Ipod Hysteria! Sand Bucket List #8 Celebrated

I can't even come close to describing this moment so you just have to see it for yourself.  A huge thank you to Cathy Worrell and friends who sent this deeply beloved gift to Meisyn.

http://www.youtube.com/watch?v=2wEwWqnBbSg&feature=youtu.be

Meisyn's Purple Posse,,,Family Pictures

May 29, 2013
http://kirstenlynnphotography.blogspot.com/

Shayna's little FAVORITE friend

Today Meisyn was SO thrilled that it was day to wear her favorite color, PURPLE just for her!! It was SO awesome to see how many people wore purple in Meisyn's honor at her school. She sure has a LOT of people who just absolutely LOVE and ADORE her! But who doesn't right? ;) We also had one PURPLE-licious family photo shoot and me and ALL the siblings and the parents got their very own picture taken with Meisyn. When it was my turn, I've never seen someones face just fill with so much excitement just to take a picture with me.  She not only puts a smile on my face, but she has taught me so much and has shown me what this life really does have to offer. I will forever be grateful for Meisyn and for her teaching me how valuable peanut M&M's and a purple sparkly one dollar bracelet are.

I LOVE YOU FOREVER PRINCESS MEISYN!! <3 <3

Love Always,
Shayna 

Meisyn Comforts Makayla

 Shared from Big Sister Makayla's Facebook status tonight.  The strength of the baby sister to the elder, sob.  Today is PURPLE DAY in Meisyn's honor.  Her whole school has been invited to wear purple.  We will have our family pictures taken tonight...in purple of course...per Meisyn's request.

We have not given up on the LIFE of our baby girl but we feel the ever hastening direction to "Hurry.  Prepare. Make Memories.  Do Not Delay."

Makayla gets married on Saturday, June 8, 2013.  Meisyn is the Maid of Honor.

 

"As excited I am about the wedding coming up, my heart is breaking. The closer it gets, my sweet sister gets weaker.

Yesterday Meisyn and I had conversation about people wearing purple! She asked if i was wearing purple, I cried and said " of course" While i was crying, i can see that she was trying to hold her tears. She hugged me and told me that she is excited to walk and meet heavenly fath...er. I cried even more! I couldn't talk. I sat there crying she held my hand out and said " It's okay, I will be watching you with heavenly father" I told her to come play in my dreams" and wanted to race, dance play soccer" We both laughed. As i was helping her down from my bed she said" When you dream, I will visit you a lot AND say BOO" LOL

I was scared for while BUT after listening and letting her comfort me. I'm not scared because she said " She will be walking and running and meet heavenly father" :)))))))))))))

Cheers to you SIS!!!!!!  Love Makayla"

FAMILY, FOREVER, FOR ALWAYS, NO MATTER WHAT

 

GPA Purple For Meisyn Day :)

We are part of an amazing school community!  This was sent home with all the children.  Its PURPLE DAY for Meisyn tomorrow.  How very, very cool.  The school year ends on Thursday.  We will miss our school friends.

PURPLE UPDATES 5/29/2013

 

"THE THINKER" with SMA

You have all likely seen the statue of The Thinker, chin in hands, absorbed in thought.  This is the same pose with Spinal Muscular Atrophy (SMA).

“Sometimes I sits and thinks, and sometimes I just sits...” Winnie The Pooh
― A.A. Milne

Nearly Meisyn's In Memorium? Trip to the ER

People discreetly try to ask, "How much time does Meisyn have?"  I myself want to know, at the same time I dread nothing more than knowing.   The answer is that nobody knows.  We live minute to minute and today she stopped breathing and it could have been the last day we had with her.

What we do know is that she has a rare and degenerative form of spinal muscular atrophy/muscular dystrophy.  She will continue to weaken.  She will have periods where she crashes.  This is where she has a physical crisis and never returns to the strength she had before.  We could have months or years left with Meisyn but her nerves with continue to degenerate and her muscles atrophy, and eventually her heart muscle will die or she will go into respiratory failure.  We will be faced with watching her waste away a nerve at a time.

Or, she can be taken from us in minutes or hours.  She is always a 12 hour dehydrated state away from muscle breakdown and organ failure.  Today was a dress rehearsal for emergency while my husband and I left for an hour to attend church.

We returned home to learn that Meisyn was in the ER.  She wasn't breathing.  PANIC.  ABSOLUTE PANIC.  My deepest thank you to big sister Shayna and dear friend Ginger who got her to the hospital.  Meisyn did not need CPR but I think Shayna just about did.  It scared her beyond measure but she still kept her head.

