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.
Rockstar Ronan & Rainbows
June 24, 2012 at 10:52 pm | Posted in Grief, life lessons, Love, silver lining | 3 CommentsTags: child loss, childhood cancer, death of a baby, hope, neuroblastoma, rainbows, Rockstar Ronan, ways to honor the memory of your child
In August of 2010, Ronan was diagnosed with Stage 4 Neuroblastoma cancer. He died on May 9, 2011 in his mother’s arms after an 8 month battle where “he never gave up until he was told it was time to let go.” Maya made her son a promise that she would continue to fight for him until cancer survival rates start to improve and eventually a cure is found. The Ronan Thompson Foundation was created.
Childhood cancer is the number 1 disease killer in children. Pediatric cancer only receives 3.8% of all cancer research funding. Maya is out there finding the doctors who will make the most difference in fighting childhood cancer. The Ronan Thompson Foundation is raising money to fund the research. Maya meets with and helps other families with children who have neuroblastoma. Maya has also created a list of things that we can all do to help and live like Rockstars.
I know that what I am writing here is a fraction of all that Maya and Ronan have done and continue to do to change the face of childhood cancer. However, I do know for certain that Maya and Ronan are changing the world for the better.
As always I am still searching for rainbows. Here is the one I found today. . .
Thank you to Glenda for suggesting I write about Rockstar Ronan. Thank you also to Jessica who mentioned Molly Bears. If you have any other organizations that you would like me to write about please let me know.
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.
Peace Bears, Picking Berries & Pink & Black Glasses
June 12, 2012 at 10:40 pm | Posted in Grief, life lessons, twins, why I write | 7 CommentsTags: Aching arms, child loss, death of a baby, Peace Bears, ways to honor the memory of your child, Wish for Wendy
Pink & Black Glasses:
Before
After
Picking Berries:
Peace Bear Project:
Peace Bear Project, Inc. is a 501(c)(3) non-profit organization for families grieving a stillbirth or early infant death. This non-profit was created by the parents of Peace A. Young who was stillborn on July 20, 2005. In her memory, they deliver teddy bears to other families leaving hospitals with empty arms.
Thank you Cheryl for writing to me about Peace Bears. Also, thanks so much to Hillary for letting me know about Wish for Wendy and to others who have let me know about organizations I will write about soon.
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