Monday, November 19, 2012

A pair of glasses

While packing things in my living room, I found several pictures that Jessica traced (which she loved to do!) and one coloring page that she colored.  They all made me smile... but when I saw her glasses and picked them up it was completely different.  These weren't even the last pair that she wore either.  Maybe it's the fact that I rarely saw her beautiful face without her glasses on and the fact that her glasses are here and she isn't.  I had been doing pretty well for a couple of weeks and then suddenly my grief hit me like ton of bricks.  It caught me completely by surprise.  I expect to miss her more around her birthday, angel day and on the holidays but this came on suddenly and without warning.  I let my guard down and that's when it struck.  

Grief is a fickle thing.  It has a life of it's own.  It can rear it's ugly head at any time.   The only thing you can do is take it one day at a time.  There is no timeline for it doesn't go by a calendar.  "Time heals all wounds" is a myth.  Time can help soften the pain but it won't fill that empty space in your heart.  The only thing that will fill that hole is when we are with our loved ones again in heaven.  Until then we must pace ourselves.  We mustn't feel rushed to "get over it".  We shouldn't listen to people who think we are "stuck in our grief".

I received some good advice from my uncle who buried his son 15 years ago.  He said, "Fill your time doing good things."  I love that.  Doing my arts and crafts has been very therapeutic for me but since I started volunteering at the LDS Family History Center I have felt like I have a new purpose in life.  I am serving others in a new way and it does my heart good to do so.  I love being a wife and mother.  I will always be those things.

It's been hard because for 22 years I was a caregiver to a specially-abled, medically fragile child.  It took a lot of energy just to keep her alive and as free from pain as possible.  She required so much emotional support that many nights I felt completely spent when I finally climbed into bed (many times as the sun was coming up).  I do not regret putting my heart and soul into my CHD child and my other 3 children.  I've lived to care for all 4 of them and love each of them with all my heart.  The whole time I was growing up all I ever wanted to be was a wife & mother.  I always wanted to have a lot of little children to play with and care for.   Occasionally the thought of being an empty-nester entered my mind but I would quickly shove it away thinking that I would deal with it when it happened.  I was fortunate that my beautiful girl was a "little girl" her whole life.  She never knew the evils of the world.  She was always innocent and as happy as she could be.  Her world revolved around Barbies, fairy tales, Harry Potter, Lord of the Rings and Pokemon.  The worst thing she could think of that someone could do was smoking.  She knew smoking was bad.  She brought joy to everyone around her and radiated love.  Suddenly all of that magic came to an end.  I wasn't "Jessica's Mom" anymore.  I wasn't a caregiver of a special-needs child anymore either.  I had retired from the hardest - yet best- job in the world.  And I retired in the worst way - by the death of my child.

Monday, November 12, 2012

Grieving - two years later

It's still so hard to believe that my "baby girl" is gone.  I still feel as though she is in her bedroom waiting for me to go attend to her.  The past several years she spent most of her time in her room, on her hospital bed, hanging out, playing her games, watching tv, drawing her sweet drawings and writing her stories.  Of course she didn't stay in her room for too long... she thought she needed to go and find me. Since my husband built me a craft room I've spent a good part of my time in there so Jessica would come and find me.  Every 5 minutes.  LOL  I've been adjusting to not having someone interrupt me every 5 minutes while working on a project.  I knew I would miss her coming in to talk to me and I do.  I cherish the memories of her hanging out with me and us working on cards or other projects together whether it's been in my craft room or on her bedroom.  I cherish the time I had with her.

Jessica and me making a card for Grandma's birthday.

 Jessica working hard on her project.  

Notice her Barbie castle in the background.

I had no idea that it would still be this hard two years after she died.   Oh, what I wouldn't give to have her here to make just one more card with me.   

Friday, October 12, 2012

I sang the song "Because You Loved Me" (by Celin Dion) at a church talent show.  We took the picture below at that event.

 I dedicated the song to Jessica.  It was almost as if this song was written about us.  I was her eyes when she couldn't see, her voice when she couldn't speak.... but she saw the best there was in me and gave me faith because she believed...
  I am everything I am because she loved me.  

