LROhana Magic

Dear Life,

What makes a FAMILY?
The traditional definition of family are parents who love, care for and provide for their children. 
This definition is important and essential.
But there is another version of family that I want to talk about today.
There is a family built from community.  
A community that came about because one young man was injured doing what he loved the most. 
Jesse Billauer was 17 years old and headed towards becoming a pro surfer when he hit a sand bar surfing.
He became paralyzed instantly and his life changed.
He decided that becoming a paraplegic wasn't going to stop him from continuing to enjoy life and that was how 
LIFE ROLLS ON began.
For the last four years, Kumaka has been blessed to participate in "They Will Surf Again" events in Huntington Beach and La Jolla California 
as well as tear it up at the Venice skate park at the "They Will Skate Again" events.  
Kumaka has learned so much from participating in these events.
He has become more independent, more willing to try things, knowing that he is ABLE to.



At the "They Will Skate Again" Event in Venice, California 2015 after landing his first rail attempt 










But he also has a very special relationship with Jesse and Sam and all of the volunteers that have helped him over the years.  






Jesse Billauer and Kumaka at "They Will Skate Again" 2015





This year his daddy couldn't come to the La Jolla event.
That was the first time his daddy couldn't be out surfing with him.
He literally cried for two days.
He didn't want to go.
He didn't want to surf.
I had to promise him that I wouldn't make him surf without his daddy.
The day came and all of Kumaka's friends were so excited to surf.
But he wasn't.  He was sad.

Sam Billauer, Jesse's beautiful and amazing wife talked to Kumaka a few times trying to change his mind.  (By the way....she is putting out fires all day to keep the whole day running smoothly....so the fact that she spent time on Kumaka to try to get him to surf shows how much she loves these kids)





Sam Billauer and Kumaka at "They Will Surf Again" La Jolla, California 2015

Later on, Cory, Kumaka's fearless Red Team captain, the man who has surfed with Kumaka every single time he's surfed took a few minutes to talk to him.  
He got him in the water to swim and then all of a sudden Kumaka was ready to surf. 


 Photo Cred: John Jefferson

Party Wave in La Jolla, California



Photo Cred: John Jefferson
Kumaka had the best time surfing with two of his friends.
Cory's son even surfed with Kumaka towards the end of the session.
After Kumaka was done, he told me how happy he was he surfed and wanted to go out again.  

Photo Cred: John Jefferson

The incredible Cory and Kumaka after surfing.

That is Life Rolls On Magic. 



These amazing people take their whole day out to help create magic.


This year, Kumaka's sister Sofi surfed for the first time. 
In Huntington Beach, our hometown, our sweet Bulgarian princess SURFED.
It was an amazing and beautiful experience.
When we watched that magical moment, we remembered where she came from.  
We remembered her first three years of life.

Three years in a crib. 
Never leaving it.
Looking at white walls.
No mommy or daddy to take care of her or love her.
No family.
She was free.....free 
from that past as she was held up by Cory.


He sat her in front of him on the surfboard because she can't lay on her stomach happily.
The minute he took off on a wave, she squealed with delight and her smile lit up the ocean.  

Photo Cred: Jerry Jaramillo

I'm sure God was looking down on that miracle moment and 
smiled.
She caught four waves that day.

Our little Bulgarian princess is now a mermaid. 

Photo Cred: Anthony Manliguez

From the orphanage in Bulgaria to the OCEAN in California.

That is Life Rolls On Magic.

That is LROhana 

{Ohana means Family in Hawaiian}

From the Jensen Ohana to the Billauer Family and all of the LRO volunteers and sponsors....thank you for an amazing year and thank you for making MAGIC.

Photo Cred: Anthony Manliguez

and a Bulgarian Princess

A Confession

Dear Life,


When I went to church for the first time with Sofi, I got my feelings hurt.  People didn't know what to do with her, what class she should go to, what to think. I mean, she was so teeny tiny, she didn't look like a five year old, she was like a baby.  

