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.   

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.

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.   

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.

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    

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.   

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. "

"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?

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!

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.  

Marcus's Butterfly

Three years ago my nephew, Marcus John Russell, was laid to rest following his brave battle against brain cancer.  Jessica was recovering from surgery on her leg and had an open wound... I couldn't leave her so we held our own memorial here at our house.  Just as we were getting ready to start our memorial a butterfly got into the house and flew to the light over our table in our family room.  It fluttered around the light and then fell onto the table. 

 It opened it's wings and allowed us to get a good look at it.  Jessica was a little nervous but we were all impressed that a butterfly flew into our house after dark!  We've never had a butterfly come into our house and aren't they supposed to sleep at night?

I grabbed my camera and took pictures. Karl took the envelope with it's little passenger outside and the butterfly flew away. We had our memorial and Jessica said, "Marcus sent us that butterfly, huh Mommy?" She kept telling me that Marcus sent it. 

Karl with Austin and Brandon

During our memorial some of us wrote notes to Marcus and then we went outside. Karl built a fire and we put the messages in it so the flames could symbolically take the messages to Marcus in heaven.

Jessica and Austin

We discussed many things that we loved about Marcus and how we would miss him.  We also talked about heaven and how there is no pain there and that Marcus can see and walk again.  We also talked about who was there with Marcus.

 Austin comforting Jessica and Dad coming to help 

 flames symbolically taking our love and messages to Marcus

Jessica and Austin

As we were getting ready to go back inside another butterfly came and fluttered around the light on our back patio. I already had my camera so I flashed some quick pictures. At first we thought it was the same butterfly as before but looking at the photos I can see that it's a different one. It could even be an orange moth but the first one was definitely a butterfly.

Almost two years later, as Jess lay on her death bed she promised to send me butterflies from heaven like Marcus did... and she has!

I love and miss my girl and my nephew, Marcus Russell. He did so much to comfort Jessica and help her move from this life to the next. I'll be eternally grateful to him. ♥

Grieving is Hard Work

Those who have never buried their child cannot know that pain... it is different than having another family member or loved one die.  I carried my girl in my womb for 9 months and had morning sickness that whole time. I gave birth to my Jessica, cared for her through all her special needs, many complicated medical problems, did therapy (OT, PT and speech), gave up so many of my own needs for hers and fought for every little thing for her for 22 years.  My heart yearns to care for her again.  To brush the hair out of her eyes, touch her cheek and calm her fears.  I spent so many sleepless nights calming her down, helping her see the good in her life and helping ease her physical pain.  So many little things I did for her that nobody even knew about because she was embarrassed that she needed my help with those personal things.  We had a bedtime routine that increased over time to where it took me hours to get her calm, tummy full and pain under control so that she could finally sleep.  I used to pop popcorn EVERY NIGHT and we would eat it together while watching TV in her room.  I can't eat popcorn anymore, especially the regular butter kind that she and I would eat.  There are still popcicles in our freezer that we bought for her last year hoping that she would be able to eat them but no, she couldn't even keep that down.

Most days I'm OK but that might be that I'm trying to ignore the closed bedroom door.  A small piece of me is hoping ... or wishing... that all I would have to do is open it and I would be able to rush in and hold my sweet girl.  I miss her so much... I think my heart will break into a million pieces.  I saw her heart give out.  Her heart fought a long hard battle and survived much longer than anyone ever expected, ... but not long enough.  It would never be long enough.  After she took her last breath and her heart's fluttering stopped we sat there looking ... and watching... are we SURE it was done?  Could it start beating again?  She had cheated death so many times before, why couldn't she do it just one more time?  We saw so many miracles during her lifetime why couldn't we have just one more?  The miracle that came was for her, not for me.  The real miracle is that she is no longer suffering and will never feel pain again!  She suffered for so very long.  I grieve over the pain she went through for so long and how I fought so hard to get someone to listen to me and help me ease her pain.  I couldn't get anyone to understand how incredibly ill she really was.  But I knew.  I knew her whole GI system was shutting down.  I knew her heart could only take so much and I knew her spirit was growing tired.  I knew I needed to cherish every kiss, every hug and every "I love you Mommy".

