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.

Running with the Rosebuds

March 20, 2012 at 10:48 pm | Posted in after death?, life after loss, Love, normal?, twins | 7 Comments
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Last weekend the twins ran in a race to support Cystic Fibrosis.  One of my brother’s best friends, Charlie, had CF.  Cystic fibrosis 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. Many people with the disease can expect now to live into their 30s, 40s and beyond.

Charlie’s parents were told that he would not live to be a teenager.  He beat the odds and he did live past his teens, twenties and into his thirties.  Charlie was an amazing person who inspired all who were lucky enough to know him.  I hope that Jake and Sawyer have somehow been able to meet Charlie.

Both Evan and his sister have been diagnosed with lung diseases which CF research could potentially one day help.

Click here to see the twins race warm up.

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