 I went into fight mode.  This was my baby we were talking about.    I spoke with our bishop expressing my frustration.  Then I took a minute and realized I needed to TEACH people what to do, not ASSUME they know what to do when they see children that are disabled.  I live with disability day in and day out.  Most people don't.  I forgot that.  I was not being fair to those in our church.  For that, I am so sorry.  I took my sweet girl into Relief Society, dressed in her prettiest dress with her hair as perfect as could be, and introduced her to the women. 

 I shared her story.  And with tears in my eyes I asked them to please consider taking turns with her so that I could go to class.  I needed spiritual edification more than ever.  The sisters were amazing.  They got lists together and every week people took turns taking her to primary.  I have since communicated with the Primary President to talk about the best placement for Sofi.  Talking together, sharing what works and what doesn't, and putting aside my very tender heart to be able to not get my feelings hurt but hear what people are actually saying really helped me resolve our issue.  Since then, our church has put a great article about how to reach out to those with disabilities.  I love this article so much and it's applicable to so many areas.  It's called "Reaching Out to Those with Disabilities-And Their Families" in the February 2015 issue of the Ensign.    Please take a few minutes to read it.  Its opened my eyes and touched my heart.  It can be applied outside of a church environment as well.  Be a friend, take the time to listen, be understanding.  Parents of children or caretakers of adults that have disabilities are often exhausted, and don't realize that they need to take the time to explain what their life is like.  I am so thankful for Sofi.  She is such a bright light in our family.  And we are so thankful to everyone who has taken the time to spend an hour with her, to sing with her, to ask how she's doing.  

Hope

Dear Life,

When I met Sofi a year ago, I was so sad to see how very tiny she was. I didn't know at the time, but she only weighed 20 pounds at 4 years old. When I held her, she was so stiff, and she would arch her back because she was unused to someone holding her.  I didn't see any of that, I just saw her beautiful brown eyes and gorgeous smile. These pictures were from my visit. I wasn't allowed to share her face then. But look at her tiny fingers. 

I really had no idea what to expect when we brought her home. I knew that I fell in love even before that visit. That was enough. 

When I brought her home, my husband and my boys fell under her spell. They adored her. 

She was so fair, and so tiny. She didn't reach for anything, she really didn't do much. Oh but her smile lit up my world. This photo by Chelsea Abinante Photography shows a brand  new to America Sofi. She wouldn't even look at the camera. 

Isn't my family beautiful? I love them all so much. This photo is a few months later courtesy of Pics by Presley. She's smiling even more but still quite the photography challenge. 

Over the summer, Joanna Penney took this photo of her. A much more aware face.  She is so beautiful. We love her so. 

 

This was last weekend prior to the  surgery to place a Gtube in. She's looking at me and laughing.  She was playing with the hanging toy. She is now engaged in life around her. 

 This was from today. A day out of the hospital and already living it up at the beach. And already, both Stuart and I can tell a profound change in her. She has been tolerating her feeds, eating per mouth three times a day and has a GTube feeding 4 times a day. She is FULL. She is happy. She tracks with her eyes better. She has a lightness about her.  She holds her head up

more. It's amazing. 

I didn't want surgery for her, but thankful that this was available for her and it's helping her. Thankful for the team at CHOC Children's that have really been an amazing advocate for her and have kept her history at the forefront of their minds as they map out her health care. 

I think back, at the sweet little angel who didn't even have the strength or knowledge to raise her hands to play with toys much less hold up her head, and am SO grateful, eternally grateful for each and every one of you.  Children like her are really considered worthless in her country. Their lives are a burden to the community. They aren't given enough food to sustain themselves and sometimes they are stuck in deplorable conditions. Because we were crazy, we saw a future for one of these children, and we went out on a limb, Sofi now has a family. Because of all of you we are watching our daughter bloom right before our eyes. I can't wait to see what she will become. 

Steps to Sofi....Asya's story part 4

You can read the prior posts HERE:

Part 1
Part 2
Part 3

I am reposting my visit....because I said it best in October. 

