Sunday, June 30, 2013

Just Fly, Fly, Dragonfly

We saw a dragonfly.  Not just any one dragonfly but  a soft swarm of bright bluish/purple fliers.  Meisyn is instinctively terrified of bugs.  Her reaction to the dragonflies was at first fear and repulsion.  As we grew quiet sitting along the bank of the lake, Meisyn began to allow the dancing creatures to flit around her hands.  Caden found one lying still in the grass,  bent and broken, dead. 
Meisyn’s heart was fuller with compassion than with fear and she asked to touch it while I held it in the palm of my hand.  She traced its intricate wings and bowed head with her quivering finger.  She expressed her sadness that the dragonfly was without its family.  She worried if it was scared and lonely.  We talked how all creatures return to heaven, go back to the loving God that gave them life. It would find her family.  She expressed her relief that the dragonfly was free and could once again fly.  She envied those dragonflies.  More than anything, Meisyn desires to fly. 

Perhaps you have seen a Mormon structure with spires that rise towards heaven. It’s not a church.  It is more.  It is a temple.  Within the temple covenants are made to bind families together for eternity.  Not just for this earth life are we bound together, but forever. 
On June 29, 2013, Meisyn and Jaeya were sealed to our family for eternity.  There dressed in the symbolic white of heaven and purity they exercised what they so often sing in their Sunday classes
“I love to see the temple. I'll go inside someday.  I'll cov'nant with my Father; I'll promise to obey. For the temple is a holy place, Where we are sealed together. As a child of God, I've learned this truth: A fam'ly is forever.” 


What takes place in a temple is sacred and tender.  We were warmly welcomed by escorts in white who cheerfully told us they had been expecting us.  None of us were ever alone.  We were told what would happen at each new step.  In the sealing room siblings grandparents, aunts, uncles and cousins were together and together we were all able to symbolicly look into forever. “there are the temple mirrors—one mirror on this side, one mirror on that side. Together the temple mirrors reflect back and forth images that stretch seemingly into eternity.
Temple mirrors of eternity remind us that each human being has “divine nature and destiny”; that “sacred ordinances and covenants available in holy temples make it possible for individuals to return to the presence of God and for families to be united eternally”; and that, growing together in love and faithfulness, we can give children roots and wings.”  Elder Gerritt Gong

I share this because it was a tremendous and touching teaching moment.  Inside that room, together as a family, we discussed forever.  We discussed death.  Meisyn could visualize “forever” in the reflection of herself and her family in those mirrors.  We spoke of the feeling of safely, love, beauty, and peace that was within that room.  She asked many questions, comparing those feelings to what she might feel in heaven.  Meisyn felt peace.  She understood she would be met at the other side of death’s door by kind escorts who would also be expecting her.  She will be surrounded by all inclusive love and acceptance.  She will have left behind her broken and bent body, but will take with her the love, experiences and memories she had made while in that body. She understood she will  rise like the dragonfly.  She will soar freely in the spiritual realms. SHE WILL FLY.

Friday, June 28, 2013

The Ultimate PRINCESS PROJECT bestowed by Kasie Pullan

 The ULTIMATE PRINCESS PROJECT!!  Miss Kasie Pullan, Meisyn's extra special cousin, took upon herself the project to have EVERY Disney Princess sign a special backpack for Meisyn.  The results were one spectacular backpack, happy tears and unending adoration from one little enamored cousin to the other. 

Kasie was able to spend January to May 2013 interning at Disney Parks in Florida.  She is an expert at not only all things Disney but how to tickle the heart and imagination of a wanna be princess.  Can you count all the royalty that took the time to write special wishes for Meisyn? Follow the link below and see them ALL! Absolutely one of the best examples of love and mentoring.  We love you so much KASIE PULLAN!

Sunday, June 23, 2013


“I Want To See the World, But Not From A Window” Rapunzel

Meisyn has a tight and caring community making sure that this part of her life is more than just looking out the window as it was in the orphanage.  With her physical condition it makes it harder to involve her.  To move away from the window and participate in the world she needs those who will carry her, buckle her, push her, protect her, etc. 

The older girls from Meisyn’s school went even further.  They planned a PURPLE PRINCESS SLUMBER PARTY, They celebrated  Sand Bucket List Item 7 together on Friday night.  Miranda organized and hosted the party where at least 13 giggly girls gobbled down  pizza, purple cake and many other gorgeous goodies.  Then there were movies (Tangled and Ice Princess), fingernail painting and all kinds of reasons for  girl squeals.  She had the time of her life.

I don’t know, I think this might rank as the most awesome sleepover in the history of Cedar City.  Thank you little friends.  And thank you big sisters Kara and Lan who went too so that Jaeya and Meisyn could stay the night.  YOU ARE THE BOMBS!!!

