Saturday, January 4, 2014

FIGHT, FLIGHT or FREEZE

When stress soaks the brain with adrenaline, we have been taught that people fight or flee.  Example, when being chased by a wild animal it is time to fight it or flee from it.  There is one more that isn't talked about much and that is FREEZE,  "an act of holding or being held at a fixed level or in a fixed state."

This is where I, Meisyn's mother, find myself.  I have sat down to type at this blog multiple times.  I have thoughts run through my mind of what to post.  I just can't do it.  Just can't.  I am frozen.

I know the 5 stages of grief, DENIAL, ANGER, BARGAINING, DEPRESSION and ACCEPTANCE.  Where is FROZEN?  Where am I?

I have heard of post holiday depression, post MAKE A WISH trip sadness, but I didn't understand that it doesn't just affect the sick.  It affects all those in their circle.





Today is Meisyn's 8th birthday.  In all likelihood this IS actually her true date of birth as of all my 7 adopted from China, she was the only one left with a birth note.  Here we are.  We had tremendous worry earlier this year that we wouldn't see this day.   We worried we wouldn't make it to Disneyworld.  Then to Christmas.  Next to her birthday.  It is as if there is nothing for me to hang on to now.  I am in a fixed state of paralysis.

Meisyn is happy.  Meisyn is cheerful.  Meisyn is also tired.  She doesn't leave her power chair at school.  She doesn't attempt the stairs.  She wearies from dragging herself even to her bedroom now.  She has pretty much stopped drawing.  She is too tired and distracted to complete a full task and sharing her heart through art seems too much.  Her short term memory is getting ever shorter.  She doesn't recall what you have just discussed with her.  She continues to slip and I am helpless to catch her.


Meisyn is going to have to help us know how to move from here.  The problem is that the cold still bothers me.  How do I LET IT GO?



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