Wednesday, July 31, 2013

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

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

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.

Saturday, July 20, 2013

Beauty of the Broken Butterfly

Meisyn officially asked Make A Wish last week to "FLY WITH THE FAIRIES".  She longs to be part of the girls in Pixie Hollow and be best friends with beloved Tinkerbell.  As if to give her a wink that this was indeed meant to be, a YELLOW butterfly with PURPLE markings crawled into Meisyn's hands this week.  Not just any magnificent butterfly, but a magnificent BROKEN butterfly who could no longer fly.  Perhaps a symbol of the union of a yellow haired fairy and a purple loving little girl whose wings have also been clipped?  (Note: it is the PURPLE part that is broken)

Meisyn was afraid to touch the butterfly.  So fragile.  So delicate. So outside her comfort zone.  Frankly, so scary.  Sometimes this is how people feel about Meisyn and her broken body too.  They are nervous to touch her when they first meet.  Tentatively she reached out with her weak and crippled fingers and let it tiptoe up her hands.

My dear Meisyn, may you continue to be brave, to try new things, to look for the symbols of hope around you.  Continue to value and cherish the broken things and teach the rest of us to do the same.  May you get that wish to FLY WITH TINKERBELL AND THE FAIRIES.  "It's in the moment your wings grow and you'll let go when you fly with me. Let your heart believe dreams can take you anywhere if you just set them free when you're true to who you are. You will always find your star.  All the wonders you will see when you fly with me."

 Full lyrics of FLY WITH ME from Tinkerbell
There is magic everywhere
In the air you breathe
It's true for every living thing
Why flowers bloom and all birds sing
It's in the voice that guides you on
The light that leads you home
It's in the moment your wings grow
And you'll let go

When you fly with me
Let your heart believe
Dreams can take you anywhere
If you just set them free
When you're true to who you are
You will always find your star
All the wonders you will see
When you fly with me

Paint a rainbow in the sky
Dance on every cloud
The world below is beautiful
Keep it like a precious jewel
Put a smile upon the sun
it shines for everyone
Sing the moon a lullabye every night

When you fly with me
Let your heart believe
Dreams can take you anywhere
If you just set them free
When you're true to who you are
You will always find your star
All the wonders you will see
When you fly with me

You'll find your place
Just take a leap of faith

When you fly with me
Let your heart believe
Dreams can take you anywhere
If you just set them free
When you're true to who you are
You will always find your star
All the wonders you will see
When you fly with me
Wonders will never cease when you fly with me

Friday, July 19, 2013

I'm Sorry Sister Lan

When "I'm sorry" doesn't make it better, Meisyn resorts to  love notes

Saturday, July 13, 2013

The Memory Keeper

Meisyn brings up conversations with me that throw me scampering for answers.  Sometimes when I begin the conversation it takes me a while to find out the WHY.  This week it was:

Meisyn: Mom, where does my Ipod go when I die?
Mom: Um, well, I guess you can decide who you want to give it to. Maybe you could give it to Jaeya.
Meisyn: No, I will need it. Make sure you put it in my box (casket) and don't forget the charger
Mom: Do you really think you will need an Ipod in heaven Meis?
Meisyn: Yes, I love my Ipod. I will need it. Don't forget. Put the charger in my purple sparkly box (casket) too.
Mom: ??????

 This conversation was just as natural as, "What should I pack to go visit Grandma.?". Later Meisyn was talking again about her magic Make A Wish key and I said, "Jaeya and Lan are so excited for your wish, but I think maybe just a tiny bit jealous of all the things you get." Both girls nodded and admitted they are a tiny bit jealous. Meisyn wrapped her arms around Jaeya and said, "Oh sorry! You can have my Ipod.... AFTER I die then." The girls were then on to another conversation. 

Yesterday, the Ipod conversation continued as Meisyn was once again scanning the picture gallery on her treasured device.   She takes pictures of people and things she really loves. She is very picky about what she chooses. Lately she has begun to label the pictures. I assumed it was her delight in learning how to spell.

Meiysn:  Mom, I decided not to give my Ipod to Jaeya after I die.
Mom:  Its your Ipod.  You can decide what to do with it.  But, Meis, why will you need it?  
Meisyn:  So I can remember.
Mom:  Remember?  Remember what Meis?
Meisyn: Remember what you look like.  Remember to everything my special.
Mom:  Meisyn, you will remember everything!  You will remember all your life from when you were a baby.  About all of China.  About our family.  You will take every memory with you.
Meisyn:  Really??  Really, really?  But I get a new sparkly body.  My remembers will stay with my old broken body.
Mom:  BAM!!  REALIZATION.  Light bulb moment.  OH DEAR MERCY!! Meisyn believed she would lose her memories.  She needed her Ipod to teach her new body, her new memory, who we were. She wants to hold all the treasures she wanted to remember and take with her.  She has been labeling them all IN HER IPOD so she knew what they were and why they were special.  

Oh my dear, sweet girl.  You will remember.  You will take it all but if you need your Ipod to make sure you don't forget, it will go with you in your purple sparkly box.  Treasures such as you have gathered now mean so very much more as I finally understand.  You are making sure you remember who YOU WERE.  Who we ARE.  We will not forget.  EVER.  EVER.  

