Happily Ever After and Hope
June 2, 2011 at 11:11 pm | Posted in Death, Grief, silver lining, twins | 5 CommentsTags: gratitude, grief, hope, twins
Thank you so much for all the extremely kind and wise comments on my last post. I did not mean to sound more out of sorts than usual. Nothing significant has changed. Jake has still been dead for 5 years and 9 months. Sawyer has still been dead for 18 months. I have many good things in my life – for which I am very grateful and happy. I just always believed my life would have a “happily ever after” ending which did not include burying 2 children.
Now I need to adjust my expectations. I have done this before and I am sure that I will again. For now I am going to try to be like Jimmy Buffett and “. . . live happily ever after, every now and then.”
Hand-me-downs and Hope
May 30, 2011 at 10:22 pm | Posted in Grief, mourning, silver lining, twins | 7 CommentsTags: child loss, gratitude, hope, Jake, Sawyer, twins
We are extremely fortunate that the twins are the recipients of hand-me-downs from our niece, nephew and a few close friends. As the twins outgrow the clothes I put them into buckets marked with the sizes. I then bring the buckets to our basement. For a few years the clothes sat down in our basement with the hopes that we would have a younger sibling for the twins.
After we had Sawyer and he was safely home from the hospital I went down to the basement. I brought up all the boy clothes from 0 to 12 months. I washed them and put them away in his room. In the almost 6 weeks that he was alive Sawyer wore some of the very kind gifts given to him when he was born and hand-me-downs.
Within the first few days after he died I went into his room and started to put away the clothes. A few family members were with me. One suggested that we send all the clothes to my brother and sister-in-law who were expecting a boy in a few months. It sounded like a good idea to me. However, Evan who usually stays out of the crazy clothes storing business strongly disagreed. He was not ready for the clothes to leave our house. The clothes went back to the basement.
Awhile later I spoke to Evan and we agreed to send some of the clothes to our new nephew. And now every few months I go down to the basement and pack up clothes to send. Evan helps me at times and just like so many things in our lives it is bittersweet. I am sad when I look at the clothes Sawyer will never wear. I am happy that they are being worn by our nephew. And, I hope that the clothes will continue to be passed along – I just wish they stayed at our house a little longer.
Note: I know that I keep reusing the word Hope in the titles of my posts. I think if I keep writing it maybe I will have more of it. I cannot figure out why but I am struggling these days. It is not Jake or Sawyer’s birthdays or anniversaries of their deaths. In fact, I was just telling myself that this time of year is so much easier than the time of year (from August on) filled with birthdays, anniversaries and holidays.
It could be that the twins just finished another year of preschool. They are growing up so quickly and their brothers are not. Or, maybe when I looked at our wedding pictures on our anniversary I saw the me before burying 2 children. The me who did not have trouble sleeping, the me who was not drawn to the plot in the cemetery, the me who was so hopeful for the family that Evan and I were beginning. Whatever, the reason I will continue to try to hope and if all else fails I will just act hopeful.
Hope, Hair and Happiness
May 28, 2011 at 11:41 am | Posted in Grief, mother, silver lining | 7 CommentsTags: cancer, gratitude, grief, hope, mom, motherhood
After Jake died I did not brush my hair. I did not change my clothes. I did not shower. I am not sure how many days I went on like this but it was quite a few. Finally, some friends strongly encouraged me to make a hair cut appointment. I am pretty sure someone ended up making the appointment for me. And, driving me to the salon. I remember feeling better after the appointment. Thank you to my friends who had the good sense to have a hygiene and hair intervention.
Throughout my life I try to volunteer. The week after Jake died Hurricane Katrina hit New Orleans. After Sawyer died the earthquake devastated Haiti. I wish I had the emotional and physical energy to donate my time to both of these causes. However, when I have not had the energy or the time I have donated my hair. Especially after talking to my mother-in-law about losing her hair I realized how important it is to have the option to wear a wig.
This week I donated my hair for the 3rd time to Pantene’s Beautiful Lengths. Here is my crazy long hair before:
I donated 9 inches of hair:
Here is my hair after:
It takes 6 donations to make one wig. So I have officially donated 1/2 a wig.
A Birthday, A Wedding and 2 Funerals
May 24, 2011 at 9:52 am | Posted in Grief, silver lining | 9 CommentsTags: child loss, gratitude, grief, life after loss
Today is my brother’s birthday. We are 2 years and 2 months apart. I have been told over the years that he was very excited when my parents brought me home for about 2 weeks – at which point he asked if they could return me. He spoke at Jake’s funeral when Evan and I could not. He has called me almost every day since Sawyer died. He has talked me through times that I know I could not have gotten through without him.
