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.  

Happy Birthday to my sweet angel Miss Jess

Happy Birthday to my sweet angel, Jessica. 23 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 web page I made back in 2000.  These are the 'early years'.  You can visit the site here.   I am adding a little extra explanation with these photos than what are on the angelfire website and have combined most of her story that is on this webpage.  Enjoy! 

Jessica shortly after birth.  Alert and ready to take on the world!

When Jessica was 2 weeks old she was diagnosed with multiple  heart defects. Some of these are: pulmonary artesia, VSD,  pulmonary stenosis and pulmonary branch stenosis.  click here to learn more about these heart defects  Jessica was in congestive heart failure and was hospitalized. Jessica spent much of her life in and out of the  hospital. Jessica was struggling to gain weight and every little cold or  illness would send her into the hospital. She was very "blue" and would cough and choke a lot. Jessica was diagnosed with GE Reflux and put on  medication for that. Finally the pediatric cardiologists felt that she needed surgery when she was 5 months old, even though she only weighed 10lbs. Jessica suffered a stroke with her first heart surgery and her right side was weak. The stroke was in the speech area of the brain and by 18 months of age, it was obvious that she was having extreme difficulty with speech and was trying desperately to communicate. Our home-bound teacher recommended sign language. We worked with the teacher and speech pathologist and only 6 months later Jessica could sign over 80 words! Slowly the speech came....being facilitated by the sign language. Jessica was also delayed in other areas due to the stroke. She didn't sit up until she was about a year old or walk until she was two. Her heart and body were weak, but her spirit was not! She was determined! 

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.  Here she is with her older brother, Justen

Playing peek-a-boo!

Jessica and her brother, Justen...1991
Jessica used mostly sign language at this age due to a stroke she suffered during her first heart surgery when she was 5 months old. The sign language facilitated the speech and language skills. She did learn how to talk... but she didn't learn how to STOP talking.  haha!  She once said about her talking all the time, "It's what I do best!"  She did a lot of things "best".

At age 3 when Jessica's shunt was to be replaced...the shunt was
  accidentally cut and she hemorrhaged out and went 8 min. with out receiving oxygen to her brain and suffered a 2nd, massive stroke and bled for days.
She also caught an infection in her blood and 4 days after surgery we
were called to the hospital early in the morning to spend her last hours
with her. She was bleeding, having seizures and with the infection surly
would die. God blessed us immensely and she stopped bleeding on her own
after losing 1/3 of her blood volume in only 4 hours. She was in a
medically induced coma for a couple of days in order to completely stop
the bleeding. 10 days after surgery she finally came off the ventilator.
To our dismay she was blind and her left side was paralized. We thought
to ourselves, what have we done! After several days of waiting, tests,
and many prayers, Jessica received her eyesight enough to be able to see
her mommy and daddy. She was finally calm and could take comfort in
them. She finally came home from the hospital a couple of weeks later a
very sick little girl who had to learn to sit up, stand, walk and talk
all over again. But this awesome, strong-willed child showed everyone
what faith and hard work can do. She did learn to do all those things
again. I always said that her motto is: "I'm not going to let a little
thing like heart surgery and a stroke get me down!" 

Here she is with Santa.  She was also afraid of him at that age but sat on his lap for the picture anyway... she began to realize that he wasn't such a bad guy after all.  hehe 

Pictured below: Jessica recovering post-surgery.  She had to have her arms strapped down or she would pull out her tubes and wires.  We covered her incision and 2 chest tubes so her brother, Justen, wouldn't freak out when he saw her.  He was always so concerned about his sister and hated to see her "owies".  I only have two photos of her in ICU - none with her intubated - because I knew I would never forget what she went through.  A part of me wishes that I would have taken those photos so others would see how strong she was and what she and other CHD children go through.  She looks so sad... she was very depressed until she went home.  She perked up when she was able to be at home and be with her brother.  Jess had to re-learn how to walk and talk..and even had to relearn how to sit up.  We had to start at square one all over again.

 

Jessica after 3rd heart surgery, 1993 ~ Dr. Donnerstein & Dr. Goldberg with Jessica.

Jessica was 5 years old when she needed her 3rd heart surgery.  Jessica recovered much better this time and 7 months later had surgery #4. The surgeon came out of surgery very discouraged and told us that "there was nothing more that they could do". Jessica's pulmonary arteries had not been growing. Within a few months of that surgery Jessica was becoming incredibly "blue" and was needing oxygen more and more. Finally a cath showed that the conduit which had been placed between her right ventricle and pulmonary artery was allowing a lot of blood to flow away from her lungs and into the heart. Surgery was needed again to close off the conduit to give Jessica more time and improve her quality of life. Jessica did much better this surgery, largely because the incision was only a few inches long. Jessica came home 5 days after surgery!  (My 3rd child, Brandon, was only 2 months old when Jess had her 3rd heart surgery... and when Jess had her 5th heart surgery I was 6 months pregnant with my last child, Austin.  After Jessica's 4th heart surgery and we knew she would not survive her CHD we thought she would never have another heart surgery and we decided it would be best for us to not have another child - how could I care for a dying child while being on bed-rest?  - I was on bed-rest with my pregnancy with Brandon - but I've learned to not tell God "I'll never do --- "  Because Jess had her last surgery when I was having my last child.  It was a good thing she did so well because once we got her home and she was doing well I developed toxemia and was put on bed rest.  I still don't know how I did it - but I couldn't have done it without the Lord's help.) 

