Tuesday, October 29, 2013

MISSING!!! The Memory Keeper

Oh there is panic in the Ellison household.  Miss Meisyn cannot find her Ipod.  This is a coming tragedy.  The Ipod was on her Sand Bucket List and was donated by a group of very loving moms.  Here is a reminder of that joyous day.


Its not just an entertainment device.  It is her Memory Keeper.  Something she is adamant goes to heaven with her so she remember the joys of her life.  (I recommend a tissue before you follow the next link.)


We leave for our MAKE A WISH trip to Disneyworld  ONE WEEK from today.  We need the Memory Keeper!  Last night Meisyn began bartering Jesus for help, LOL!  She brought me a drawing and asked if I could mail it to Jesus.

Me:  Wow Meisyn.  You and Jesus are having so much fun.
Meisyn:  We were just talking and playing.  I told Him I would draw a picture to him.
Me: You wouldn't be wanting Him to tell you where your Ipod is hiding would you?
Meisyn: Yep!  He will know.

Okay Jesus, help us find it.  I know You can too.  And I have lots of friends that I am confident will help us ask you too.  By the way, I have never seen You in a necktie.  Makes me smile.
******** UPDATE 10/31/2013 *********
THE LOST HAS BEEN FOUND!! The frantic searching has ended and the Memory Keeper has been recovered. With Ammie and Liyah hiding treasures, missing precious things could be anywhere. But it was not them at all. Meisyn knows she needs to keep the Memory Keeper safe from the Littles but her memory is not what is used to be. One of the bummers of the progression of her condition. She said that her mind told her to look behind a wooden quote we have leaning against the front of the stairway. Sure enough, there is was, tucked where she had put it. We would not have found it until we decorated for Christmas. THANK YOU for the whisper in her ear that jogged the memory.

Sunday, October 20, 2013

"The Little Girl" a story by Meisyn

Thank you Lizzie B. for helping Meisyn write this gem during your play date.  Who do you imagine is the new friend?  Never once has Meisyn drawn herself sitting or in a wheelchair.  She is always, standing, dancing, or playing tag.  That is the way she longs to be.


Wednesday, October 16, 2013

Jaeya, Meisyn's Constant

Meisyn has gone from her birth family, to orphanage, to adoptive family.  She doesn't remember much of the past as she is only 7 years old.  But there is one person who remembers for her.  One who has been her constant.  This is her sister Jaeya.  Biologically they are likely not related, but in every other way the are as true as real sisters can be.



Jaeya has her own physical struggles.  She was born with osteo-genesis imperfecta (OI).  Most have heard of it as brittle bone disease.  At 13 years old, she weighs 35 lbs, is 3 feet 4 inches tall and cannot straighten her elbows or knees due to multiple broken bones.  Jaeya arrived at the orphanage 6.5 years before Meisyn...and she remembers.

Last night we stopped to have dinner at the Chinese market on the way home from Jaeya's medical treatments at Shriner's Hospital.  The food brought the conversation to China, then to life in the orphanage, then to the night that Meisyn arrived there.  Due to Jaeya's fragility, the staff kept her in the baby room her whole life.  They worried that ambulatory children would crush her, which indeed they did on multiple occasions.  As a side note, when the caregivers were tired and babies cried in the night, Jaeya was called into nursemaid duty.  This teeny, tiny girl was in charge of changing diapers and holding baby bottles to fussing lips.  She thinks she should have been paid, LOL!

Jaeya: "Hey, I remember when Meisyn came to the our house.  I was 6, or 7, or 8, something like that.  We were getting ready to bed and the police man came to say there be new baby coming.  Then he went out.  I look out the window and see police car.  Then door open and baby took out. Took out a baby car (stroller) too and put baby in it.  Then come inside.  Baby was crying and had short pants and little bit of clothes. It was the hot time. She had a water bottle and somethings."  According to the official reports and the explanation from her director, this is very consistent with her circumstances.
Meisyn in the winter of 2007
Meisyn and Jaeya kept growing.  As the two children in the facility who could not walk, they were relegated to life together.  Not something they always enjoyed, like real sisters.
Referral picture 2009
 As an adoption professional I saw this referral picture for nearly 2 years as she kept getting passed over for placement.  I never had an inkling that she was my child.
 I followed her on Love Without Boundaries who was trying to advocate as well with the  privacy name Rochell.http://www.lwbstories.com/?p=4775
Passport picture winter 2012
Ultimately, It was Jaeya to lead us to Meisyn.  After advocating for her with no success, we realized that she would be an Ellison.  What we didn't know is that she would bring Meisyn with her.  It was the following article posted to Love Without Boundaries right after we decided to move forward with Jaeya that hit us in the heart.  We knew there was no way to separate friends.  Jaeya, Meisyn's constant, must remain so.  It was the wisdom of Winnie the Pooh and the potential sorrow of separation that kept them together.  What none of us understood is that there will come a separation that we can't control.  At that time, we will depend again upon the advice of a boy and his beloved Pooh 
Jaeya left, and Meisyn right, on medical trip to Shanghai 2011


http://www.lwbstories.com/?p=7773

Pamela and Rochelle: Friends Forever!

