Tuesday, April 22, 2014

Because of Him

I have decided that it's time to blog again.  My life has forever changed since the death of my beautiful daughter, Jessica. I have changed.  My grief has changed again and again.  A lot has happened since I last blogged.  My middle son, Brandon, went on a mission to Oregon last year.  It has been such a blessing for him and for us.  He is doing the Lord's work and is really enjoying his mission.  I will post photos that he has sent soon but for today I wanted to post a couple of videos about Easter and the journey that I am on right now.

Easter was two days ago and the sacrifices that our Savior made for us all have been in the front of my mind.  My aunt LaRae died on April 7th, one day after General Conference.  I love her and her family so much!  LaRae is my mom's younger sister.  LaRae and Lamon have lived 2 hours away for many years.  LaRae has a son named Todd who is Jessica's age.  It was awesome to be pregnant at the same time as my aunt.  In many ways I feel as though Todd is like one of my own sons.  He is good friends with all my three of my sons and LaRae would bring him to family functions here when my mom would come to town.  It was good to see Todd and offer support to him, his siblings and his dad, Lamon at the funeral last week.  LaRae fought a valiant fight against cancer and as her health declined it brought back memories to me of when my own daughter was dying.  During this time a dear friend's daughter is also dying.  Jessi (my friend Jen's daughter) was born with CHD, hydrocephalus, down syndrome, and more.  Jessi has been battling leukemia for the last couple of years and the chemo has damaged her already compromised heart.  Jessi is in the hospital and doesn't have much time left.  Going through this with her mom, Jen, has also been very hard for me.  

With all this disease and death so near to my heart I have had to fight flashbacks of when Jessica died.  It's something that I know I will have to deal with since I have PTSD.  When I said good bye to my dear aunt, it felt like I said good bye to my daughter all over again.  I sobbed the whole two hour trip home.  I was ready for Jessica to come back now.  I was exhausted physically and emotionally.  Three days later, on Saturday, all my family got together at my brother's house to celebrate Easter.  I had gotten some rest by then and was feeling much better.  We had a wonderful time at my brother Stuart's house and I could feel my family's love.  I knew I could push forward again.

My husband and I went to church the next day and I went home feeling the Savior's love even more.  The missionaries come to our house every Sunday and I had found a couple of videos to share with Karl, Austin and the Elders.  We were all touched by the Spirit of the Lord and I knew without a doubt that the Savior suffered and died for our sins.  He rose from the dead so that we can all live again.  I will be with my daughter, my aunt, my nephew, my cousin, my grandparents and ALL those loved ones again one day.  I have the opportunity to repent so that I can be with them for all eternity.  Knowing this brings hope to my weary heart.   

The following video is John the Beloved's witness of Jesus Christ's ministry, His suffering in the garden of Gethsemane, crucifixion and resurrection.  It is hard to see even just a portion of what Christ went through in order to pay for our sins and to die the way he did.  The brutality of it all can be overwhelming but to see Him after He was resurrected is an incredible feeling.  I hope you feel the love of our Savior while watching this video.  Sometimes I can't believe that He went through all that for ME!  He did it for you, too.   

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, June 03, 2012

Happy Birthday to my sweet angel, Miss Jess

Happy Birthday to my sweet angel, Jessica. 24 years ago my whole world changed as we entered into the world of CHD. I love and appreciate everyone who supported and continues to support us.  Someday I may feel up to posting more on here but for now, Jessica knows how much I still love her and think about her daily.
Here are some photos from a webpage I made back in 2000.  These are the 'early years'.  You can visit the site here.


 Jessica was born with polydactaly (2 extra fingers and 1 extra toe).
Jessica was about 8 months old in this photo.
You can see the extra fingers here.

Jessica had surgery to remove her extra fingers and toes.

Jessica and her brother, Justen...1991
Jessica used mostly sign language at this age due to a stroke she suffered during heart surgery.
The sign language facilitated the speech and language skills. She did learn how to talk.

Jessica at Project ABLE, a special ed. preschool program through the public schools.

I made Easter dresses that match!

Jessica on her way to Dietz Elementry school. Her last year in grade school!

Jessica swinging 1999

Jessica 2000
Jessica gets to sit in the search and rescue helicopter at a local fair and demonstration.

Jessica and Dad

A profesional photographer from LA came to take pictures of Jessica
and other children involved at the "Tu Nidito" support group.

Jessica and Mom ~ July 2001

Sergio Lopez took this picture and many others of Jessica and our family on Aug 19, 2005