A Happy Day
August 16, 2012 at 11:42 pm | Posted in life after loss, Love | 13 CommentsTags: birthday, family, fathers, life after loss, new not so normal, perspective, quotes
“Today you are you! That is truer than true!
There is no one alive..…who is you-er than you!
Dr. Seuss “Happy Birthday To You!”
HAPPY BIRTHDAY EVAN!
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.
Kindness
July 24, 2012 at 8:58 pm | Posted in Grief, life after loss, normal?, silver lining | 2 CommentsTags: child loss, dark days, death, Dr. Joanne Cacciatore, MISS Foundation, new not so normal, perspective, quotes
I, along with the rest of the world, do not understand the horror that took place last week in Colorado. There are no words which seem adequate for such a tragedy. The families left behind have a devastating hole in their lives and way too many unanswered questions. Life is not fair. However, a few things I read gave me some hope:
1. An article about the “Tales of Heroism. . .”. “Even as a masked gunman kept firing a hailstorm of bullets in a Colorado movie theater, acts of selflessness and heroism sprouted from all across the room. Three of the 12 people killed died while shielding their girlfriends from the gunfire. And a young woman risked her life to aid her wounded friend, refusing to leave her side.”
2. My friend Kelcey over at Mama Bird Diaries focused on the helpers in the tragedy. Kelcey posted the following quote she found through Ann Imig.
“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of “disaster,” I remember my mother’s words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” -Fred Rogers
There is so much darkness in the world that sometimes it is hard to see the light. But light, hope and rainbows are there, just some days you have to look much harder than others.
More kindness. The MISS Foundation’s Dr. Joanne Cacciatore started the Kindness Project in 1996 as a way for families to cope with the tragedy of a child’s death. Since then, more than 1,000,000 kindnesses have been committed around the globe in memory of children, gone too soon.
Anyone can participate in memory of anyone!
Here’s what you do:
Visit the MISS Foundation’s International Kindness Project Day website:
www.KindnessProjectDay.org
The boy with the dragon tattoo (and the blue cast)
July 22, 2012 at 8:36 pm | Posted in life after loss, normal? | 8 CommentsTags: motherhood, parenthood, perspective, twins
Thursday I was at work and saw that I missed a call from the twin’s camp. One of the twins had fallen. If I had placed a bet it would have been on her. Her mind has always raced far ahead of her body which often causes her to fall. However, I was wrong.
Here he is before getting an x-ray. If you look very closely at his hand you can see that it has a dragon tattoo. Well at least most of a dragon tattoo. Putting on those temporary tattoos in not one of my strong points. They somehow are always missing part of the tattoo – in this case it is a dragon body with not so much of a dragon head.
The x-ray showed a small fracture. Now the headless dragon is covered up by a blue cast. . .
Wonder what the dragon will look like in few weeks?
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
Avery’s Bucket List
July 10, 2012 at 5:40 pm | Posted in after death?, life after loss, Love, normal? | 2 CommentsTags: Avery's Bucket List, child loss, death of a baby, hope, parenthood, Spinal Muscular Atrophy, ways to honor the memory of your child
“Be kind, for everyone you meet is fighting a hard battle.” Plato
I recently stumbled upon Avery’s Bucket List. It is a blog by Avery’s parents. Avery was diagnosed with Spinal Muscular Atrophy. Her parents decided to create a bucket list for Avery and spread the word about SMA.
According to FightSMA.org, SMA is a genetic disorder which ” refers to a group of diseases which affect the motor neurons of the spinal cord and brain stem. These critically important cells are responsible for supplying electrical and chemical messages to muscle cells. Without the proper input from the motor neurons, muscle cells can not function properly. The muscle cells will, therefore, become much smaller (atrophy) and will produce symptoms of muscle weakness.”
Throwing the first pitch at a baseball game, have a bad hair day and party like a rockstar are just a few of the items Avery crossed off her bucket list before she died. Avery’s parents have continued her bucket list. Every day she is continuing to raise awareness and funding for a cure for SMA.
What is on your bucket list?
Fourth of July & Faces of Loss
July 4, 2012 at 9:44 am | Posted in Grief, life after loss, Love, silver lining, why I write | 2 CommentsTags: 4th of July, child loss, death of a baby, Faces of Loss, hope, ways to honor the memory of your child
4th of July
Happy 4th of July!
Stevie Joy, was stillborn on May 8th, 2010, when Kristen Cook was 26 weeks pregnant. Her perfect pregnancy came crashing down in an instant the moment she heard those shocking little words: “there is no heartbeat.” Among the devastation the feeling of complete isolation and loneliness comes along with the death of your child. Kristen began to search the internet and quickly realized that she is not alone. Pregnancy and child loss does not discriminate it affects families of all walks of life. There are members of the club all over the world. As Kristen writes, “It’s not just something that happens to “other people,” it can happen to anyone. I realized there were so many other nice, normal people like me who had gone through the death of a child. And they were surviving. That realization gave me hope.”
Kristen took her hope and created a place for women to share their stories and faces. Faces of Loss, Faces of Hope brings awareness to the issue of pregnancy/infant loss. Kristen’s hope is that by “telling the world we are not afraid to show our faces and tell our stories, barriers will be broken down. Taboos will be broken, and lines of communication will be opened.”
I have shared our story. I wish none of us had to live in a world without our child/children. Thank you Kristen for helping us to know that we are not alone and that we can survive.
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.
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.
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.
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