Dear Life,

Two weeks ago, my life became a dream.

I left my comfort zone, my family, my country, to go on an adventure.

An adventure that has left my heart forever changed.

I flew to Amsterdam, ran through that airport, boarded another plane and landed in Eastern Europe.

The next day, we took a bus for 6 hours.

And ended up in another world.

A world where all the women are tiny, dressed beautifully, and walk everywhere.

A world where there are beautiful, old buildings in the centre of town.

A world where people stroll, talk, and eat in the centre of town.

A world where a part of my heart was snatched by a small, brown eyed, brown haired beautiful girl.

On Monday, I was so nervous.

What if she didn't like me?

What if she didn't respond at all?

What if she wouldn't let me touch her at all?

What if ...what if...what if.

When we went to the orphanage, I had knots in my stomach and shaking hands.

I was introduced to the orphanage director who was so very sweet.

And then....they brought Sofi in.

Tears rolled down my face as I finally was able to see her after 14 months of guessing what she would look like.

I touched her hand softly, and was so happy when she smiled when I talked to her.

Then they asked me if  I wanted to hold her.

"I'm allowed?"

For some reason I thought I would have to gradually work towards holding her.

They handed her to me and I pulled her into the biggest hug.

I touched her beautiful, curly hair, and I talked to her.

I played with her.

And I reveled in her smiles.

They were frequent.

All of my fears went away.

She is so beautiful.

Her eyes are HUGE and her eyelashes are impossibly long.

Her hair is thick and curly.

And her smile is much like Kumaka's, it lights up the room.

She is a favorite in the orphanage.

For that, I am grateful....I can tell that she will be well attended to until we go back to bring her home.

I was able to feed her.

And I hugged her and kissed her for five days straight.

The days became routine, get up, eat breakfast, have the best hot chocolate in the world, get a cab and go visit my girl.

Play with her, feed her, play with her again, leave so she can nap and we could eat lunch.

We would get lunch in the centre, eating outside, watching people and talking.

Then we would go back, I would play with Sofi, feed her a snack, and leave her for the day.

I learned that she liked to be tickled.

I learned that she loves music.

I learned that she loved her daddy's voice.

I learned that she has a ready smile, an adorable giggle, and untamable hair.

I learned that she loved me....when by the fifth day she purposefully rubbed my arm and kissed my hand repeatedly.

Those precious days were a dream.

And then Friday came.

That day was more somber.

I drank my hot chocolate in silence.

I looked over at the buildings and knew I wouldn't see them again for awhile.

I watched the people walking by, envious that they would still be in the same town that my girl lives in and I would be halfway around the world.

I didn't put mascara on that day. I knew that would be futile.

We took the cab, went into the orphanage for the last time.

I held her close and whispered a story about a little princess named Sofi.

I told her that Princess Sofi has a new mommy, that came to visit her.

But before Princess Sofi gets to go home for good, her new mommy had to take care of more paperwork.

I told her about her daddy, the strongest, most loving man in the land.

I told her about her five big brothers, and how much they love her and are waiting for her to come home.

I told her to remember how much I loved her.

And my tears rolled down my face as I told her to remember these hugs and don't forget her mommy.

And when I had to hand her  back to the orphanage director, a piece of my heart fractured.

And that piece stayed in that orphanage with that little girl.

When we got on the bus, my tears rolled down.

I said goodbye to that town, and a see you soon to my girl.

When I close my eyes, I relive that week.

I imagine the hell she lived in for two years.

The first two years of her life, those formative years, were shattered for her.

She was in an orphanage that has now been thankfully shut down.

It was the stuff of nightmares.

She literally never left her crib.

For over two years.

She was never held, she never saw the sunlight.

The only time she was touched was when they changed her diaper.

And I'm sure they didn't do that very often.

She was only fed from a bottle, so she still does not know how to chew or eat whole food.

Thankfully, somehow a miracle happened

She was moved after two years to the orphanage she is at now.