I look at myself in this picture of us when we were 2 and 4. If I could, would I warn myself about the path that my life would take? Would I tell myself to make different decisions? I know that life has not turned out the way that I had imagined it would when I was a child.
My brother was gracious enough to share his birthday with Evan and I. The place that we wanted to get married only had 1 date before one of Evan’s brothers left for the Peace Corps in Armenia (but that is a different story).
Eight years ago today we were married. Is it really possible that in 8 years we have had 4 children? We have had 2 funerals. One for our oldest son and one for our youngest.
If I could go back to talk to myself on my wedding day would I warn myself about the heart-break in my future? Would I tell myself that I would bury not 1 but 2 of our children? I honestly do not know the answer to these questions.
One of my favorite English teachers made us memorize the Robert Frost’s poem The Road Not Taken:
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I–
I took the one less traveled by,
And that has made all the difference.
I am fortunate enough that the roads I have taken (while they may have not been the easiest) I have had Evan and my brother by my side.
SUIDS, SIDS & Sawyer
May 20, 2011 at 8:59 am | Posted in CHD, Grief | 8 CommentsTags: grief, Sawyer, SIDS, SUIDS
Before January of 2010 I was blissfully unaware that the term SUIDS (Sudden Unexplained Infant Death Syndrome) even existed. I had heard of SIDS but my experience with it was limited to watching stories about fictional families in Lifetime movies or reading about real, unknown families in newspaper articles.
Until December of 2006, SIDS did not exist in my real world. Our next door neighbor called to let us know that another neighbor’s baby had died. It was determined the cause of death was SIDS. Evan and I went to talk to the parents. Their 2 toddler boys were running around in circles as we shared Jake’s story and they told us about their baby.
Our neighbor’s baby was full term. She was 3 months old. She had been to the pediatrician the day before. She had been taking a nap. She did not wake up. I did not know that Jake would die. However, I knew he was very premature and he had hydrops. I knew that he was in the NICU and there were complications. Our neighbor thought she was waking up her baby to take her to her first Christmas party.
December of 2009, Sawyer did not wake up.
It was determined that Sawyer’s cause of death was not SIDS because of the coarctation of his aorta. In order for SIDS to be determined the cause of death the baby must be 100% anatomically correct. The coarctation while it was not narrow enough to cause death, it did lead to the possibility that he had cardiac channelopathies.
I know that I am not the best at explaining these medical terms. The following is a better explanation from the CDC:
Sudden unexpected infant deaths are defined as deaths in infants less than 1 year of age that occur suddenly and unexpectedly, and whose and cause of death are not immediately obvious prior to investigation.
Each year in the United States, more than 4,500 infants die suddenly of no immediately, obvious cause. Half of these Sudden Unexpected Infant Deaths (SUID) are due to Sudden Infant Death Syndrome (SIDS), the leading cause of SUID and of all deaths among infants aged 1–12 months.
Sudden Infant Death Syndrome (SIDS)
Sudden Infant Death Syndrome (SIDS) is defined as the sudden death of an infant less than 1 year of age that cannot be explained after a thorough investigation is conducted, including a complete autopsy, examination of the death scene, and review of the clinical history.
SIDS is the leading cause of death among infants aged 1–12 months, and is the third leading cause overall of infant mortality in the United States
Hope & Heart Ache
May 16, 2011 at 11:36 pm | Posted in CHD, Grief, parents, silver lining, transient tachypnea | 5 CommentsTags: CHD, child loss, hope, Jake, life after loss, newborn, Sawyer
We still do not know the cause of Sawyer’s death. His heart just stopped. He is currently in a study at the Mayo Clinic for Long QT. His autopsy did not determine that it was SIDS. No matter what the results of the study conclude I know that Sawyer will still be dead. However, I hope that his death will help to provide the research which could prevent other children from dying.
According to the Children’s Heart Foundation, “Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one-third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.”
CHD’s can be detected by Echocardiogram, Cardiac catheterization, Chest X-Ray, Electrocardiogram (ECG/EKG), Magnetic Resonance Imaging (MRI) or other diagnostic testing. Newborns do not routinely have any of these exams. Some CHDs can be detected pre-birth by a Level II ultrasound or by a fetal echocardiogram.