Meisyn had been lying on the floor and Ammon tried to put the recliner foot rest down and Meisyn's head got caught.  She felt dizzy and started choking.  Then she stopped breathing.  What followed was likely a seizure.  She began flailing and pulling frantically at her clothes.  She was still in this state when she arrived at the Emergency Room.  Thankfully, she is now okay.  X-rays showed that she has a swelling in her throat but whether that is from today or possible croupe is not clear.  She begrudingly had a steroid shot and then even asked Ginger if she could go play at her house so the order of the world is somewhat back on its axis.

The drive home requires us to pass the cemetary.  Meisyn noticed all the pretty flowers.  She said, "Mama, I want to go there and get all the pretty flowers too."  Pierce my heart and soul.  I pulled in to the grave yard and we drove to an area where my friend's daughter Megan lies in repose.  I stopped the car and Meisyn and I talked frankly about why the flowers are there.  Why there are names on the stones.  What lies under those stones.  I shared that people come to visit the people who have died and who they miss.  She earnestly replied, "Mama they aren't here.  They are with Jesus in their new sparkly bodies.  THEY ARE NOT HERE."

Oh Meis, how can I do this?  How can I let you leave before me?  How can you no longer be here with us and we survive?

Sand Bucket List # 9 Pet a Hamster???

Meisyn is a girl of gratitude, always concious of her blessings. 

Today I found a picture folded up and lying near her art supplies.  She drew herself in purple. But of course.  She has her sweet dog Ivy at her side.  She is playing with her new Baby Belle in the thought bubble.  Hmm...all good.  But, is that a HAMSTER she is holding?  Oh please no.  I can summon the energy for just about every other wish on her Sand Bucket List but the hamster.  NOOOOO!  Me thinks I am going to ultimately give in on this battle.  I was fine with her Pet a Hamster wish.  We could go to the pet shop and do that.  But I'm getting the message in her limited English that she meant, "get a pet hamster".

We had a hamster once.  It got loose and ended up stuck INSIDE our couch.  We had to cut the couch to get it out.  Shiver...I vowed never again.  But I should know that I should NEVER say NEVER.  I curse myself every time with that.

Positvely Purple"isious" and Perfect Surprise Princess Party

It's reigning and raining princesses....and one Prince Eric! A royal thank you to Ginger Spackman Healy and Kirsten Shurtz Murdoch and ALL THE PRINCESSES who orgnaized and attended a suprise party for Meisyn. Sand Bucket List #7 has been celebrated!! I heard many, "I AM SO HAPPY" squeals and Meisyn said it was the "Super Best Day Ever"!

 Thank you all your majesties...and one handsome Prince.

 Meisyn was mesmerized by Belle.  "I know your story!!" she shared with her.  When Belle asked to hear it, Meisyn ultimately had to be honest, "I don't remember" she admitted.

 Ariel was a great dancer.  She asked, "Do you know The Little Mermaid movie?  I was IN IT!"  This elicited all kinds of oohs and aahs from the wee princesses.

Both favorite princesses on either side....almost too much joy!

 Snow White and Cinderella shared their beautiful smiles too.

The most magnificent cupcakes E.V.E.R.  Even Jaeya who doesn't like cake couldn't resist.

One immensely ecstatic princess.

Baby Belle Arrives By Mail

Meisyn asks often, "What did I look like when baby?".  Today she thinks she knows and it tickles her heart to no end.

Someone anonymous sent her a big box with her name on it.

Inside was a sparkly oval golden box...oh the anticipation!

A precious baby princess doll was inside.  Meisyn squealed and she hugged the doll closely and exclaimed, "This baby look like me?  Looka like Meisyn baby!"  Sure enough, it does.

Meisyn has named her Mini Me "Baby Belle".  She came with four outfits, crowns, and the most delightful head of thick SHORT baby hair...just like Meisyn had her whole life as a child in the orphanage.  THANK YOU THANK YOU THANK YOU to the sender of this very adored piece of childhood that Meisyn missed out on as an orphan but is now joyously cherishing.  She spent two hours straight this afternoon loving on Baby Belle.

In Memoriam for Zane Joseph Li Zan Zucco

We cherish the time with you and your impact on our lives.  Run well my dear boy, RUN.

We are now moving into the Memorial Day Weekend. This is the time appointed
specifically each year to honor those who have passed from us into death. This
year it is particularly bittersweet as we so freshly feel the grief of Zane's
unexpected death. There is no memorial to Zane. There is no official burial
plot to bury his ashes. We will make one. We make one here at his CHI family.

