost 15 years) was hacked. I have changed my password. Hopefully, I will soon be spam free which coincides perfectly with my clean slate from the High Holidays.
The days between Rosh Hashanah, the Jewish New Year, and Yom Kippur are known at the Days of Awe. These days are for introspection and reflection on the sins from the past year. Names are written into the book of life. On Yom Kippur, the books is sealed. In the High Holidays since Jake and Sawyer have died, I have thought about the fact that they did not have any sins. So why were their names not inscribed in the book of life? I know there is no answer to this question but I had to write it anyway. I will not go down the path my mind usually takes. This is the path of guilt where I have thoughts about my sins being the reason that Jake and Sawyer were not written into the book of life. Must remember that my guilt is in the river.
WE REMEMBER THEM.
At the rising of the sun and at its going down
We remember them.
At the blowing of the wind and in the chill of winter
We remember them.
At the opening of the buds and in the rebirth of spring
We remember them.
At the blueness of the skies and in the warmth of summer
We remember them.
At the rustling of the leaves and in the beauty of autumn
We remember them.
At the beginning of the year and when it ends
We remember them.
As long as we live, they too will live, for they are now a part of us as
We remember them.
When we are weary and in need of strength
We remember them.
When we are lost and sick at heart
We remember them.
When we have joy we crave to share
We remember them.
When we have decisions that are difficult to make
We remember them.
When we have achievements that are based on theirs
We remember them.
As long as we live, they too will live, for they are now a part of us as
We remember them.
By Sylvan Kamens and Rabbi Jack Reimer
Go Guilt Go
October 4, 2011 at 11:40 pm | Posted in Grief, traditions | 9 CommentsTags: child loss, Jake, Jewish customs, life after loss, Sawyer, twins
This week I went with the twins on a school field trip. We went to a park alongside a river. The purpose of the trip was to say the Tashlich prayer. Tashlich means to cast off. It is a Jewish tradition of “casting off” your sins and starting the new year with a clean slate. Rosh Hashanah, the Jewish New Year was this past week (just in case you did not already know that). I really like the idea of having a clean slate.
The way that the twins’ teachers explained Tashlich to the children was that it is putting all of your bad feelings into the river. Examples they gave were fighting with your brother/sister and not listening to your parents.
There were lots of feelings that I tried to “cast off” into the river. The top of my list was my guilt. My guilt that I did not do everything I could to protect Jake and Sawyer. I know logically that there was nothing I could do but as their mother I should have been able to protect them. I have replayed (in my mind and in talking to friends and therapists) Jake and Sawyer’s short lives over and over. I have tried to imagine if there could have been something I did or did not do that would have changed the fact that they both died.
I tried to leave my guilt in that river by the park. I will let you know how that works out for me. . .
October
October 2, 2011 at 11:58 pm | Posted in Grief | 10 CommentsTags: child loss, gratitude, grief, hope, parenthood, SIDS, SUIDS, unexplainable
Along with being Breast Cancer Awareness month, October is also Pregnancy and Infant Loss Month. Did you know that 2,000 women/men lose their babies in 1 day (and that is in the United States alone)?
Myths vs. the truth about pregnancy/infant loss:
Myth: Losing a baby is very uncommon; it won’t happen to me or someone I know.
Truth:
- 25-50% of all pregnancies end in miscarriage (pregnancy.org).
- Stillbirths (the death of a baby after 20 weeks gestation) occur in one in every 160 pregnancies–about 60 stillborn babies every single day (March of Dimes).
- Each year, in the US alone, about 20,000 babies die in their first month of life, many after being born prematurely (March of Dimes).
- SIDS is the leading cause of death among infants ages 1 month to 1 year.
Myth: Pregnancy/infant loss is something that happens to older moms, overweight moms, or moms with health issues.
Truth: “Baby loss” does not discriminate. Often, it’s young, perfectly healthy women who experience the loss of a baby. The Faces of Loss are of ALL kinds of women–young, old, black, white, thin, obese–pregnancy/infant loss can strike anyone.
Myth: Miscarriages and Stillbirths are usually caused by a lack of prenatal care or something else the mother did during her pregnancy.
Truth:
- Almost 100% of miscarriages could not have been prevented, with the majority being caused by chromosomal abnormalities.
- 25% of Stillbirths are caused by placental problems; 15% are caused by an infection; 2-4% are caused by umbilical cord problems, and 50% have no known cause of death whatsoever. While there are risk factors to be aware of (smoking, for instance), the overwhelming majority of stillbirths are completely out of the mother’s control.
Myth: A woman who has just lost a baby wants to forget it ever happened and move on with her life.
Truth: While this may be true for some, many are dying to talk about the child they lost, especially if it was a late-term pregnancy loss or infant loss. The chance to talk freely about their baby(ies), without feeling like they are making everyone uncomfortable, is something many, many women who have lost a baby wish for.
