It is complicated
August 8, 2012 at 9:26 pm | Posted in after death?, Grief, life after loss, Love, normal? | 10 CommentsTags: child loss, death, grief, hope, Jake, quotes, Sawyer, twins
It is complicated to explain. Or maybe it is not. The twins are doing and will continue to do things that Jake and Sawyer never did and never will. This is a fact. A bittersweet part of our lives.
There will be no first days and no last days. And nothing in between. Sometimes I play the pointless “What if” game. What if there were more time with Jake and with Sawyer?
I just read True Compass: A Memoir by Ted Kennedy. He included a letter his father Joseph Kennedy Sr. wrote to a friend whose son had just died:
Dear Jack,
There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. Nor is it any easier the second time than it was the first.And yet I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.
You never really accept it; you just go through the motions. Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something–something that he did not have time enough to do. And, perhaps, that is the reason for it all. I hope so.
Sincerely, Joe
I hope so too.
Boy with the dragon tattoo & his sister
July 26, 2012 at 10:57 pm | Posted in Cemetery, Grief, life lessons, normal? | 9 CommentsTags: baby loss, Charlie Brown, Growing Up, parenthood, quotes, Sawyer, twins, unexplainable
Thank you for all the well wishes. The cast has not slowed him down one bit.
Here he is with his toy green teeth chasing the girl with the butterfly tattoo around the house.
Ok, the cast did eventually tire him out. . .
Blue casts can really weigh a boy down
Now that he stopped chasing her she was free to accessorize a bit more.
Tattoo, a Crown & a Ring
What could be better?
They are making the most out of their last days as 4 year olds. She caught me off guard yesterday when she asked, “Will you take us to go see Sawyer and Jake for our birthday?”
“Yes, sure. Why?’ I responded while trying to figure out what happened that made a visit to the cemetery pop into her toddler brain.
“I love them. You don’t take us to see them often enough.”
She is right. I have not taken them to see Sawyer and Jake since the spring when she carefully arranged stones for her brothers. Over the past 5 years Evan and I have made the decisions about when and when not to bring the twins to the cemetery. Now that they have their own opinions I did not imagine we would be discussing trips to the cemetery.
“In the book of life, the answers aren’t in the back.” – – Charlie Brown
Odd but Ok
July 20, 2012 at 2:34 pm | Posted in Cemetery, Grief, life after loss, normal? | 6 CommentsTags: child loss, death of a baby, Jake, new not so normal, parenthood, quotes, Sawyer, unexplainable
Ever since Sawyer’s unveiling I have been watching the earth move farther and farther away from Jake and Sawyer’s headstone. Ground settles. No big deal. I kept checking. I thought about bringing some dirt and trying to fill it in. Stones started to fall into the crack. The split grew larger and larger. I decided to ask about it. I went to the office at the cemetery. The groundskeeper explained to me that a combination of ground settling and rain can cause headstones to sink. Not what I wanted to hear. He asked if I could show him the headstone and then he could determine the best course of action. Great. Action is good. In fact, fix it right now, please.
We drove out to Jake and Sawyer. I showed him the crack. He told me that they would lift up the marble and pack it down with more dirt. Ok. I asked, “Can we do that right now? ” He replied that he would put in a work order but it would not get done for a week or 2. I thought about it. Ok. Jake and Sawyer are not going anywhere. There is no urgency. The more I thought about it the more I realized that I was actually taking care of something for them. I will never give them a bath, brush their hair or help them get dressed. Oddly, I felt good about placing the work order to fix the crack between the earth and the headstone.
I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme,
and some stories don’t have a clear beginning, middle, and end.
Life is about not knowing, having to change,
taking the moment and making the best of it. . .” – Gilda Radner
Sibling Rivalry?
July 16, 2012 at 5:46 pm | Posted in Grief, life lessons, Love, normal? | 14 CommentsTags: child loss, death of a baby, Jake, parenthood, perspective, Sawyer, twins, unexplainable
On any given day our twins will be arguing over who is “bigger”. She is 3-4 inches taller. He is 1 minute older. I have explained these facts over and over again. So technically they are both right. However, in their 4-year-old (almost 5) minds this is not a satisfactory solution. I am not sure why but I continue to feel the need to unsuccessfully rationalize with them. Sibling rivalry at its finest.
The other day I was driving. The twins were in their seats in the back. It had not been a particularly good day. There had been arguing between the 2 of them. There had been time outs (or as it is known in our house, “the zone”). All seemed to have calmed down as I drove along until the question was asked. I have always known this question would be asked one day but somehow I was not prepared.
“Do you love Jake and Sawyer more?”
Silence.
“Mama, who do you love the most?”
More silence.