There are only 7 children there, and the change in her has been drastic.

The director told me that when Sofi came to them, she couldn't even move her arms or legs.

She told me that she was tiny.

They taught her to eat mashed food from a spoon.

They held her.

They let her out of her bed to play.

They taught her to laugh.

I have so much love and gratitude for these people, who have saved my girl.

I will never be able to express how grateful I am

One word....love

Dear Life,

It's been awhile.

The face we fell in love with

Life has been turned upside down for us.

Our girl is finally home!

"Gotcha Day", February 16, 2014

The boys (minus the one parking the car) waiting for their sister at LAX

(Photo cred: Julie Presley)

Daddy meeting his daughter

(Photo cred: Julie Presley)

Kumaka holding Sofi's hand for the first time (she's looking at him like "Oh no, I'm in trouble")

(Photo cred: Julie Presley)

She is amazingly, wonderfully perfect.

Gazing at her...in awe.

(Photo cred: Julie Presley)

Her spirit shines through whenever she graces us with her smile.

She can be silly.


She can be sad (usually when she's hungry).


But she's perfectly made and amazingly perfect.


The first week she came home, as I contemplated this whirlwind we call "Stepping With Sofi" (also known as "Steps to Sofi"), I was given a confirmation that felt like God whispering to me "This is right.  You have done what I have asked.  She is with her family now.  Thank you"  Tears coursed down my face when I realized to the core of my body that adopting Sofi was something that was absolutely something that God wanted us to do.  It's hard to describe that kind of emotion.

(Photo cred: Julie Presley)

Watching my husband love on this sweet angel, my heart melts into a puddle on the floor.

Watching every single one of my boys hold her with adoration and do their very best to make her smile gives me peace.  She is the glue that bonds our family that we didn't even know we needed.  This tiny, 5 year old angel holds so much power in her hands, her sweet smile, her beautiful brown eyes.  

As we have been with her for a month, and seen some specialists, things have been brought to our attention, and some realities we never thought we would have to face are here.  Things that are hard...extremely hard.

Sofi does not have Spina Bifida.
She in fact has severe Cerebral Palsy.
She had a lesion in her head at birth that was maybe corrected (we are awaiting an MRI to see what is going on in that sweet head of hers)
She had hydrocephalus and now has a shunt.
There are many things that most likely will not change for our sweet girl, no matter how much therapy she has.
Honestly, these words have been hard to hear, and are even harder to write.
Make no mistake, she will have the best medical care we can give her.
We don't expect changes, but when miracles happen, we will rejoice. 


We have cried many tears in the last few weeks, knowing that her path is not the path we expected.
We have humbled ourselves, and asked God, "what is Your plan, because this was not mine".  

We came to a very important realization.  

Sofi came to our family because of love.
The first component of family is love.

Because of the many people that have loved our family, and this sweet girl, she has a mommy, daddy and five brothers.
But more importantly, our family is learning about love from a pure source....our sweet daughter.



Adoption is not perfect.

Adoption is so worth it.

She is not perfect in body...but her spirit is perfect as it shines through her eyes.  

(Photo cred: Chelsea Abinante)

We are blessed to call her daughter.  We can only pray to live up to her example of strength, perseverance, and love.

(Photo cred: Julie Presley)

Miracles

Dear Life,

Do you believe in miracles?  
I do.
I have for years.
First watching "Little" (Kumaka) as he navigates boy hood full force.

Remembering the baby years....the multiple shunt revisions...the casts for months on end (that lasted for years)...the surgery after surgery to correct feet....and then hips....and then broken bones....the ongoing infections.

I never in a million years would have imagined Kumaka to be this active....this happy....this....BOY LIKE.  

There is not a "can't do" moment....it's a how can I attitude. 

The last few years have been truly miraculous to watch and given us much joy.

Then, we embarked on the adoption journey.

Did we have the necessary funding in our account just waiting?
No.
But Sofi was waiting.
And we determined that she would wait no more for someone to be her family.
We fell in love with her....and decided that we would do whatever it took to bring her home.