It is more fun to talk with someone who doesn’t use long, difficult words but rather short, easy words like, “What about lunch?” – Winnie the Pooh

Rochelle and Pamela recently hung out together at the hospital where they were having their exams done. Neither girl can walk, and both use a wheelchair or walker to get around. Pamela (wearing the yellow jacket) has a bone disease called osteogenesis imperfecta and is said to be a very smart little girl.  Rochelle’s diagnosis is not as clear, but she is not able to walk independently as her legs are not strong enough.  Rochelle is a creative little girl with artistic talent many of us wish we had.

Aren’t we all curious what these two are chatting about? Seeing these two girl enjoying the sweet smiles and giggles of childhood is so touching.   Both girls are on the shared list and are available for adoption now.  We hope that we can spread the word about these two friends to help their families find them so that their unique abilities can be fostered for life.

If ever there is tomorrow when we’re not together.. there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. but the most important thing is, even if we’re apart…I’ll always be with you.Winnie the Pooh

Love Without Boundaries proudly advocates for adoption but is not an adoption agency. We invite you to contact adoptionassistance@lwbmail.com with questions about a child we have featured and encourage you to contact your local adoption agency for more information about China’s Waiting Child Program.

" If She Be Died She Be Perfect"




Zombies, ghosts, the restless dead...these are the creatures of Halloween.  To Meisyn, they are most confusing.  More than most 7 year old children, she has had death on her mind.  She must address it in a real and direct way.  We as adults can't figure it out, and frankly don't wish to dwell on it.  Halloween in the air, the falling of the autumn leaves, the maturing of her mind, and even the return to school, all combine to make for complicated questions. (The first week back, a friend at school seriously asked, "Meisyn, why are you here?  You are supposed to be dead".  Meisyn asked me then, "Why I not be died yet Mom?" )

Watching an animated Halloween movie from Redbox, this became the conversation:

Meisyn:  Mom, why she be died but not in her sparkly body? Why she walk like that, like a robot?  If she be died she be perfect.  Right mom?  Right?

Mom:  Well, she is a zombie.  Zombies don't get a...zombies well, zombies are just pretend.



How do you explain this???  How do you assure a little girl she will not get stuck as a zombie or lost ghost?  I can't do that.  The world cannot do that.  For her, for us, it has been to rely upon the Savior and the deep testimony we have that He has risen and through that, Meisyn will too. The rising will be in a perfect and sparkly body.  Meisyn will not end when the muscular atrophy causes her twisted and tired body to stop breathing.  How can I prove this?  I can't.  But there is no way my soul can begin to embrace that death is the end of spiritual matter.  The body yes, the spirit no.  My soul, Meisyn's soul, embrace me with the knowledge that there is more, much, much more.
Meisyn, you are right, when it is time, "IF SHE BE DIED SHE BE PERFECT".

“I bear witness of that day when loved ones whom we knew to have disabilities in mortality, will stand before us glorified and grand. Breathtakingly perfect in body and mind. What a thrilling moment that will be. I do not know whether we will be happier for ourselves that we have witnessed such a miracle or happier for them that they are fully perfect and finally free at last. Until that hour when Christ's consummate gift is evident to us all may we live by faith, hold fast to hope, and show compassion one to another.” Elder Jeffrey R. Holland, Quorum of the Twelve Apostles, October 5, 2013


Thursday, September 26, 2013

Family Is Deeper Than Blood

Brandon is my nephew.  He is also my buddy.  Thank you for recognizing, understanding and recording what really matters.



http://bspphotography.blogspot.com/2013/09/family-is-deeper-than-blood.html

 Love, Aunt Stefani

Thursday, September 12, 2013

MAKE A WISH TRIP SCHEDULED :)



To all of you who have ever donated to Make A Wish Foundation or will in the future, we give you our deepest thanks.   Hearty thumbs up to our local Lin's Market for giving the community an opportunity to grant wishes to Utah children.

The FAIRIES have landed and bestowed a wish to Meisyn and our family.  We will leave from Las Vegas to WALT DISNEY WORLD on November 6, and stay until November 12, 2013. We will visit Disneyworld to fly with the fairies, Sea World to play with Meisyn's favorite animal (dolphin) and then on to Universal Studios.

We will stay at Give the Kids the World Village where I hear you can order ICE CREAM for BREAKFAST at the especially kid friendly restaurant.  Oh my!  Close to Heaven.
We will swim in the pool, ride the train and spend 5 days concentrating on childhood and the dreams and wishes that its brings, even to children who have grown up kind of worries.