I realized that if I did not answer quickly this line of questioning would continue possibly forever. In case you did not know, 4 almost 5-year-olds can be very persistent.
“I love you all the same. I just miss Jake and Sawyer more. I can not hug them the way I hug you both.”
Simon’s Fund & Sawyer
June 28, 2012 at 7:02 pm | Posted in life after loss, Love, SIDS, silver lining | 5 CommentsTags: child loss, death of a baby, Dr. Michael Ackerman, Sawyer, SIDS, Simon's Fund, unexplainable, ways to honor the memory of your child
Simon’s Fund provides heart screenings, funds research as well educates people about sudden cardiac arrest. Simon Sudman “weighed six pounds, 15 ounces at birth with an APGAR score of eight and nine. He was at 50% for weight and 25% for height and every few hours, he’d finish a bottle (except for a four-hour stretch overnight). ” Everything seemed very normal. However, Long QT (a hereditary heart condition) ran in their family. Simon died when he was just a few months old.
The Sudman’s created Simon’s Fund in memory of their baby boy. The mission of Simon’s Fund is “To save a child’s life . . . and then another, by raising awareness of conditions that lead to sudden cardiac arrest and death.” According to their website they have screened 3, 948 hearts and saved 38 lives. After his death, Simon’s mother, discovered that she had Long QT. She was treated and is fine now.
According to a study by doctors David Tester and Michael Ackerman, 15% of all sudden infant deaths are due to arrhythmias.
I thought for about a year that Sawyer died from Long QT. Sawyer’s pathologist was able to put Sawyer’s cord blood in Dr. Ackerman’s study at the Mayo clinic. Dr. Ackerman was able to determine that Sawyer did not have Long QT. Sawyer will remain in the study. Maybe one day they will determine his cause of death. Maybe they will never know what caused Sawyer’s heart to stop.
If Sawyer had died 5 or 10 years ago his death certificate would have listed his cause of death as SIDS. Now, doctors like Dr. Ackerman have helped to discover that many SIDS cases are actually due to undetected heart conditions. I cannot express in words how much I wish that Sawyer had a heart screening (along with a pulse ox screening). I am so grateful that families like the Sudmans are bringing awareness to how heart screenings at birth can change the whole world.
Cora’s Story & Compromise
June 22, 2012 at 2:02 pm | Posted in CHD, Grief, Love | 7 CommentsTags: child loss, congenital heart defect, cora's hopes and dreams, cora's story, death of a baby, hope, pulse ox, Sawyer, twins, ways to honor the memory of your child
Cora was a full term healthy baby girl born on November 30. The pregnancy, birth and delivery were all uneventful. Cora’s Apgars were both 9s. She died on December 6 while breastfeeding in her mother’s arms. After her death, Cora was diagnosed with a congenital heart defect (CHD).
Her mother, Kristine, created a non-profit which is spreading CHD research, resources and information in memory of Cora. CHD is actually the most common birth defect – it occurs in 1 out of 100 births. There is no cure but early detection is sometimes possible with a pulse ox screening. Screenings are a low-cost, noninvasive way to potentially detect CHD.
Cora’s mom is also advocating for every baby to receive a heart screening at birth. Cora might not physically be with us now but as her mom writes so eloquently, “Cora is saving lives now.”
Cora and Sawyer were born in the same month of the same year. They both died that year too. Sawyer’s preliminary reports also indicated an issue with his heart. We still do not know exactly what happened to Sawyer but I know that I wish he had received a heart screening at birth. Thank you Kristine for sharing Cora with the world. She is truly saving lives.
Compromise:
She really wanted to go swim in the pool. He really wanted to play pretend at home. After a lot of pleading, crying and whining they finally reached a happy compromise.
Molly Bears and Mixed Blessings
June 16, 2012 at 7:48 pm | Posted in Grief, life after loss, normal?, silver lining, Time, twins | 6 CommentsTags: Aching arms, bereaved parents, Buddha, child loss, death of a baby, Jake, Molly Bears, Sawyer, twins, unexplainable, ways to honor the memory of your child
Mixed Blessings:
The twins have finished another year of preschool. This is what I want. I want them to be healthy. They should grow up, unlike their brothers who are frozen in time. So why do I have such mixed emotions as yet another year flies by? There is so much to look forward to as the twins get older. Is it the fact that there is nothing to look forward to for Jake and Sawyer? Or, is it because the twins might be leaving preschool behind and starting kindergarten?
Which brings me to reason #2 I am a mixed-up mom at the moment. The twins’ birthday is 8 days before school here starts. They will be among the youngest in their class. Many of the neighborhood children who I thought would be starting kindergarten with them are going to another year of preschool (or pre kindergarten). Evan and I have a few options for the twins. Whatever we decide will work for our family. In the meantime, I will keep repeating the words of my therapist or Buddha (or maybe both. . .) “everything is exactly the way it should be right now.”