Thursday, June 20, 2013

Competition SHINING for the Princesses

Oh, we have some competition here!  Meisyn saw her first 3D movie and is smitten.  It was pure magic for her.  The Croods made it to the second run theater and we went not realizing how much fun this was truly going to be.   She felt like SHE was running, dancing, chasing, catching, swimming, and LIVING with working legs.  The dreaming she did do, and did so very well.

Meisyn has a new theme song which is quite appropriate and so very Meisyn worthy!  It is Shine Your Way from The Croods soundtrack.  Take a watch and a listen and GO SHINE YOUR WAY TOOl!

Wednesday, June 19, 2013

Meisyn's Community steps up to complete Sand Bucket List

Community steps up to help complete ‘sand bucket list’
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Seven-year-old Meisyn Ellison is adored by both her adoptive family and supportive community. | Photo by Kirsten Murdoch
Seven-year-old Meisyn Ellison is adored by both her adoptive family and supportive community. | Photo by Kirsten Murdoch
The Ellison family sporting purple in support of their sister and daughter, Meisyn. | Photo by Kirsten Murdoch
The Ellison family sporting purple in support of their sister and daughter, Meisyn. | Photo by Kirsten Murdoch
IRON COUNTY – Seven-year-old Meisyn Ellison is in first grade at Gateway Preparatory Academy. She wants purple sparkly nails, to go to Disneyland, her own iPod and a pet hamster.

From this description Meisyn sounds like an ordinary first grade girl. However, there are many things that set her apart from other children.

When Meisyn was 8 months old she was left in a stroller along with $6 and some formula on the streets in China. She spent the first six years of her life in an orphanage before she was adopted by the Ellison family in 2012. She has never been able to walk due to reasons unknown prior to her adoption.

“When we adopted her a year ago, we didn’t know she had a neuromuscular condition,” Meisyn’s mother Stefani Ellison said. “So this was all unanticipated for us, that we would be going through what we are now.”

After several tests, doctors concluded that Meisyn has a very rare and degenerative form of Spinal Muscular Atrophy.

“In her case, her nerves are degenerating. The nerves can no longer carry instructions from the brain to the muscles, thus the muscles atrophy,” Stefani said in her blog titled “Messages from Meisyn.”

She said Meisyn has severe scoliosis and weak core muscles, which make it hard for her to sit up.

“She knows that she’s getting weaker, that she won’t be able to do lots of things,” Stefani said. “But she wants to see the (Disney) princesses.”

Stefani suggested Meisyn write down a list of all of the things she wants to do over the summer. They call it her “sand bucket list” and it includes items previously listed as well as getting a sparkly ring, flying with fairies and helping zoo animals.

When members of the community found out about Meisyn’s list they were supportive and wanted to help fulfill her desires.

Ginger Healy and Kristen Murdoch in particular arranged for Meisyn to have a party with the princesses she so badly wanted to see.

“They said, ‘We’ve got a tea party planned for you, just show up,’” Stefani said. “And there were cute college girls dressed in costume that came and they had a party.”

After hearing about the Disney Princess party, other community members stepped forward and wanted to know about ways they could also contribute to completing the sand bucket list.

“So two hamsters are arriving because she wanted a hamster,” Stefani said.

She explained that IHOP will be having a fundraiser for her daughter.

“People have offered so much just hearing her story,” she said. “She just leaves sunshine wherever she goes. I don’t think it’s her purpose to be healed, it’s her purpose to be free, and she’s here to teach.”

Meisyn is one of 12 children adopted by the Ellison family. Stefani Ellison has been the adoption coordinator for Children’s House International, the Chinese Waiting Child Program, for 18 years and is mother figure to 17 people, ages 2 to 33.

Read more: Iron County Today - Community steps up to help complete sand bucket list

Tuesday, June 18, 2013

Blessings In Disguise

I   may learn slowing and stubbornly but I am learning.  Today it was confirmed that another sweet little girl I love recently adopted from China also has SMA.  These little letters are full of such   devastation.  There is no cure.  No transplant possibilities.  No escaping these ugly claws of deterioration.  Meisyn is a life changing teacher.  She has taught me that death is like going into another room.  We won’t fear death itself but we will mourn the separation that death brings us.

Three weeks ago, Meisyn’s life long friend and orphanage brother Zane died unexpectedly.  The things I have learned, felt and witnessed these last few weeks have confirmed to me that there is a purpose, a power, and a peace that is being made manifest through Zane’s life and his death.  I believe that while Zane was in his coma, he had the choice to stay or to go.  Perhaps feeling the fullness of his whole body for the first time ever, he didn’t want to return to the broken one he had been born with.  This I can certainly understand.

Meisyn will also make these choices.  It is HER life.  HER decision when that time comes.  I will not want it.  I will fight for more physical time with my child.  But I will follow the purpose that is in her life.  If it is not to be healed than I am confident it is to heal us.  She tells me about her closeness to Jesus and her desire to run to Him.  She knows there will be more glory for her even beyond this world.