We are ecstatic to know we will be Making Meisyn's Wish at the VERY SAME TIME as Finnley Smith and her family make their wish.  She is another CHI China child who came home just after Meisyn and who has also unexpectedly tested positive for Spinal Muscular Atrophy (SMA).  We will be taking 13 children and they will be taking their 14 children and together we will turn central Florida on its head.
We have also learned that our dear friends the Millenders will be at Disneyworld too this very same time.  Won't it be amazing to get us all together??  How can the Happiest Place On Earth have so much joy awaiting us?  We can't wait to find out.


Wednesday, September 11, 2013

Because You Never Know...and You Deserve to

Do more than you think you can. Be stronger than you think you are. Because you never know. However, YOU DESERVE to know and so do THEY. Who is better from the adoption? Meisyn? Me? Every person who meets her? No answer necessary. So glad WE KNOW.

Because You Never Know

Why should you reach out to those who are less fortunate you? Why should you sacrifice and give to others? Why should you let go of the things you enjoy so that you can give more of yourself and time and money to those without?
Because you never know.
I have heard a well known preacher say over and over again that you simply don’t know what hangs in the balance. The decisions we make and the good we try to do seem insignificant. Maybe even pointless.
His point is that the surface we can see may not be the limit of our words and actions. Even the smallest sacrifices can have a huge influence. The smallest bit of good we do may end up having an effect well beyond ourselves.
When my wife and I chose to adopt our son, it didn’t seem like a simple one. I now know that it is. The question of “Why would we do this?” easily turned into, “Why wouldn’t we do this?”
A simple act, but one that carried more consequence than we could have imagined.
Knowing what I know now, I would do it a thousand times over. I would do it as much I could. I would do it until there was nothing left of me.
My son. Two days after we met him. Before we knew.
My son. Two days after we met him. Before we knew.

What We Did Know

Before we adopted him we knew that he had some health issues. This is the reason he was an orphan. We believe he was abandoned because his parents did not have the resources to get him the medical care he needed.
This is the reason we get to be his parents.
Once we arrived home we began the process of doctor visits and diagnostic tests and decision making. Last December he underwent a surgery to correct and repair. To restore.
During the surgery tissue was removed. Tissue that wasn’t necessarily abnormal, but wasn’t necessarily okay. There was no immediate concern, just precaution. As a routine process, the tissue was sent to the pathologist. We received the final report 2 weeks after the surgery.
It was cancer.
Nobody knew or suspected he had cancer. Yes, the doctors told us it was possible, but we also felt it was unlikely. When the surgeon skillfully used his scalpel to remove it, he did not necessarily suspect it. He was as surprised by the outcome as us.
I’ve written about the adoption process, specifically our struggles to adjust, with vulnerability and openness. But I have yet to tell you about our son’s cancer because I didn’t know what to say. At times it is too much to process.
His prognosis is excellent. All of the cancer, as far as modern medical science can tell, was completely removed. There is no further need for surgery or chemotherapy or radiation. The plan is to obtain yearly tumor marker studies. A simple blood test.
Our doctors reassure us that there is no reason to think the cancer will ever come back.

What If?

I can’t help but think through all of the things that happened and all of the decisions that were made that could have led to a different outcome.
What if he hadn’t had an obvious medical problem? Would he have been abandoned? Did his biologic parents realize they weren’t simply getting him medical care, but saving his life?
What if the best surgeon in the world for his kind of problem didn’t work two hours away? Would we have gotten such excellent, experienced care? Would the cancer have even been discovered?
What if the surgeon had decided that the tissue looked okay and left it?
What if there had been a delay? What if he hadn’t been adopted until he was four or five? Would the cancer have started spreading?
What if we had been scared away by what we did know? What if we had felt his medical problems were too much and we had passed on adopting him?

What I Didn’t Know

There is another question I ask myself, one that hits me hard in the very core of my being about who I am and what is important in life.
What if I had kept saying no to adoption?
Because initially I did.
When my wife first proposed the idea I did say no. I resisted. I avoided the subject. I came up with reasons why it should be somebody else. Smart, careful, reasons. Ones full of discretion and sound logic and wisdom.
I came up with reasons why I could never do that.
We already had four kids. More interfere with our ability to parent them. We were already busy. How much more could we do?
When we adopted we were only beginning to get to a place in life that was a little easier for us. Our children were getting bigger and less demanding of our time and energy. My job was beginning to pay better and give me more free time.
And I kept saying no to adoption because I knew it would ruin what was beginning to be good. I knew adoption would be messy. I knew it would make life harder. I knew it would force me to put things I wanted on hold for a time, if not forever.
I knew adoption would hurt, but I didn’t know how much. It is easily the hardest thing I have done.
And I almost let what I knew prevent me from doing something good.
Of course if I had known about Jude’s cancer, I would have said yes immediately. If I had now how incredible he would be, I would have raced to be the first in line. If I had known how much I love him, I would have done everything.
But I didn’t know.
And because I didn’t know, I tried my hardest to say no. And we almost didn’t get to his parents. And we almost didn’t get to be a part of his story and his life. A story of an orphan who now has a family. A story of a child who is cured of cancer.