Pictured below: Jessica at Project ABLE, a special ed preschool program through the public schools for children ages 3 - 5.  She sure blossomed through this program.  By the way, she was terrified of balloons and those were real balloons in the photo below.  She cried a little but I was able to get her to calm down for the photo.  Just one of the million times she was brave.

I made Easter dresses that match!  I don't remember the exact year that this picture was taken but Jess must have been about 6 yrs old at the time.  She loved that dress and hat.  This was before she had to wear oxygen 24/7.  She only had to have it when she had "tet spells"... where she would over-exert herself and get extremely short of breath and "blue".

Jessica on her way to Dietz Elementary school. Her last year in grade school!  Jessica's heart defects prevented her from walking around very much without having a 'tet spell' (explained above) so she needed a motorized wheelchair. By this time she needed the oxygen constantly.  She was such a trooper!  She learned how to drive her wheelchair very quickly and enjoyed the freedom it gave her.

Jessica swinging 1999.  Yes, she would swing with her oxygen on and I would have to make sure that she didn't get it caught onto anything.  That girl never learned to watch out where her oxygen was.  If she wanted to go somewhere - she would just go.  Many times the oxygen would get caught and come off.  She hated going back to unhook it so she oftentimes just kept going and I (or her brothers) would have to get it for her.  I would tease her that most of my appliances stop working when they come unplugged so why is she still going?  She would answer, "Oh Mom!" in a joking tone.  When Karl would tease her she would say, "Daddy!" in the same tone.

 

Jessica gets to sit in the search and rescue helicopter at a local fair and demonstration.  She was a little nervous but she did it!  We didn't get to ride in it but she was so proud of herself that she was able to get inside.  They showed us the medical equipment that they carry in the helicopter - sadly we knew what most of it was due to our experiences at the hospital.  She had already had all of her 5 heart surgeries by that time.

 Jessica and Dad... She sure loves her Daddy!

 September 2000 - I made that dress for her to wear.  She always liked wearing dresses for school photos.  We weren't able to buy them every year but I'm so glad I have this one.  It seems that they had Jess take off her oxygen for the school photos... trust me, she was needing it more and more so it's gotta be nearby.  

  In 2001 professional photographer from LA came to take pictures of Jessica and other children involved at the "Tu Nidito" support group. 

 Jessica and Mom

School photo - Spring 2003

 Sergio Lopez took the following pictures and many others of Jessica and our family on Aug 19, 2004.  Jessica had been admitted into hospice due to daily lung bleeds.  An anonymous family from our CHD online support group through TCHIN paid to have family photos taken.  I'm so glad we have these great photos!   

Fortunately our hospice nurse convinced the pulmonary doctor to start her on morphine therapy to prevent the lung bleeds... and it worked!  A year later Jess was released from hospice due to not having lung bleeds in several months! More photos from 2004 Jess and her parents, Nancy and Karl 

Jessica and brothers (oldest to youngest) Justen, Brandon and Austin

Our family

I'll try to post more to her life story later. Thank you so much for visiting and I hope you will leave a little comment for Jessica's birthday today.

Families Can Be Together Forever

I learned this song as a child and have always loved it. It helps me to remember that I will see my sweet Jessica again and that we can live together forever. I haven't posted since her passing - 5 months ago today.  I just haven't felt emotionally up to posting here but I have posted a lot on facebook. I like that I can post just a few sentences a day on fb and be done.  I'll try to post more here because I like that I can label my posts and easily look them up later.  The past few days I've been looking over my "Jessica" posts to find the fun events in her life.  She had so much pain and suffering that she endured... those are the thoughts that tend to flood my mind... so I am looking for the joyful moments and the smile on her sweet face.  These are the moments that I NEED to remember.  She will NEVER have to endure pain again!  I'm so very proud of her. 

Our family has been going through a lot as my youngest son is having a lot of medical problems. We are seeking treatments with several doctors, therapists and our bishop. He has received several priesthood blessings and I know that he will be healed. Better days are ahead. We just have to keep hoping, praying and working towards that goal.  We also won't always hurt this much at the thought of her being in heaven.  It's hard - oh, so hard - to think of how long it will be until we see her again - but this journey will be worth it!