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.

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: 


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 

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?

Wednesday, December 07, 2011

A Mom's Response to her child's question, Are you Santa?

Jessica believed in Santa all her life.  You could see the excitement and joy in her eyes when she spoke of Christmas and Santa.  Below is a Christmas picture that I came across of Jessica (when she was a little girl) with Santa.

She always looked forward to her visits with Santa - that is once she realized he was a nice guy.  hehe!  She always told me that what she liked most about Christmas... even more than Santa... was spending time with family.  We love getting together with family & friends and spreading the Christmas spirit.  We miss Jessica every time we get together with family but we feel her presence somehow.  She is with us and always will be.  We are striving to become an eternal family.  

In the Spirit of Christmas, I found this posted on a friend's blog.  I love the answer and will be sharing it with my family this Christmas Season.  Enjoy:
Over on Pinterest I came across this letter a Mom wrote to her child after a persistent question did not go away. You know the one, we've all asked it or heard it!
Are YOU Santa? Is Santa for real?
Here is the letter. I've adapted it somewhat for our family.
Dear _______,
Thank you for your letter. You asked a very good question: "Are you Santa?"
I know you've wanted the answer to this question for a while, and I've had to give it careful thought to know just what to say.
The answer is no. I am not Santa. There is no one Santa. I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my Mom did for me, and the same way her Mom did for her. (Optional- and yes, Daddy helps, too. Of course add whoever helps do this.)
I imagine you will someday do this for your children, and I know you will love seeing them running to the tree on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.
This won't make you Santa, though. Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He helps teach children how to believe in something they can't see or touch.
It's a big job, and it's an important one. But the power to believe is based in the love that only comes from Jesus. And throughout your life, you will need HIS love to believe in yourself, in your friends, in your talents and in your family. Your strength from Jesus helps to believe in things you can't measure or even hold in your hand. HIS grace will light your life from the inside out, even during its darkest, coldest moments.
So, Santa is just another teacher, and I have been his student. Now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he's helped fill with joy and those who want to bring happiness to their loved ones.
With full hearts, people like me (optional- add, and who else helps too) take our turns helping Santa do a job that would otherwise be impossible.
So, no. I am not Santa. Santa is part of love and magic and hope and happiness that our life can bring from the greatest gift of all, Jesus Christ. And we are all invited to be on HIS team! Merry Christmas!
I Love you and I always will.
Signed, _____________

I hope you enjoyed this as much as I did.  I hope you and your loved ones have a safe and wonderful Christmas season!

Friday, November 04, 2011

Beauty From My Pain

A dear friend of mine posted the following video to my facebook wall.  I love this song so much I decided to share it here.

This song describes how the pain from losing a loved one will eventually turn to beauty.  The pain we feel after a loved one dies is so very deep because of how much we loved that person.  The beauty is that we are so blessed to have known that person.  We can hold the person in our hearts and cherish the memories until we see our loved one again.

I hope you enjoy it.