The information above is from I am the Face. Faces of Loss, Faces of Hope tries to put real stories and faces with all of these statistics.
Hats & Hope?
September 20, 2011 at 11:38 pm | Posted in Grief | 11 CommentsTags: cancer, CHD, child loss, gratitude, hope, Jake, life after loss, parenthood, SUIDS, unexplainable
I had been hoping for an answer to why Sawyer died. And while I was hoping, I wanted an answer to why Jake died. There is no answer today. There might not be an answer tomorrow. Or ever. I was hoping that I could fight against whatever caused the deaths of our babies. I could raise awareness. Help other families. Now I do not know what I am fighting against.
Perhaps in the case of Jake it is prematurity and hydrops that I need to fight. Maybe Sawyer will officially be another SIUDS statistic and I can try to figure out what that means. It seems hard to fight against the unknnown.
I have readjusted what I hope for in the past. It is once again time for me to change my hopes. I have to stop hoping for an answer.
I will continue to be so thankful for everything I do have.
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- So Happy in Her Hat
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- Paper Bag Hat
I will continue to be inspired by parents who have turned their grief into action:
The Ronan Thompson Foundation
Layla Grace Foundation
Friends of Maddie
Hailey’s Hope Foundation
Simon’s Fund
Cora’s Hopes and Dreams
I hope to have the strength one day to also turn my grief into action. Writing and speaking about Jake and Sawyer is a step in the right direction. I just have to figure out what is next. Any suggestions?
NICU Nurses
September 16, 2011 at 11:48 pm | Posted in Grief, hospital, mourning, NICU, parents | 6 CommentsTags: bereavement training, child loss, life after loss, parenthood
This week I, along with 3 other mothers, spoke to group of NICU nurses. The nurses have bereavement training. The purpose of parents speaking is so that we can give feedback about our experiences at the hospital. I listened to the other women recount their bittersweet experiences. I spoke about mine. This is the second time I have spoken to a group of NICU nurses. I am very thankful that this group of people are able to be NICU nurses. I never could do it. I am so amazed by their skill and compassion.
The other women who spoke turned their grief into action. One of the women and her husband started a grief group at their church. Another women writes a blog. The third woman started a group called Rock Goodbye Angel. The purpose of the group is to “encourage families who have lost a baby to regain hope by caring for them during their time of grief so that they know they are not alone.”
I think that the 4 of us gave the nurses some helpful feedback. A few suggestions came out of the discussion:
- Hospital staff (nurses, chaplains, etc.) perhaps do not need to bring up topics such as funeral arrangements and autopsies while the baby is still alive. Parents of babies in the NICU are trying to focus on hope and survival.
- Inform everyone in the hospital when there has been a death so before they come into your hospital room they already know. This way when the person who comes to empty the trash they will not ask how the baby is doing. Our hospital puts a dove outside the door to indicate tha the baby has died.
- It would be great if there were separate entrances and exits for parents whose baby has died. Waiting in the wheelchair after being discharged from the hospital all the mothers are in the same area. It was excruciating leaving Jake in the hospital and waiting with happy new parents and their babies did not help. On the flip side, when I left the hospital with the twins, I was waiting in the wheelchair for Evan to pick us up. I was sitting next to a mother with empty arms. I knew what that meant and my heart broke for her.
- Continuing bereavement training is helpful for caregivers, friends and family.
“Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not
grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured. These tears lead directly to introspection.” Leon Wieseltier, The New Republic’s literary editor. (sent to me by my sister-in-law Melanie – thank you!).
Anniversaries (again)
September 10, 2011 at 3:44 pm | Posted in Death, father, Grief, mother, mourning, parents | 4 CommentsTags: child loss, death, fathers, grandparents, grief, life after loss, mom, siblings, 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.
A Person is a Person
August 24, 2011 at 10:50 am | Posted in Grief, silver lining, twins | 9 CommentsTags: child loss, gratitude, Jake, Jewish customs, life after loss, parenthood
“A person is a person, no matter how small.”
– – Dr. Seuss
Jake weighed into this world at 2 lbs. and 14 ozs. Not a big guy but a fighter. According to the secular calendar, nearly 6 years ago 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.
According to the Jewish calendar, the anniversary of Jake’s death was 2 days ago. 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. Evan and I lit a Yahrzeit candle. We said the mourner’s kaddish. After all the times I have said this prayer I still cannot seem to memorize it. Perhaps it is because I am usually crying. Perhaps it is a mental block. Whatever. We thought about Jake.
I will light another candle for Jake in a few days. I have my own tradition of lighting Yahrzeit candles on both the Jewish and secular anniversaries. I will just call it the mourning mom’s calendar.
Luckily, the Cat in the Hat and Fancy Nancy were visiting the Princess and the Cowboy this weekend and kept everyone busy.
Note: The Power Ranger costume was in the wash so the cowboy costume filled in for the moment. . .
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