Eleven months ago I told my precious girl to "Go to the light", that it was time to go to heaven.  It was the hardest thing I've ever had to do.  I had fought for her to LIVE with all my might and strength for 22 years and 4 months... but at 3:27 am on October 4th, 2010, I told her to "Go!  You will be great!  You will be beautiful and happy and free!" just when I wanted to cling to her and cry out, "Don't leave me!!!!"  One quick look, one huge tear, one huge frown and one last breath and she was gone.  She was finally free of the body that held her back in so many ways... that kept her from doing all the normal things that most kids do... kept her from having the biggest dream of all... to get married and have a family just like Mommy and Daddy.

I know her dreams will come true someday.  It's just soooo hard to wait.  Last year she told me so many times how much she wanted to get married and have a family - she didn't want to die yet.  I told her about what life will be like when she is resurrected... she will no longer need her oxygen, no tubing to trip over and no oxygen tanks to take with her... she wouldn't need a wheelchair either, she would be able to run and play with her children and not sit in the wheelchair and watch.  She wouldn't turn blue and get short of breath... she would breathe freely and be able to do ANYTHING that she wanted to do.  Her healthy body would be able to have as many babies as she wanted and she would be able to take care of them herself.  She would have a good husband to love and who would be a good father to her children just like her Daddy.  She would get married and have her family - she would just have to wait a little longer.

Someone said to me yesterday, "You'll see her again in heaven".  Callus.  That doesn't help me NOW.  It could be 40+ years until I see her again... I don't think she (the commentator) would want to wait that long to see her little girl.  Another comment from someone else when I replied, "It's just such a long wait".... "if you think about it in her perspective it's not that long at all."  I didn't even respond to that.  Please.  If you want to comfort me don't brush my anguish aside.  If you can't respond in a caring manner then don't respond at all.  I tried not to let those comments affect me and I went about doing other things.  I don't always feel this bad but I HAVE TO FEEL IT.  I can't just brush it aside as if I never even had a daughter.  I did have a daughter - I STILL have a daughter, I just can't see her or touch her right now.

This weekend was my in-law's 50th anniversary celebration.  Each of their 4 children had a display table for their families to set up, anything we wanted to as a representation of our families.  We had pictures and a digital photo frame.  My sis-in-law recommended that I bring the photo display board that I had set up at Jessica's funeral.  I brought it and quickly added a few photos.  We had it set up next to our little table.  I saw quite a few people looking over the photos - I had her birth date and death dates on there so I'm sure everyone knew she had passed on.  I met some people I didn't know and there were quite a few people asking about my precious angel.  It was such a huge hole not having her there.  What made it worse is that Justen and Ravyn weren't able to make it so 1/2 of my children weren't there.  It was very nice to see the in-laws, some of whom I haven't seen in quite awhile.  A couple of the young nieces remind Karl and I of our little girl - who was a "little girl" her whole life.  We had a lot of emotions that night at the party and I sobbed on the ride home.

Yesterday (technically it was yesterday but I still haven't gone to bed so it's "today" for me - lol) was one of those dates.  It was exactly a year ago that we celebrated my birthday 16 days early so that Jessica wouldn't feel the need to linger on and suffer needlessly in order to be here for my birthday.

She was so thin and weak... I couldn't get behind her to hold her up without causing her too much pain.  It was a very difficult birthday for me... but little did I know that she would not only be here for my actual birthday (September 20) but she survived until Oct 4th, 2010.  Exactly eleven months ago.  