Saturday, July 6, 2013

Find Joy and Jump in the Rain

Today Teresa is buried in her tiny pink casket.  It is a grey day through and through for so many of our hearts.  I sat down to organize and file papers from my desk and found a drawing Meisyn made while she was waiting with me at the bank.  Once again Meisyn teaches us that life is meant to be loved, even on the stormiest of days.  Here Meisyn enjoys the downpour under her umbrella.  Her smiling reflection is found in the puddle below.  This little girl who has never stood, never jumped a day in her life, believes you don't need working legs to make your heart, your soul, JUMP.  This drawing, even only in grey, has still found a way to sparkle.  These children living in the storm surely teach us that without the rain, there could be no rainbow. Thanks for this message today Meis.

So, here is my message back to you my joyful girl,
You teach me, and all you touch, to use your life to MAKE A SPLASH to FIND JOY and JUMP IN THE RAIN

Friday, July 5, 2013

Meisyn's Magical Make A Wish Key

“You can wish for anything.  We will work to give you ANYTHING your heart desires”, so began Meisyn’s assigned Wish Granters on their official Make A Wish visit Tuesday night, July 2, 2013.  “To help know what you really want we will ask you to answer 3 questions.  1.  Who do you want to meet?  2.  What do you want to do?  3.  What do you want to get?  First then Meisyn, if you could meet ANYONE in the world, who would it be?”
Meisyn’s eyes lit up and she shouted out, “My birthmother!!!”  Uncomfortable looks from the Wish Granters and I step in to say, “Meisyn, some wishes are too big for this earth.  Jesus has to make those wishes come true.”  “Okay then, Rapunzel!” Meisyn responds.
The Wish Granters continue, “Alright.  If you could do anything, ANYTHING in the world, what would you want to do?’  Quick as lightning she exclaims, “WALK!  I want to WALK!”  Once again the Wish Granters squirm and I save them  with, “Meis, that’s another Jesus wish”.
The night continues with the Wish Granters so kindly allowing Meisyn to dream of all the possibilities open to her.  When it came right down to it, she just couldn’t choose between “Be a Popstar” and “Fly with the Fairies at Disneyland”. Where in heaven’s name did the Popstar come from?  She has been talking endlessly and for months about the Disney Princesses. That would be the video she watched that morning opened up new possibilities, thanks so much purple haired Barbie. In the end, after much deliberation, she decided seeing the princesses, and the fairies AND the dolphins at Sea World was where her heart’s wish still really was.
We were very surprised to learn that while Disneyland is a 7 hour drive down the highway, Make A Wish sends their families to Disneyworld.  Say what??  So it will go before the board to see if a huge family like ours can be approved for Disneyworld.  It will also likely be September or October before they can get the wish prepared.  We are still in shock that they would even consider this wish for our whole family.
We had been planning a trip to San Diego to visit with many friends the end of July hoping we could tag that on to the Make A Wish trip.  We are now trying to figure out how we can make that happen so the children over 18 years old can experience a family trip before college starts again for them in August.  Always needing a plan X, Y, or Z at our house but oh doesn’t that make for an exciting adventure.
We are humbled to be considered by the Make A Wish Foundation.  We are completely grateful.  But, at the same time, it was a sobering experience, bittersweet for sure.
There is magic in every step of this process.  Today a spectacular skeleton key arrived with Meisyn’s name on it. Remarkably, it will OPEN the Wish Door in the Wishing Tower.  CAN YOU IMAGINE??  Watch Meisyn’s response as she experiences this part of the magic.

Tuesday, July 2, 2013

Teresa, ride like the wind

Teresa fought with every ounce of energy and determination her little body could hold.  Ultimately her little heart could do no more.  She rode her princess bike to Jesus on July 1, 2013.

How, how, how do we walk on when our children are left behind? How do we leave their little vacant bodies and walk away when the last thing we feel we can survive is unclenching our fists that hold them to us? The only way I can survive this is to review the messages that Meisyn has been sharing with us about her own impending death. These messages are meant for me because without them to hold up I fear I will drown in my despair. We have tried to deny that this will happen to my daughter She steadfastly urges us to prepare. She understands the joy that awaits her. What she does not, is the utter and wrenching pain that awaits those of us who must stay after she has gone. Ann Bartlinski I am so very pained to know there is silence in your home and in your heart. The picture of that thick black pony tail cascading over Ann's elbow just spiraled me into near devastation. May there be messages and memories that carry you through this black hole.
My dear little one. Ride that bike. Ride like the wind. Ride until your hair flies straight up so we can see those beautiful new pierced ears. Well done Teresa. Well, well done. You have earned those angel wings and will keep heaven o...n its toes. Maybe you will soon meet our little friend Li Zan. He had a broken heart too and by now has explored heaven inside and out and can show you all the best places for hide and seek. My Meisyn adores this game. Can you make sure when she arrives you include her too? We here are sad to say so long. "The only way to take the sorrow out of death is to take the love out of life" Author Unknown. You were deeply and completely loved. Now just fly, fly dragonfly. We love you too.