August & Awkward Appointments (part 2)
August 18, 2011 at 11:48 pm | Posted in Grief, mourning, pregnancy, silver lining, twins | 7 CommentsTags: child loss, grief, Jake, life after loss, parenthood, Sawyer
As I wrote about previously in this post, doctor’s appointments can at times be awkward. I am not a big fan of the forms that you have to fill out about your medical history. I understand why they are necessary but I truly dislike listing the birth and death dates of Jake and Sawyer. The OB forms do not even have enough lines for me to write all of the complications before and after pregnancy that we have had. I am sure one day these forms will not bother me but today they do.
The twins had their 4-year-old check up today. A new nurse came to get us from the waiting room. As she brought us into the room she asked me, “Are you expecting company?” I looked at the twins and Evan and thought to myself, “how many more people can we fit in this tiny exam room?” And, who else would I be expecting? Then the nurse looked at my stomach and repeated the question. My quizzical look turned to horror. Really, is she really asking me if I am pregnant? Yes, she did.
That question is emotion-packed. The times when I answered yes to that question – thoughts of being pregnant with Jake, the twins and Sawyer. The realization that my stomach apparently still has a pregnancy pouch. Or, maybe I just made an unfortunate outfit choice.
The nurse was reading over our medical charts as my mind was still racing. I could see in her eyes that she had just read about Sawyer, Jake or maybe both. She looked at me and apologizes.
Overall the day was a success. One outfit for Good Will. Two healthy twins. Three weeks down in August. Four beautiful children.
Just Jake
August 14, 2011 at 4:34 pm | Posted in Death, Grief, hospital, mourning, parents, silver lining | 21 CommentsTags: death, grief, happy, Jake, life after loss, parenthood
Dear Jake,
I cannot believe that you would have been 6 years old today. In some ways it seems like so long ago since I held you and in some ways it feels like last week. I have so much to thank you for and I do not think I have ever told you.
First, I would like to thank you for choosing us to be your parents. I remember running downstairs after taking the pregnancy test and seeing the positive result. I could not wait to tell your dad. I was completely filled with joy. I have not been truly happy since that day. Do not take this the wrong way, I have been happy. It is just a different kind of happy and it is often bittersweet. That wonderful March day I was just so blissfully unaware of the tragedies that life could and would bring.
Second, you made me understand how short and precious life really is. You showed me in your brief time with me how pure and simple love can be.
Lastly (at least for now), I want to thank you for the strength you have given me. It is difficult for me to explain but the night your youngest brother Sawyer died you are who was with me. In the emergency room, you are the one who held me up in the hallway. I am sure without you I would not have been able to stand let alone walk. I kept telling myself if I could live in a world without you, I could and would somehow find a way to live without Sawyer.
I wish that we were having a birthday party with you today. We are not. Perhaps you are having a cosmic celebration with your little brother, your Mom Mom and your great-grandmother. Whatever you are doing please know how much I love and miss you.
Beaches & Bad Questions
July 24, 2011 at 10:36 pm | Posted in Grief, mourning, parents, twins | 3 CommentsTags: death, happy, Jake, life after loss, parenthood, Sawyer
I have always found the beach to be very peaceful. However, it is not always super relaxing when you go with children.
I had to leave the last few days to go to work. I did not plan the week this way but had to change things around because of the previous week.
I am a consultant and often go to offices where I have never met anyone before I arrive. I taught a class where we were waiting for a few minutes for everyone to show up. While waiting the people already there were talking about their dogs. They asked me if I have any dogs. Easy question. I have 2 dogs. I even showed pictures of the dogs with the twins. All is well.
The last person to leave the class turns to me and says, “I do not mean to get personal but are you going to have more children?” I thought I had completely avoided the “how many children do you have” question with the easy dog conversation. No such luck.
After thinking for a few moments, I tell her that we already had more children. Jake was very premature. Sawyer was full term, went to sleep and did not wake up. I quickly change the subject.
Later the same day, I am working with someone who is receiving texts from his daughter. He asks if I have children. I answer that we have twins at home. I think this answer sounds pretty good. And, then there it is again. . .”Do you think you will have more children?”