I can't believe that it's been 11 months since I last held my girl.  It seems like AGES and I'm so tired... I can't even begin to think of living my life without my girl for YEARS.  It's such hard work to grieve.  Even when you think you are doing ok, it's still there.  The void.  The yearning to care for your own child is still there.  Wishing to hear her voice again, hear her laugh and see her smile... it's even there when I sleep.  I dreamed that Brandon put one of our kittens outside, shut the door and walked away.  I was frantically looking for the kitten who I just knew was out there, afraid and alone.  I realized that my dream wasn't about the kitten, it was about my subconscious worrying that Jessica is alone and afraid.  She always needed me to be nearby.  If I left to go somewhere she would call me every 5 minutes asking when I would return.  Most of the time I worried about her welfare while I was gone... was she breathing ok?  Was she calm and happy or was she worried and scared?  In my heart I know that she is in a place where the cares of the world are laid to rest.  She is with people who love her and she is happy.  She is able to do anything she wants to do and I believe she is able to visit me whenever she needs to.  But my subconsciousness doesn't know this.  It worries because I can't see her, I can't ask her how she is doing and I can't hug her worries away.  I keep thinking that I held her up and carried her for 22 years... now it's her turn to help me from the other side of the veil.  I've worried about how I would grieve over my daughter's death for so many years... and now it's a reality.  I can't just wake up and go to her room and hold her.  She really is gone this time.   

I'm not sure if anyone will read this or not but I think I needed to write it for my own good.  I thought I knew what grieving would be like but it is different than I expected in some ways.  Each day is a new day... not one that I readily get up and am excited about.  It's like I get up and put on a 100 pound sack on my shoulders.  I don't want it but it's there.  The pain, the sorrow, the loss... it's actually even there when I'm asleep.  I've heard that you become stronger to carry that hole in your heart after you've buried a child but it never goes away.

Earlier in the evening I decided to write down a little of what I was feeling and several hours later (taking several breaks from writing) I think I'm done writing for the night.  Sorry if I rambled on and went on different tangents.  I've had a few people tell me that they wish I would go back to blogging since they hate facebook. I think that the main purpose for me to write is to get it out and also, if anyone should happen to read it, maybe they will become more aware of what a mother feels after losing a child.  Maybe they can avoid some of the pitfalls in the unwelcome remarks and maybe, they will just offer a hug or an ,"I'm so sorry" instead of trying to brush off the grieving mother's feelings.

Good Night blogland.

Butterfly Girl

I found this image online and it made me think of my beautiful girl, Miss Jess, in heaven who can finally dance and fly with the butterflies.  

I had a rough day today, you see, one year ago we found out from the GI doctor that our daughter was indeed in starvation mode... her GI system was shutting down due to her terminal GI illness. We didn't know that we only had 2 months left with our angel on earth. I keep having flashbacks of that day and the months following... so many difficult moments... but precious ones as well. Just wish I could kiss her cheek and hear her telling me how much she loves me one more time.

Of course one more kiss and hug would leave me wanting one more and one more.  At least I took the opportunity to get as many hugs and kisses and "I love you's" as I could while she was still here.  We had many private moments and talks which I cherish.  I hope that the good memories will help me going while dealing with the difficult ones as they come.

Last weekend we celebrated my parent's 50th wedding anniversary.  It was a wonderful event.  I hope to have photos back from my dear friend and photographer soon.  I missed my girl so very much but knew that she would have been way to sick to even attend the event had she still been alive.  I'm sure that she and her cousin, Marcus, were there enjoying the rest of my parent's children, grandchildren and great-grandchildren.  My parents both had siblings who were able to make it to their celebration too and it was so wonderful to see them again.  

My husband reminded me that I shouldn't forget to include my cousin, Martin, who died about 14 yrs ago from a brain tumor when I speak of Jessica and Marcus - and he's right.  I didn't know Martin very well since he was much younger than myself but he touched our lives in a way only he could.  When he was fighting his cancer we drove to the Phoenix area (about 2 1/2 hrs from our home) to visit him and my aunt and uncle to offer them support.  It meant a lot to them that we would go and be there with them.. . and it blessed our lives to be able to offer our love and support to them as well.  Caring for a medically fragile child for so many years has offered Karl and I an opportunity to be so much more compassionate towards anyone dealing with an illness, disability or special needs.  I have found that it's one thing that helps lift my spirits - offering support and love to others who are either caring for a loved one with special needs/medical issues or who are grieving the loss of a loved one.  

I hope to be back soon with photos of our amazing family celebration honoring my parent's 50th anniversary.  I'm so thankful for them and their commitment to the gospel and to each other.