Molly Christine died at 34 weeks, on May 30th 2010. A high school friend gave her parents a weighted teddy bear. Molly’s mom added rice to the bear so that it was the exact weight of Molly at her time of death/birth. While nothing will replace Molly it helped her mother to hold the teddy bear. Her mother began to make Molly Bears for other bereaved parents. They have received over a thousand orders and so far have created hundreds of bears. Molly Bears are now with families in all 50 states and 13 countries.
Evan and I ordered bears for Jake and Sawyer. We are looking forward to holding them in our arms.
Right Where I am: 6 years, 9 months, 2 weeks and 2 years, 5 months and 2 weeks
June 10, 2012 at 5:52 pm | Posted in Grief, life lessons, Love, normal? | 11 CommentsTags: child loss, dark days, death of a baby, grief, Jake, post traumatic stress disorder, Sawyer, twins
I am joining still life with circles for right where I am. Angie started this project last year. She asked other bereaved parents to write about where they were in their grief.
Am I 6 years, 9 months, 2 weeks from the last time I held Jake? Or, 2 years, 5 months and 2 weeks from the last time I saw Sawyer alive? (or I suppose it could even be the 2 or so months since the miscarriage). To be honest, I do not know where I am except right here.
I no longer cry every day. However, there is not a day which goes by that I do not think of them. Now I am answering bittersweet questions and telling their brother and sister about them.
My arms no longer constantly ache to hold them. However, the moments when they do ache are still so sharp and real. I hug their siblings just a bit tighter.
I can now talk about Jake and Sawyer without the lump in my throat threatening to choke me. However, the sadness and lost dreams are still there. Now they are part of me.
Just like the early days of this journey of grief I take it all one day at a time. I breathe. I put one foot in front of the other. I stay really busy. I try to be the best mother, wife, daughter, sister, friend and person that I can be. I do not always succeed. Sometimes I cry and the days are dark. I try to hope. I look for rainbows. I love and miss my 2 little boys. I live.
Wish for Wendy, Wings & WTMI
June 4, 2012 at 9:46 pm | Posted in Grief, life after loss, silver lining, twins | 8 CommentsTags: child loss, cystic fibrosis, death of a baby, family, Jake, Sawyer, twins, Wish for Wendy
Way Too Much Information:
We were at the pool the other day and I put our things down on a chair beside a woman with her newborn baby.
Our daughter quickly turned to the woman and with a big smile said, “I really like your baby.”
“Thank you! How old are you?” responded the very new mother.
“4 and 3/4 . So is my brother – we are twins. We had 2 babies too but they are dead.” She shrugged her shoulders and ran off towards the pool.
Silence. How many times can an already broken heart be broken again? I shrugged my shoulders and ran after her.
Wings:
Andy Lipman never met his older sister Wendy. She died when she was 16 days old from complications from cystic fibrosis. Andy was born 3 years later, also with cystic fibrosis.
I have written about Cystic fibrosis (CF) in previous posts. Charlie, one of my brother’s closest friends, lived over 26 years longer than doctors had originally predicted. CF is an inherited, chronic disease that affects the lungs and digestive system of about 30,000 individuals in the United States, and 70,000 people worldwide. In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical care have enhanced and extended the lives of children and adults with CF. While Andy’s prognosis in 1973 projected that he would not live to become a teen, Andy is an active adult and sports enthusiast with two young children.
In August of 2006 Andy and his family founded the Wish for Wendy Foundation, Inc., a nonprofit organization dedicated to increasing awareness about living with cystic fibrosis and supporting efforts to find a cure.
As I previously mentioned, I have decided that I am going to add a feature to this blog which focuses on families who are making the world a better place by honoring the memory and lives of their children. If you know of or come across any organizations that would be worth mentioning please let me know.
Frog & Toad
May 20, 2012 at 11:50 pm | Posted in Grief, twins | 7 CommentsTags: child loss, dark days, death of a baby, Jake, post traumatic stress disorder, Sawyer, twins, unexplainable
“What is the matter, Toad? You are looking sad.”
“Yes,” said Toad. “This is my sad time of day.”
Frog and Toad are Friends by Arnold Lobel
After Sawyer died I cried a lot in front of the twins. They were 2 1/2 year olds at the time and did not ask too many questions about my tears. Now, over 2 years later, the twins ask questions about everything and I rarely cry in front of them. The sadness is still there but I have better control over it. Every once in a while it gets the best of me and the tears leak out against my will. Today was one of those days. I know it is not just today – it has been creeping up on me over the last few months.
I know that there will be other days when the tears take over. It is ok to be sad but it is also ok to be happy. If not for me than for them.
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