It is not that we are giving up.  We are giving upward.  We are not letting go but we will be loving through.  Why it has to be this way?  I do not know nor understand but I am being taught that someday I will.

I went searching for solace and a single thread of understanding one night and I stumbled across this song by Laura Story called "Blessings"   I was taught and my heart embraced this truth
'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Praying for Teresa

We have been praying for Teresa for nearly 3 years.  She was adopted from China with a complicated and badly broken heart.  She has fought for life from the moment she was born and continues to fight.  Last night she received her long prayed for heart transplant.  Right now she is battling.  Both heart ventricles have failed and she is on life support.  They are talking of yet another new heart.
Teresa wore her princess gown and tiara into the operating room.  She made sure the nurse came back to give her mother a message which was, "Tell my mother I love her more".  What is she being taught this very minute as she hovers between life and death?  I am certain she is not alone in either world and that choices are being made and sacred things being made manifest.  

Sunday, June 16, 2013

Meisyn starts a book

On the road to authorship.  It brings smiles from Mama.  You too?

SMA ravages the inside and the outside

This is what Spinal Muscular Atrophy (SMA) looks like up close and painfully personal.
 The inside ....
Ravages the outside.
Its not just the spine affected but everything caving in the back bulges out the front.
Her swim bottoms are size 18 months.
Do her skeletal thighs and calves not make you weep? 
They do me.

Wednesday, June 12, 2013

Meisyn needs an MRI

So the medical mysteries continue.  We had a wonderful wedding on June 8th and when we get the pictures from the photographer I will post.  Meisyn looked completely divine in her white gown.   ("A dress is the word for cute things but a GOWN is an extra, super special dress" according to Meisyn)

But today we are back in the real world.  Meisyn has more medical issues that need more figuring out.  We have taken a unexpected trip to Primary Children's Medical Center to see her specialist.  She had another panic attack and feels stinging at the base of her spine.  Its like she is being stung by bees.  She will have xrays tomorrow and hopefully they can get us in to the sedated MRI on Friday so we don't have to come back up.  Its a four hour drive each way for us.  Good thing we have such wonderful friends and family who take us wanderers in.  They want to rule out a tethered cord.  I think it is likely that her nerves which already can't listen and obey the signals of the brain, are doing their own thing and basically wigging out.  Hopefully an MRI can give us some direction as Meisyn has no textbook to follow.  We are making a new road as we walk it.

I do have to say that I so appreciate the spring.  The flowers, the mountains blanketed in green, and the rustle of the leaves make my heart lighter. I so dreaded the winter.  But spring did come.  A promise of new life is here.  So is Meisyn.

I am posting something I wrote when I was in much more denial.  I am learning to enjoy and live each and every minute.  Meisyn is teaching me this.

Sunday, September 23, 2012


Typically autumn has been my favorite time of year. The visual change in the living preparing for winter slumber, the crispness of the air cooling my cheeks, the coming of early dark, all give me comfort and make me want to burrow in and create of place of coziness.

Not this year. As each leaf changes its color, in the garden of serenity I have planted and nurtured through the late frosts of spring and the blazing desert heat, I am filled with panic. I have an overwhelming desire to collect each leaf and blossom that falls and return it to its perch. I am not ready for winter. In place of the joy and feeling of abundance I usually feel this time of year, I feel dread. I am not ready for winter. Even with the knowledge that...spring WILL come...the cycle of life will will return. I am not ready for winter.

Why?? Why this overwhelming meloncholy? Perhaps it is a symbol of my tremendous struggle with Meisyn's condition. I am not ready for her body's winter. I am not ready for her earthly slumber, for the coldness of her cheeks, for the darkness of the huge hole that will nearly collapse my heart.

I am not ready for the princess crowns that will be exchanged for angel wings.
Its so much for me to carry. I thought I had worked through all this conflict as I traveled the grieving process for Ammon's path. But, I clearly see I am not ready for his quirky, love filled soul to leave me either. I am not ready for the storms that must preceed my rainbows. I am not ready for winter.
The other day huge rain clouds gathered and the thunder roared and shook the house. Meisyn shrieked out with anxiety. Ammon quickly comforted, "Otay Meisyn. Wainbow comin'". Where is my faith that the rainbows ARE coming? All I can feel is the foreboding of the devastating storm.

I follow another mother's blog who travels the same broken road that I am on. I will borrow from a post she shared this week. I am trying to get to this point but I am having such a struggle.

"Why would I want to allow the enemy to steal joy from today through my fears of tomorrow? God will already be there when and IF I arrive! If I carry tomorrow's burden of pain today, will it make the burden lighter tomorrow? Obviously not! But Christ will be there tomorrow to help me carry it! So, for today.... I will choose JOY instead! "