Sometimes I think that I should consider going into some kind of work where talking is not required. . .
Hospitals, Hernias & Holidays
July 2, 2011 at 11:32 pm | Posted in emergency room, Grief, hospital, parents, twins | 10 CommentsTags: fathers, hernia, Jake, motherhood, Sawyer, twins
Yesterday I called Evan and told him to come home immediately. As I hung up the phone, I questioned if I overreacted. We had been at a close friend’s house playing. All was normal except when we left one twin ran to the car and the other was dragging his left foot. I asked if he wanted me to pick him up. It is not unusual for him to get tired and ask to be carried. However, when I picked him up he screamed to be put down.
Finally I got everybody in the car. As I drove I thought maybe he was having an allergic reaction. Maybe he could not walk because his feet were swollen. Or maybe his shoes were too small and he needed new shoes. I opted to stop at CVS rather than the shoe store. At this point, they both were screaming. She wanted ice cream. He wanted to sit down. After buying Benadryl, 2 toy cars and frozen yogurt to go, we were back in the car. I made the call to Evan. One of us needed to take him to the doctor.
At home I stripped him down to look for hives. He was very swollen in his groin area. Evan got home and took him to the after hours pediatric urgent care. I fully expected a call telling me there was an unexplainable allergic reaction (like many others in the past) and the hives would be gone in the morning.
Instead Evan called to tell me that he was on his way to the ER. The hive was actually a hernia. I needed to go to the ER. Luckily, I was able to drop off the well twin back at our friend’s house. Thank you again!!
I got to the ER just in time for the ultrasound. He screamed, cried and begged (politely) for the ultrasound technician to please stop. Evan and I held him down. Ok, Evan held him down. I had to go cry in the hall.
After the ultrasound we waited to speak to the surgeon. While waiting, I went to the bathroom. The bathroom was right across from this hospital’s “consult room.” The “consult room” was where Evan and I held Jake for the last time. It was where we were when the ER doctor told us that Sawyer was dead. They were different “consult rooms,” in different hospitals but they looked the same. Standard issue plastic couch and chair. Generic flowery art. Striped carpet.
As I reached the door of our ER room I looked through the glass panel of the door. Evan was holding hands with our very much alive son. I thought of the glass partition which Alice Wisler so insightfully used to describe bereaved parent’s desire to be so close and so distant from their living children. I walked back into the room.
The surgeon arrived. He originally said that we would be checked in and surgery would be the next morning. An hour or so later, we were told that due to life threatening cases and the holiday weekend we would need to go home. We were discharged early this morning. Surgery will be scheduled for this week. I am going to kiss the twins one more time right now.
There is no place like home
June 28, 2011 at 11:18 pm | Posted in Grief | 3 CommentsTags: child loss, Jake, life after loss, Sawyer
“It always amazes me to think that every house on every street is full of so many stories;
so many triumphs and tragedies, and all we see are yards and driveways.” Glenn Close
Evan and I bought our first house the year we got married. It was a 3 bedroom house. Our bedroom, a guest bedroom and what we hoped would be a baby’s room. Jake, our first-born, never came home. However, during the time I was pregnant and while Jake was alive, we referred to the 3rd bedroom as Jake’s room.
After Jake died, I was not able to go into the room. I shut the door. I desperately wanted to move or renovate the house so that Jake’s room no longer existed. I cannot explain my anger toward the house but it was very real. Evan and I started to look for houses with a real estate agent.
Luckily, someone wisely advised us not to make any major life changes for at least 6 months to a year after Jake’s death. We stopped the house search for the time being.
Eighteen months later when we found out that we were expecting the twins my need to move resurfaced. I did not want the twins to sleep in Jake’s room. Once again, we started the house search. We had a contract on one house and it fell through. I resigned myself to staying in our house.
Miraculously, we found another house when I was 8 months pregnant. Everything fell into place. We moved up the street from our old house. Whatever bad house karma was there I was convinced we were leaving it behind us. The twins came home from the hospital to their own room. Jake’s room was still down the street.