We have mourned with his devastated waiting family....Anthony, Honour, Caitlyn
and Ty. They have asked that we honor Zane by helping others.

"Our thoughts are for any collected funds to go towards the adoptions of any
other older boys that CHI represents - as well as to help any children that were
significant to Zane. We feel that it is important to bring these children home
and alleviate expense as a factor as much as possible. Those costs are only
seeming to climb higher and higher. Memorial Day is a perfect time of honor - I
love that you all thought of that! I know that if even one child can benefit
from this - that will matter so much in this world." The Zucco family

Zane's SWI has one adoption registered girl left waiting for a family. She is 4
years old and has Down Syndrome. The rest of the waiting children are all boys.
Most of these boys are over the age of 5 years old. Without exception, these
children have been registered for adoption for years. Their story is much like
the story of hundreds of waiting children in Chinese orpahanges. In Zane's name
and memory we will work for them.http://childrenshouseinternational.com/in-zanes-memory/

Li Zan has gone to Heaven first

It is with profound and consuming grief that we share with you that Li Zan, Meisyn's orphanage big brother, has passed unexpectedly from earth.  Every person who knew him is overwhelmed with the sadness of his life in the physical world having ended when the promise of a full future was ready to bloom.  He survived years of frailty, daunting Chinese winters, and one life saving heart surgery.  After 4 years of waiting he also finally had a forever family processing their paperwork to get him home.  They have lost their son.  May we hold them in our thoughts.

 Li Zan was loved deeply by his orphanage family.  He was a curious, clever and sometimes naughty boy who could not be trusted around little girl’s Barbie with a pair of scissors.  Barbie in a page boy was his idea.  Sometimes he didn’t want to study and had to stand in the corner for 5 minutes at the SWI school.  He was a boy who wanted to do what other boys do.  He had a special place he liked to climb in the wash room.  He fell from there onto the concrete floor and died of his internal injuries.  In the end it was his complicated heart that killed him.  The medicines to save his heart caused the bleeding not to be stopped.  He was unconscious and with others when he died at 3 PM 5/21/2013 Beijing Time.

Last night the girls were told of the accident while Li Zan still lie in a coma.  They drew pictures and wrote letters to him.  We all prayed for his healing and safety.  We know he is now healed and safe but how he will be missed! 

 

Today Meisyn only lasted one hour at school. She is dizzy, is feverish, and has a belly ache.  When she arrived home, I shared with her that Li Zan had passed to heaven.  She cried big sad tears for her friend.  But she smiled and said that now he could run a long, long way and not be tired.  His lips would be pink like hers.  Meisyn's eyes got very wide when I reminded her that she would run in heaven as well.  She immediately planned to challenge him in a foot race and squealed that she might even win!  She expressed that she hoped our little dog who recently passed would be there to play with him because he would really like that dog.

Dear Li Zan, boy that I prayed for many years, hugged on in China and now grieve over…your life matters.  It is honored.  It is appreciated.  May you come without your scissors in hand and take Meisyn’s when it is her turn to leave this realm.  I am counting on you to continue to be her big brother and keep her safe.

Li Zan, SAVE A PLACE FOR US http://www.youtube.com/watch?v=zbsBUf9VKyc

Stefani Ellison

Faith, Trust and Pixie Dust

DREAM friends! Busy Bakers and Gallant Gifters

“If you never did you should. These things are fun and fun is good” Dr. Seuss
 
There are 3 kind, motivated, generous, and inspiring older girls in Meisyn's class at GPA, who understand fun and want to make sure Meisyn has it too.  Ellie, Sarah, and Emily decided on their own to organize, plan and conduct a bake sale for Meisyn's Disneyland Dream.   What a tender gesture which came as a complete suprise to us and their teacher!  They came to school with a personalized envelope adorned with sparkles, smiley faces and "For Meisyn's Dream" It was filled with money!!  LOTS OF MONEY!!  More money than Meisyn has ever held in her hands.

We drove directly to the bank where Meisyn created a Dream Account and deposited the $206 which her totally awesome friends asked her to spend at Disneyland.

Our ever so helpful bank representative Delaina gave Meisyn her very own business card.  Um, Meisyn has already tried to phone her twice to check if her money was okay.  I can't promise I can't catch her in the next time Delaina!  She has the business card tucked in her pocket.

Meisyn's Sand Bucket List

I have been asked to share what is on Meisyn's Sand Bucket List.  I will post the actual list so you can hear directly from Meisyn on what those items are.  Her very last item she does especially well.

