Saturday, September 08, 2012

The Story of Christmas & Silly Socks


This is a post I wrote in the fall of 2000.  The updates are below the Christmas Socks Story.  
To read more about Jessica's CHDs (Congenital Heart Defects) click here and here. To learn more about Jessica's 5 heart surgeries please click here.  


CHRISTMAS SOCKS


We are wearing or carrying Christmas socks this year with the faith and prayer that Jessica can be healthy and strong to enjoy this Christmas. This tradition was started with a little girl, Becca, who was critically ill following a heart surgery. A loving nurse placed a pair of Christmas socks onto Becca's small feet with the faith that she would survive to see many more Christmases. Becca miraculously recovered. Another year, a young girl (Jessica Joy) was having serious complications following a heart surgery and Becca's mother
sent Jessica Joy's mother some Christmas socks as a token of her prayers and faith that she would recover. Jessica Joy also made a miraculous recovery. This story was told to an online support group called pdheart (an online support group through CHIN).  And so the tradition of wearing Christmas Socks as a visual form of love, 
support and prayers was born.

I came online in the fall of 2000 looking for a support group that I
 could join so I could offer support to other families.  After posting an introduction about Jessica's status of being inoperable and declining in health, a lot of families began to reach out to us.  I went online to offer support and in return I received more love and support than I ever imagined!  People around the world have started wearing Christmas socks in support of our Jessica this year. We have been so amazed by the love and support we have received from all around the world. We invite you to either wear or carry Christmas socks right along with us.  My family will all be together for this wonderful holiday and we pray that Jessica can enjoy this Christmas since she is terminally ill and her health is deteriorating quickly.

UPDATES:

Within a couple of months of my first post about Jessica on pdheart there were about 12 countries and well over 2,000 people wearing Christmas socks in Jessica's honor.  It was a way for them to show their love and support as well as a visual way to show that they were praying for her.  One Jewish lady asked if she could wear Hanukkah socks instead of Christmas socks and I said OF COURSE!!!  I received emails from other people of other faiths and they wore whatever type socks that made them think of Jessica. A local news station found out about the Christmas socks and they did an interview with our family.  It was October and people were wearing Christmas socks!   

Some people sent gifts, cards and even Christmas socks to Jessica from several different countries all over the world.  It was so fun for her to receive those gifts.  It touched our hearts that so many people would reach out to a terminally ill child.

Jessica and Mommy with a floral arrangement sent to Jessica from a CHD family.


Here's just a few cards and letters Jessica received in the mail.  

  
Three generations.  Grandma Julie Taylor, Mom (me) and Jessica


back = Me; L-R = Aunt Mandy, Jessica and Aunt Karen


Wearing Christmas socks:  L-R
Aunt Alice (only one foot in photo), Aunt Mandy, Jessica (purple pants), Aunt Karen and me



Oma (grandma) Jensen with Jessica


pictured: Aunt Alice, Justen, Opa and Oma Jensen, Jessica and Marcus


Our family photo for Christmas 2000


Miss Jess after a haircut.  She LOVED it!




After the holidays I started getting emails asking what type of socks they should wear next?  Valentine's Day socks, Easter socks, Spring socks, polka dotted, striped, bright colored and even socks with butterflies on them were being worn instead of Christmas socks. There were so many people who loved Jessica and wanted to show their love, support and prayers.

Over the years Jessica's health was yo-yoing and she came close to death numerous times.  In 2004 she started having lung bleeds which was extremely scary.  After some testing it was determined that there wasn't anything they could do for the lung bleeds and we were advised to put her into a home-hospice program.  Any one of the lung bleeds could be fatal and she was having them almost daily.  Jessica was admitted into hospice in July of 2004.  The hospice nurse went with me to an appointment with the pulmonologist and she recommended using morphine daily.  She said that the hospice had seen some improvement with other patients when they used a small amount of morphine daily.  To our amazement the morphine worked and Jessica was released (kicked out - lol) from hospice the summer of 2005.  

  Jessica developed Ischemia of the Bowels which is a terminal disease if surgery isn't possible - and Jessica's was inoperable.  That condition is extremely painful and was so hard on her. On top of that Jessica's heart was in congestive heart failure and she was having up to 10,000 PVCs (premature ventricular contractions = arrhythmia) every day.  Through all this Jessica kept up her happy demeanor and continued to bless our lives with laughter, smiles and hugs.

In 2010 Jessica's ischemic bowels got to the point to where she wasn't able to eat much at all.  She was hospitalized the week after her 22nd birthday in June (of 2010) for congestive heart failure.  I knew her health had been deteriorating for a long time but it was hard to hear that it was time for hospice again.  By the end of July Jessica was very ill and she completely stopped eating by August 1st.  During that time a lot of people pulled out the Christmas and Silly socks in Jessica's honor.  As Jessica continued to fade, more and more people were wearing their Silly Socks in her honor.  They even started an event on Facebook.  They had a special day of prayer and wearing Silly Socks for Jessica.  


Jessica, Renee (Jessica's best home-health aide) and I wore Christmas/Silly Socks when the facebook group wore them.  I'm on the left wearing two different socks, Jessica is the one with the purple pants in the center and Renee is on the right. 



Jessica passed away on October 4th, 2010 with her loving parents by her side.  She continues to be an inspiration to many.  She wasn't expected to survive childhood and yet she lived to be an adult.  She lived 10 more years after my first post about Christmas socks.  I know that all those people praying for her and pulling for her had something to do with it.  That support held us up through some very difficult times.  Words can't describe what that support means to me.  I continue to feel that love and support today.


I would like to continue the tradition of wearing Silly Socks in Jessica's memory to show love and support to all CHD kids and adults. 

Join our little group on FACEBOOK: Silly Socks 4 CHD 
  

Saturday, September 01, 2012

photos Jessica's dress and flowers - funeral

A few months before Jessica passed, she requested a white dress with pink roses on it for when she died.  My sister Karen sent us this beautiful white dress and I hand-sewed the pink flowers onto it. The dress is spread out on top of a Harry Potter quilt that one of Jessica's teachers (Barb) made for her. 


Here's a close up of the little pink roses.


One of Jessica's e-pals, Matt (also a CHD survivor), sent her this little angel many years ago.  I pinned it onto the dress as a symbol of his love.  


Below are photos of the beautiful flowers that were sent to Jessica's funeral.


A white butterfly on a pink carnation!





Aunt LaRae and Uncle Lamon sent this floral arrangement to us.  It has a small angel - a cherub now resting from all labors... just like Jessica. LaRae & Lamon have a son named Martin who passed away around 15 years ago.  He was only 17 and had been fighting brain cancer for just over a year.  It means a lot to me that they would send me such beautiful flowers and they also came to the funeral.






Close-up of the little angel.









Another beautiful butterfly!


The flower arrangement below was sent from Matt and his family.  Years ago Matt sent Jessica a journal so she could write about her new character "Mary Potter" who is Harry Potter's twin sister.  Jessica filled that book full of fun stories and went on to write in more journals.  Thank you Matt!  There was also a small heart shaped pillow with a rose on it which didn't get photographed.  It is resting by Jessica's hands forever more.  











Jessica loved flowers.  I'm sure that she is very happy with all the flowers that were sent to her.
Love you my sweet princess.