I miss you my beautiful angel Jess.  I was so very blessed to have you in my life and to be able to take care of you for so long.  You taught me how to have a voice.  You taught me how to be strong when I was weak.  You taught me how to push forward when I wanted to give up.  You taught me how to look for the good in everyone and every situation.  You taught me to cherish the good times and smile through the bad.  But most of all,

  You taught me how to love as Christ does - to love completely and unconditionally.   

Thank you, my beautiful girl.  Mommy Loves You.

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.  


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.


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.   

Wednesday, July 18, 2012

Everything I Ever Really Need to Know I Learned From Jessica

Everything I Ever Really Need to Know I Learned From Jessica
                                                                                          by Lindsey Rohrbough (my niece)
Most of what I really need to know about how to live, and what to do, and how to be, I learned from my cousin Jessica. Living life wasn’t in the sky diving of things but in the things seen from the eyes of a child.

These are the things I learned: Love everyone. Share laughter. Pokemon can take over the world. Power Rangers will save the world. Disney princesses may have true love but they miss out on so much more. All the pain in the world can’t keep you from trying. A family’s love has no boundaries. No one can tell you, you’re not strong enough. Life isn’t about the things you get but the love you give.

Never take life or anyone for granted. Keep a smile on your face even when things may be tough. Hate no one. Ask others about themselves. Never think yourself as a burden. Keep your loved ones close and happy. Overuse “I love you”.

It’s okay to let go when you can’t hold on anymore.

Remember the love that is seen and felt. Remember the pure white snow in the bed of a truck, taken from a nearby mountain. Remember the simplicity of everything.

Think of what a better world it would be if we all- the whole world had pure unconditional love. Or looked out for each other and shared friendship like Mario and Luigi. Look to the future as not to be the end of the adventure but the beginning of a journey. "

Sunday, May 13, 2012

"Happy" Mother's Day?

I'm having an emotional Mother's Day missing my girl.  I had to leave church early because the tears started flowing and I couldn't make them stop.  My sweet husband and I went to the cemetery and gave Jessica new wind chimes.  Karl pulled a branch down from the nearby tree and tied the old wind chimes to it so they hang right over Jessica's headstone.  We spent some time enjoying a warm Spring day, soft breeze in our faces and hair, thinking about our girl.

I miss her laugh, I miss her smile, her stories and her imagination, and most of all I miss her hugs and kisses.  I cherish the last FULL hug I received from her just the day before she fell so incredibly ill and was bedridden.  Karl and I had found out from the GI doctor that she was in starvation mode (just a couple of days prior) and it was just a matter of time until she would leave us.  Jess and I were standing in the doorway of the kitchen and she came up to me and leaned on me and gave me a looooong hug.  I think she knew.  I think she needed that long, full-body hug just as much as I did.  I remember thinking, I need to cherish this because it could be the last FULL hug I ever get from her - and it was.  I felt her head on my shoulder and her hair on my cheek.  Her arms wrapped around me as she leaned on me for support.  She needed my support physically and emotionally and I'm so glad that I could give that to her.  Yes, I have some regrets but I did the best that I could.  I may have missed out on a lot of fun activities while I stayed at home caring for a very ill child for 22 years but I knew I was doing everything I could to care for my very precious children.  I'm so thankful that I was able to be a stay-at-home mom not only for Jess but for my sons as well.  Jessica wasn't any ordinary child - she was extraordinary and she needed far more than any other child... at the same time she taught me more than anybody or anything could ever teach me.  So I worked hard and made the sacrifices that I needed to in order to care for this extraordinary child and my other extraordinary children because I knew that's what God wanted me to do.  My brother, Brian Taylor asked me, "How many other people can say that?  How many people can actually say that they've spent the last 22 years doing what God wanted them to do?"  Thank you for that, Brian.  I still want to do what the Lord wants me to do so I'm trying to find my way, setting new goals and reaching out to others.  But today I miss my girl.  I'm sure I'll feel a little better tomorrow but sometimes you have to feel bad in order to feel better.  Thank you all for your thoughts and prayers.  I love all my family - those who are blood relatives and those who chose to be a dear part of my life.  <3

So HAPPY Mother's Day because I was fortunate enough to have had the most amazing daughter to care for here on earth for 22 years and for all eternity.  And HAPPY Mother's Day because I am fortunate enough to still have all 3 of my sons in my life and a sweet daughter-in-law as well.  How could I ever be so lucky?