Fast forward to the November, 2009 – Sawyer came home. The night of December 25 he went to sleep in his room. At 2:46 am on December 26th the paramedics were performing CPR on Sawyer on our bedroom floor. We are still not sure but it is very possible that Sawyer died in our house that night.
So after leaving one house where Jake had a room which he never slept in, we now live in another house where Sawyer came home, lived for nearly 6 weeks and died. Funny (or maybe not so funny) how life works. I am not angry at the house this time. It does not matter where I live – my memories of Jake and Sawyer will always move with me.
My Real World
June 22, 2011 at 11:02 pm | Posted in Grief, mourning, silver lining, twins | 3 CommentsTags: child loss, hope, Jake, life after loss, Sawyer, twins
“Out of clutter find simplicity; From discord find harmony;
In the middle of difficulty lies opportunity.”
– Albert Einstein
Some mornings I wake up and have to remind myself of my reality. Is it true I have out lived 2 of our children? Was Jake really born 14 weeks early? Was Sawyer just a brief wonderful figment of my imagination? After the morning fog clears I know with unnerving certainty that they are both dead and I am alive.
People tell me (and I remind myself) how lucky I am to have the twins. Which of your children would you live without? Why can I not wake up in the morning with all 4 of my children?
I get up and face the day. I try my best to focus on my simplicity, my harmony and my opportunity:
Confessions
June 10, 2011 at 1:23 pm | Posted in Grief, mother, mourning, silver lining, traditions, twins | 5 CommentsTags: child loss, grandparents, hope, Jake, Sawyer, twins
When I was young I loved to travel. I would travel whenever I could for work or fun. After Jake died my desire to travel was gone. I wanted to stay home so I could visit the cemetery.
I have met a few other people while visiting the cemetery. One grandfather visits his grandson’s grave every day. He also takes care of the family plot. Year round he is out there cleaning the headstone, cutting the grass and maintaining the plot. Although I no longer go every day, I frequently want to go to the cemetery.
One day I spoke to the grandfather about visiting the cemetery. He said that it helps him to take care of the plot and visit every day. I 100% understand and relate to being drawn to the cemetery. However, I wanted to know how he felt if he ever missed a day. He is from the area and his whole family lives within a few minutes of the cemetery. He has not missed a day since his grandson died over 3 years ago. I think it is great that he has found a way to comfort himself.
I on the other hand, have family who lives out-of-state. I no longer travel often for work but I do take trips to visit family and friends. Every time I am away I stress about not being able to visit Jake and Sawyer’s grave (as I have written about before they share one plot).
When we were snowed in this past winter I did have fun playing with the twins.
However, I worried about not being able to check on my other 2 children. I know that they are not really there but I like to check on the little piece of land in the cemetery. It gives me a brief sense of being able to take care of Jake and Sawyer.
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 check.
I hold his memory dear to my heart,
And dream of holding him in my arms.
Author unknown
I know that frequent visits to the cemetery might sound morbid to some people. Just like with birthdays I do not think there are any rules in this area. We all find comfort in different ways. The path in the journey of grief varies – even if you are grieving the same person (or people). Visit or do not visit the cemetery. Do what ever helps you at the time.
Not an Unhappy Birthday
June 6, 2011 at 11:14 pm | Posted in Death, Grief, mother, silver lining, traditions | 4 CommentsTags: gratitude, hope, Jake, Jewish customs, mom, Sawyer
“Don’t cry because it is over. Smile because it happened.” Dr. Seuss
Today would have been my mother-in-law’s birthday.
Last year at this time the whole family was celebrating her birthday at the beach. This year is a very different story. I do not believe that there are any rules in this area. So, I have made up my own. On Jake’s and Sawyer’s birthdays I light a candle. I want to celebrate their birth and their life.
A few other ideas about celebrating a deceased loved one’s birthday are the following:
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Write the person a letter
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Visit the cemetery
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Release balloons
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Plant a tree in their honor
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Make a donation in their name
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Tell stories/look at pictures
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Whatever brings you any comfort (no matter how slight it might be)
The world is a better place because Jake, Sawyer and my mother-in-law were in it. Happy Birthday Shelley.
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 & 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
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