Sawyer had a Level II ultrasound and a fetal echocardiogram. All appeared to be perfectly normal. He was also in the NICU briefly because of transient tachypnea (extra fluid in the baby’s lungs which would normally be squeezed out when the baby goes through the birth canal – c-section babies do not have the benefit of the fluid being squeezed out. )
In the NICU Sawyer’s heart and pulse oxygen levels were monitored. Again, all appeared normal. He did not have an EKG or an Echocardiogram. If he had, would anything have been detected? We will never know.
What I do know is that I wish there was more screening for newborns. I hope that organizations like Simon’s Fund succeed in their mission “To save a child’s life . . . . and then another, by raising awareness about heart conditions that lead to sudden cardiac arrest and death.”
I hope that Cora’s Story results in a pulse oximetry test on every baby. I want to help Aaron’s mom, Cora’s mom, Logan’s mom and all the other parents of CHD children to spread awareness and hope. Sawyer’s death may not have been caused by a CHD but it did make me realize how many children do die because of heart defects. Please ask your child or grandchild’s pediatrician if they provide heart screening.
“In the sharing of our losses, our hearts grow stronger.” Kirsti A. Dyer, MD, MS
Sawyer’s Story (part 16): Becoming a Stalker
May 10, 2011 at 11:08 am | Posted in Death, Grief | 3 CommentsTags: child loss, death, grief, Sawyer
We had missed the first call from the medical examiner. She had left a message. I called back. I had missed her for the day. I called again the next day. And the next. The Tuesday after Sawyer died I spoke to one of the two pathologists who had performed Sawyer’s autopsy. I spoke to Dr. R. She told me the preliminary findings and explained that it would be a few weeks before all the test results were back.
Dr. R. proceeded to tell me that Sawyer had a coarctation of his aorta. She explained that this is a narrowing of the aorta. She gave me the measurements. I asked frantically if there was some way that we could have detected this. Did we miss a symptom or a sign? Could we have prevented it? If it was a heart defect than that would mean that it was not a virus or something else that I could have let Sawyer be exposed to.
After hanging up the phone with Dr. R. Evan called our pediatrician. He told him the preliminary results. Our pediatrician explained to us that the measurements of the narrowing in Sawyer’s aorta were small but Sawyer and his heart were small. I was now wishing that I could understand more of these medical terms. More than once when Jake was in the NICU I cursed myself for going to law school instead of medical school
I tried to call Dr. R. back. She was not in her office. I left a message. She did not call back the next day so, I called again. And again. I contemplated how many times a day I could call her. I decided to keep calling but just leave messages once a day. Two painfully long weeks went by. I began to think about going to the medical examiner’s office in person.
I asked the receptionist what she thought would be good times to call. I called at the times she suggested. I called at other times. I jumped every time our phone rang hoping it would be her.
“Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death. We misconstrue the nature of even those few days or weeks. We might expect if the death is sudden to feel shock. We do not expect this shock to be obliterative, dislocating to both body and mind. . .” — Joan Didion (The Year of Magical Thinking)
Mixed Up Mother’s Day
May 8, 2011 at 10:20 pm | Posted in Death, Grief, mother, traditions, twins | 7 CommentsTags: child loss, Jake, mom, motherhood, Sawyer, twins
The definition of a mother is “a woman who has, conceives, gives birth to, or raises a child.”
I am so lucky that I woke up this morning to our two happy twins saying “Happy Mother’s Day!” to me. I am also so fortunate and grateful that I was able to call my mother to wish her a happy Mother’s Day. I know that there are people whose mothers, grandmothers and/or children have died. I know that this day can be challenging on many levels.
As I have written about before, I often silently tell myself to “remember the past, hope for the future but live in the present.” No matter how many times I repeat this saying I cannot help but to think about past Mother’s Days. . .
Mother’s Day 2005 – I was pregnant with Jake. We spent the day with my mom and my grandmother. My brother, sister-in-law and our 10 month old nephew had the whole family over to their house. We had not been for the nuchal screening test yet. I was blissfully ignorant and happy.
Mother’s Day 2006 – I was in a no (wo)man’s land of mothers. I was a mother with no child to care for and raise. Jake had been dead for less than a year. Evan and I went to the cemetery. We planned Jake’s unveiling and hoped for the possibility that Jake would one day have a brother or a sister.
Mother’s Day 2007 – I was pregnant with the twins. I still felt like I was living in a no (wo)man’s land of motherhood. Jake had been gone for nearly 2 years. We went to the cemetery. We had gone for an OB appointment the Friday before Mother’s Day. Our OB, who was one of the few people who met Jake, said to me at the end of the appointment that I should be really happy because I was now going to have my first official Mother’s Day. I still remember how those words cut through me like a knife.