Because You Never Know

You don’t know either. None of us do. No one can predict what will happen. No one can understand the potential consequences of their decisions.
  • Why should you do hard things?
  • Why should you sacrifice?
  • Why should you give your life to something good, even when you know it will come at a cost?
  • Why should you love?
Because you never know.


Tuesday, August 27, 2013

Meisyn Slideshow 8/26/2013

Meisyn's older sister Jaeya fractured her neck. The good news it is just the C6 vertebrae that is broken with no spinal cord involvement. So, we are a bit wrapped up in keeping Jaeya wrapped up right now.


Talented big sister Shayna put together a sweet slideshow of Meisyn. Enjoy seeing her smile through the last year!!!

Tuesday, August 13, 2013

HAPPY!!! BACK TO SCHOOL



NEW SCHOOL YEAR HAS STARTED!! 
TEACHERS GOT NEW DRAWINGS DECLARING MEISYN IS HAPPY.  WE WEREN'T SURE WE WOULD EVER SEE HER BACK TO SCHOOL.  CLAP ALONG!!




N

Thursday, August 8, 2013

We Can CHOOSE to DANCE!


Life is hard.  Its complicated.  Its disappointing.  Somehow a little girl who has never been able to stand has learned how to make her spirit continually dance.  In the hundreds of portraits she has drawn of herself she is always upright  .She has never drawn herself with legs that cannot stand or cannot walk. In her latest portrait she is dancing. Dance my girl...DANCE!


So when I am tempted to feel sorry for myself, be disappointed that at middle age some of my dreams didn't "come true", be weary that every day is a struggle to parent children, to feed my soul, I can CHOOSE to dance.  It is not my body, my environment, my bad luck that determines the happiness of my soul. IT IS MY CHOICE.  Meisyn embodies this truth. 
CAN YOU CHOOSE BETTER TOO?

Thursday, August 1, 2013

Meisyn's Beach Bucket Blessing July 2013

Before you view, please find the pause button on the SCM Music Player link at the top of the blog. If you don't, you will have competing songs and frazzled nerves.

This is our "THANK YOU" from the Ellison's to all those who allowed Meisyn and our family to take a heart picture. We will carry this memory with such happy reflection. You have left your footprints on our family.

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Have you ever wondered how Miss Meisyn gets around with legs that she cannot move voluntarily? She has devised a way to get where she wants to go....dragging her legs by hooking them over her hands. Take a minute and watch her as she is determined to make it to the ocean of her own accord. She feels the surf for the first time in her life. Notice she leaves a MUCH BIGGER footprint in the sand than most people. The same way she leaves her footprints on people's hearts..

 


Wednesday, July 31, 2013

MEISYN, 7-year-old girl with rare disease, visits San Diego Zoo - San Diego, California News Station - KFMB Channel 8 - cbs8.com



7-year-old girl with rare disease visits San Diego Zoo - San Diego, California News Station - KFMB Channel 8 - cbs8.com
CLICK ON THE LINK TO VIEW THE VIDEO

SAN DIEGO (CBS 8) - "A special little girl crosses off an item on her bucket list at the San Diego Zoo.  Seven-year-old Meisyn Ellison was adopted from China last year and has been diagnosed with a rare and terminal form of muscular dystrophy.

Among the things she wanted to do was travel from her home in Utah to San Diego to see the animals at the zoo. Her wish came true Tuesday and she even got to help feed the elephants.
Meisyn is capturing and saving all her memories on her iPod and her mother is documenting her experiences on a blog. Click here to visit her blog."

Yes, Meisyn was able to check off "Help Zoo Animals" on her Sand Bucket List!!!  We were overwhelmingly blessed by donations from many friends to get Meisyn and 13 SIBLINGS and nephew to Southern California where they serve carne asada french fry plates the size of your head.  


There they were greeted by the staff at the Otay Best Western in Chula Vista who donated a room for two nights and kindly reduced the rates for the other rooms.  In the breakfast room was a banner welcoming MEISYN and the ELLISON FAMILY to their hotel.  Huge thanks to manager Victor and special Meisyn auntie Melissa Baldwin for providing this.
Meisyn could hardly wait to get to the zoo but then was knocked giddy to learn that she would be followed by a local news crew.  Being on TV was a Sand Bucket Item she had never even thought of but got to experience!! The day got even better as she was able to join Krissy, Shaba the elephant's trainer, in the feeding pen.