And we did.
Everything we could think of.
Cupcake days, shoe drives, clothing drives, pizza days, jewelry giveaways, TV Raffles, Helmet Raffles, etc etc etc.

We have driven to Los Angeles more times than we can count to get paperwork taken care of.  We have cried, laughed, and prayed harder than ever.

And then our court date happened.

We didn't get a "Now she's yours moment".
We got a continuance.
We needed current fingerprint clearances from the FBI.  
At the time we needed them, our government was shut down. So we got state clearances and prayed they would work.
They didn't.

SO....the day we had court and didn't pass, Stuart and I rushed to the police station to get our fingerprints done.  I then rushed to get money orders and had them sent next day to the FBI.  

When I knew the received them I called to beg for them to expedite.  
Normally fingerprint clearances take 6-8 weeks.
I didn't have that kind of time.
We begged, my agency begged, and we found someone to do them.
They sent them out on December 24th.

BUT they sent them to the wrong place.
So yesterday and today we have been in a panic trying to figure what to do.
Right when my  head bowed, and my tears flowed, because Sofi's fate was to be put in the hands of the judge....again...
God stepped in.
The documents were found.  My money orders were found.
The State Department is helping us by expediting our paperwork.  
They will get there in time.
By a hair.  
That's all we need.

Yes, I believe in miracles.  
I believe in people.
Because throughout this journey, I have witnessed the goodness of people all over this world.  

I am a better person because of this journey.

Miracles are real.  
You just have to believe.

 

Gratitude

Dear Life,

As Thanksgiving draws near, I have been thinking about my family.
I have been thinking about my children.
I have been thinking about how very grateful I am that we live in a free country, with the knowledge we have and the medical advances our medical teams have.
I have been thinking how very grateful I am that we are allowed to make choices.
The choice to keep a child that was born with extras.
The choice to teach that child that he or she can do whatever they want to do in life.
The choice to teach them to dream.

I am thankful for all of those people who helped our little man last year.
Those that supported him, visited him, read to him, walked with him, and loved him.
By the end of the year last year, we felt so much support and love, and we knew that although he was not out of the woods with his hips and leg, he would be ok.
We knew that somehow, we had to give back.
We had to find a way to help another child.
A child that needs a family.
A child that had no hope.
A child that had no dreams.

I am thankful for Sofi.
When we looked at her picture, looked in her eyes and into her soul,
We knew that we could take care of this child.
We knew that we could be her family.
We knew that we could give her hope.
We knew that we could show her how to dream.

I am thankful for our caseworker.
When we told her we wanted to adopt, she told us we could do it.
When we told her we didn't know how we would fund it, she told us we could fundraise.
So we did.
We told Sofi's story.
Over and over and over again.
We have written, shared, cried, laughed and been amazed.
We have collected shoes, clothing, had pizza nights, picture days, cupcake days, Ruby's days, jewelry fundraisers, you name it and we've done it.  (Except garage sales.  I hate garage sales)
We have raised over $25,000.

I am thankful for you.
You have listened to us write about Sofi.
You have cried with us.
You have shared our words.
You have participated in our fundraisers.
You have loved this girl as we do.
You have given.
And given again.
Because of you, I got to visit her in October.
Because of you, she will be home in January.
Because of you, there will be one less orphan.
Because of you, she will have a family.
Because of you she will have hope.
Because of you she can dream.

There will never be enough words to thank those that have been a part of this story.
Sofi's story.
She is almost here.
We are so close.
We are $750 away from being fully funded with our agency.
Then we only need a few thousand more to fly over and bring her home.
Our flights are paid for, we just need to pay for hers, for her medical clearances, the driver to pick her up (she is six hours from the capitol) and then she will be here.

Consider helping us finish this.
Consider giving one more time.
Consider Sofi coming home in Januaray.
Consider her safe.
Consider her loved.
Consider you....a part of her.

Thank you.