Mother’s Day 2008 – The twins were 10 months old. According to anyone’s definition I was now a mother. Jake had been dead for almost 3 years. I was happily exhausted. We visited Jake at the cemetery and spent the day with the twins.
Mother’s Day 2009 – I was pregnant with Sawyer. The twins would be 2 at the end of July. Jake would have been 4 that August. We visited Jake at the cemetery and spent the day with the twins.
Mother’s Day 2010 – Sawyer had been dead 4 1/2 months. The twins were almost 3. Jake would have been 5. We visited Jake and Sawyer at the cemetery. I cried most of the day and tried to play with the twins.
Today we went to the cemetery. One of the twins left a toy for her brothers. She said she was leaving the toy to make Jake and Sawyer happy. As I sit here and write I think she makes me happy. So do all three of her brothers.
Small Steps
May 5, 2011 at 10:35 pm | Posted in Grief, silver lining | 4 CommentsTags: child loss, gratitude, hope, Jake, Sawyer
As I wrote about in this post I have great admiration for bereaved parents who continue the legacy of their children. We have not yet started non-profit or a run. However, we did participate in the March of Dimes walk last weekend. We have walked almost every year since Jake died. Our team had been called Jake’s Journey. This year our team’s new name is Jake’s Journey and Sawyer’s Strides.
Thank you to all those who supported our team this year and in past years. We appreciate your kindness and generosity. I do believe that the March of Dimes is making a difference and saving babies.
The walk we did started at the Mattie J.T. Stepanek park. At the age of three, Mattie started to write poetry to cope with the death of his older brother. Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy. Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.
Mattie’s mother, Jeni, spoke before the walk. I was able to meet her afterwards. Her strength and courage is remarkable. She continues to spread Mattie’s message of peace and hope. I am going to do my best to share and honor Jake’s and Sawyer’s lives.
Facing the Future
Every journey begins
With but a small step
And every day is a chance
For a new small step
In the right direction
Just follow your Heartsong
by Mattie J.T. Stepanek
The Unveiling
April 26, 2011 at 6:40 am | Posted in Death, Grief, traditions | 5 CommentsTags: grief, Jake, Jewish customs, Sawyer
Since ancient times, it has been the Jewish custom to mark the grave with a stone. After Rachel died, “Jacob erected a monument on Rachel’s grave” (Genesis 35:20). The marker/monument serves to identify the grave so relatives will find it when they visit, honor the memory of the deceased, and identify a place of burial.
It is also the Jewish custom not to place a headstone at the time of burial. Instead an unveiling is the formal dedication of the headstone. The unveiling usually takes place 12 months after the funeral as a way to mark the end of the formal mourning period. However, the unveiling may take place any time after the first 30 days after the funeral.
June, 2006. We had an unveiling for Jake 10 months after the funeral. We made this decision in part because the Rabbi who presided at Jake’s funeral was moving back to California. Evan and I both wanted the same Rabbi to preside over Jake’s unveiling. So, Evan agonized over what to write on the headstone before ordering it. He picked out the font and the border. I was numb. My mind did not seem to have the ability to think of anything to write on Jake’s headstone. Evan did it all and then showed it to me. We finalized it and placed the order.
We knew the headstone would come in a week or 2 before the ceremony was scheduled to take place. I thought for some reason we would get a call to let us know it had arrived. There was not a call. I was still going almost every day to the cemetery. Evan went with me sometimes and other times I went alone. One day, we walked up the hill to Jake’s grave and there it was – his headstone. It was covered with a sheer cloth. The pit in my stomach which had been there for the past 9 months grew bigger. We read the headstone over and over. The dates were wrong. The font was wrong.
Evan called the cemetery’s office and explained the mistakes. They assured us that it would be corrected immediately.
Our families arrived in town for the ceremony. The day before the unveiling Evan and his mom went to the cemetery. The sheer cloth was over the headstone. They read it carefully – JACK. Evan was beyond furious. He and his mom went to the office. The original wrong headstone was still there. It at least had the right name so it was put back in for Jake’s unveiling.
I do not remember much about the ceremony. I remember it was hot. Our family and close friends were there. Our 1-year-old niece and nephew were also with us and waddling around the cemetery.
Today, 2011. It is 16 months since Sawyer died. In a few days it will be 16 months since his funeral. We have not ordered a headstone. We have no plans for an unveiling. Neither of us seem to have the ability to think of what to write on another headstone. I hope to write a post before the end of this year to tell you about Sawyer’s unveiling. . .
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