Birthday Wishes

July 30, 2012 at 9:50 pm | Posted in Grief, life lessons, Love, silver lining, twins, why I write | 9 Comments
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Happy Birthday!

As I wrote last year on your 4th birthday I am so very thankful for you two.   I am sorry that I did not take you to see your brothers on your birthday.  I just could not this weekend.  I promise that I will very soon.  Then I will take you out for ice cream (thank you Daphne for the brilliant suggestion).

I wish that you had a chance to know your brothers.  I wish that I did not have to explain death to you at such an early age.  I wish that some of your first sentences did not include “don’t cry mama.”

I wish I could find a picture of you from your 3rd birthday.  I will confess to you now that we almost did not have a party for you that year.  After Sawyer died the thought of planning a party was so daunting.  We realized that you no matter how sad we were you 2 deserve happiness (and a birthday party).  We did plan it and if I remember correctly we sent out the invitation the week before.  You both had a great time.  I just wish that 2010 was not such a blur of grief.

I wish that I could have protected you from my dark days.  I wish that you will always know how much sunshine you both bring to me.

I wish that you will continue to look for rainbows where ever you both go and that I can go with you.  And hug you both tightly.  Love you both to the moon and back.

Kindness

July 24, 2012 at 8:58 pm | Posted in Grief, life after loss, normal?, silver lining | 2 Comments
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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

Imagine this:
All around the world,
on this one day of the year,
mourners will be transforming their grief into a
powerful message of
love, hope, peace, and kindness!

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 Comments
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4th of July

Happy 4th of July!

Faces of Loss

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 Comments
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Simon’s Fund

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.

Sawyer 

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 Comments
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Rockstar Ronan

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.

Rainbows

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.

Molly Bears and Mixed Blessings

June 16, 2012 at 7:48 pm | Posted in Grief, life after loss, normal?, silver lining, Time, twins | 6 Comments
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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 Bears:

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 Comments
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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:

Wish for Wendy:

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 postsCharlie, 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.

Purple & Sparkly

May 12, 2012 at 10:14 am | Posted in Anniversaries, Grief, Love, silver lining | 10 Comments
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Some time after Jake died one of my favorite friends and college roommate suggested that I read the blog The Sphors Are Multiplying.  Years later and some time after Sawyer died another of my favorite friends suggested that I read another blog, Rockstar Ronan.  At that time I could barely deal with our own sad story let alone read about the deaths of Maddie Sphor and Rockstar Ronan.  I am not sure when but some time along the way I realized that I needed to see/read how other parents survive the deaths of their children.  It helps me to read how they are continuing their lives while always remembering and honoring their children.  I wish no parent had to live in a world without their child/children.  This is not the reality and unfortunately the Club continues to add members.

Today would have been Ronan’s 5th birthday.   I hate that he is not here to celebrate.

Once Upon a Playdate

May 10, 2012 at 10:00 pm | Posted in Grief, life after loss, silver lining, twins | 4 Comments
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“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”  Elizabeth Stone

I was not able to prevent Jake or Sawyer’s deaths.  As their mother, I thought I could/should be able to protect them from anything and everything.  I was wrong.   I try my best to keep the twins as safe as possible.  I know that just like with Jake and Sawyer I will not be able to shelter them from anything and everything.  It is a work in progress . . .

There once was a little boy who would talk on and on about his friend, G.  He thought about having a playdate with her but was not quite sure he was ready for his mom to make the call to set it up.   Then one day G’s mom and the little boy’s mom made a plan to play after school.

After he found out about the plan, the little boy would wake up every morning and anxiously ask, “Is today the day that G is coming over to play?”

Finally the big day arrived.  At school, there was a field trip to a park.  The little boy’s mom was one of the drivers.  On the playground, the little boy ran up to his mom and sadly declared, “G changed her mind and she is not coming over to play today.”  The little boy’s twin sister came running up right behind him and just for emphasis yelled “G is NOT coming over ever.”

The little boy’s mother tried to say comforting things like, “maybe G will change her mind” and “if G does not come over today we will find another day for a playdate.”  The little boy folded his arms over his chest and sadly said, “Mama, this is the worstest day ever.”

The field trip ended and all the children went back to school.   The little boy asked G again if she would come over for the playdate.  She responded that should would never ever come over.

The little boy’s mom tried unsuccessfully to think of an extra special treat for the afternoon.   Pick up time arrived and G hopped into her car.  The little boy unhappily watched her as she climbed into her minivan.   The little boy’s mom as a last-ditch effort went over to G’s car before it drove out of the carpool line.  G smiled at the little boy’s mom.   G climbed out of her car seat and said, “I think I would like to go on that playdate now.”

And they played happily ever after.

Thank you!

April 28, 2012 at 8:06 pm | Posted in Grief, Love, silver lining, why I write | 4 Comments
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2 words today:

THANK YOU!!

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