Go to Auntie Kim's house
Go to Disneyland
I want to meet of Rapunzel
I love to get sparkly ring
I love found shells at beach
I love have princess party (she drew a picture of beds. She means a slumber party)
Buy my own I-pod
Pet a hamster (I think she means have a hamster for a pet...yikes)
Purple sparkle nails
I love to get purple flowers (Operation Purple Blossom is underway in the Ellison garden)
Help zoo animals
Fly with fairies
To love

Meisyn's Make A Wish Smilebox

We have made our official request to Make A Wish Utah and they are working hard to help her meet her royal counterparts at Disney.  It would be especially fantastic if Rapunzel was there too.  For a little orphaned girl who always had to have a boyish and sanitary hair cut, long beautiful hair is the center of her attention and obsession now. :)

http://smilebox.com/playBlog/4d7a59324d544d354d6a493d0d0a&blogview=true

What does the name MEISYN mean?

 

We named our daughter Meisyn.  While waiting for her adoption to process, it took a great deal of time to find a name we felt would fit her just right.  We tried on different names until we found one that felt "just right" for her.  Little did we realize just how right that name would prove to be.

When people see my daughter's name Meisyn they are 1. baffled as to how to pronounce it and 2. curious to know what it means. 

It is a combination of the Chinese characters MEI and XIN. Can you only imagine English speakers trying to figure this one out?   To English speakers, it sounds like the name Mason. So we angelicized the xin to "sin" but thought it more feminine spelled with a "y" thus "syn". 

The most common Chinese character used for a girl's name MEI is the one for beautiful.  While this would absolutely fit, it is not the one we chose.  Instead we picked the MEI for plum blossom.  It is a little pink/purple blossom that blooms under the most harsh conditions.  It should not live and flourish but it does.  It is a symbol of courage and hope.

梅 Mei

Plum Blossoms Symbol of Courage for Chinese New Year

Plum Blossoms are winter flowers and will bloom in late winter and early spring from a tree branch, that seems lifeless. Emerging before the leaves, you will not expect a beautiful bloom to appear from its bark. The fragrance will also surround the air and in that cold winter, you get to enjoy the delicate scent and colorful blooms. To the Chinese, these symbolize courage, hope, beauty, purity and prosperity.

心 Xin
The Chinese character XIN means heart, center, core, feeling, thinking, bosom, and spirit  The Heart has long been recognized across cultures as being a symbol for love, charity, joy and compassion.   In ancient China, it was thought that the big pumping organ in your chest was where your thoughts came from, or where your soul resides. 

In short, Meixin (or Meisyn) means "courage and hope of the soul, resilience, compassion, love"  Our daughter has shown to be this brave purple petal who trails love to all in her path, just as her name means.  The name Meisyn is unique, rare, and meaningful just like the child she is.

 

Why Messages from Meisyn?

Meisyn's body is dying.  We haven't told this to Meisyn, she has told this to us. 

Our little Meisyn turned 7 years old in January 2013.  She lived the first 6 years of her life in an orphanage in China.  She has had a full, final and forever family since March 28, 2012.  My name is Stefani and I am her MOM.  I will be the author of this blog and the documentarian of her life.  It is a responsibility I am honored and humbled to have but one that is tremendously hard for me.  Physically I cannot speak about Meisyn's situation as the words get utterly tangled in my throat and I cannot breathe.  Instead I will use this blog to share the wisdom that Meisyn possesses and wishes to share with the world which she will leave far too soon.

Before her adoption, the extent of her medical condition was not known.  It was thought to be likely an orthopedic issue including severe rickets with bilateral dislocated hips.  The minute I picked her up in China, I knew something was seriously and profoundly "wrong".  Yet, I didn't even then consider something as devastating as a neuro-muscular condition.

After mutliple MRI's, possible diagnoses and specialized tests, it is our understanding that Meisyn has a very rare and degenerative form of Spinal Muscular Atrophy (SMA) which is part of the Muscular Dystrophy family.  In her case, her nerves are degenerating.  The nerves can no longer carry instructions from the brain to the muscles thus the muscles atrophy. 

Meisyn has never walked.  She has severe scoliosis and weak core muscles which make it hard for her to sit up.  In the past few weeks she has lost a great deal of strength and stamina.  We are aware that this will continue to worsen and she will continue to weaken as her nerves continue to die.


Through this blog, I will share the messages that Meisyn has started sharing with us.  She is a child who seems to be unusally close to the veil between spirit and body. I feel she is meant to be a teacher and I, in turn, will be her scribe.  She is a prolific writer of notes and pictures which I will share.

Thus begins the formal written record of Messages from Meisyn.