The questions

Dear Life,

The past year has been quite tumultuous.  
I mean, we have five boys....how could it not be.
And then...the wacky people that we are...decided it would be a great idea to bring one more child into our crazy life.
We've been asked these two questions a lot:

WHY?
and  
HOW?

Why? 
Because once we started asking about adoption, questioning the process, once we saw those brown eyes, we knew we had to.
She had no one else.
Not one other family had ever requested her file.
We were all she had.
And she had our heart from that first scroll down the page...the first moment we saw her.
Our hearts were hers.
Because we know how to love a child.
Because we know how to care for a child with Spina Bifida.
Because we are asked to care for the orphaned.
Because we can.
And maybe the better question is  WHY NOT?

How?
Bringing her would be a challenge.
That we knew.
We told our facilitator that we did not have the money needed to fund an adoption.
She told us we could fundraise and then ask for grants.
We thought about it.
And we knew we could do it...and we would do it for Sofi.
So we thought, we prayed, and we thought some more.
We thought of many ways we could raise money.
People thought of ways for us.
We prayed, cried, and asked.
We have been able to come up with everything as needed.
We have tried things, some worked some didn't and some were wildly successful.
Ultimately, we have felt love, support and friendship in the journey.
How you ask?
With God's grace, His hand in all we do, His comfort when it's hard, His strength to get back up when we are down, and His love reminding us why.

Grateful for this journey...grateful for the hundreds of people that are holding our hands and helping us forward....grateful to a loving Heavenly Father who is watching over us and smiling down.

Going on a Jet Plane

Dear Life,

I have been checking my email twenty times a day for months now.

Waiting.

There are many emails there...but never the one I want.

I continued to check.

Waiting.

I check first thing in the morning...and I check at midnight before I go to sleep.

Waiting.

Today was different.

I checked my email this morning.

And it was there.

The one.

The wait is over.

We have a referral.



What does that mean?

It means Sofi's country is saying yes.

You are okay people...

And you may come to visit her.

It means dates.

We will be picking dates in the next few days.

It means weeks.

In weeks we will be visiting her for the first time.



September

In September my friend and I are going to visit her for a week.

For five days I will get to hold her, play with her, talk to her, read to her, and take her for walks.

For five days I will get to gaze at her face and try to remember every nuance.

For five days my friend will take as many pictures as she can so I don't forget a moment.

For five days I will be in heaven.

And on the sixth day I will be torn in half again.

I will have to leave her.



For now, we are focusing on that moment we fly across the world...to meet this beautiful girl that spoke to our hearts through the computer screen.

We have come far.

We have eaten cupcakes.

We have eaten pizza.

We have sold raffle tickets for a hand made pendant.

We have sold owls.

We have counted shoes.

A lot of shoes.

We have collected clothing.

We have begged, pleaded, and cried...fundraising for this little girl.


You all have not left us stranded.

You all have helped us every step of the way.

We are asking for your help again.

We are needing to pay for this trip...the flight alone is $1000.

Stuart is staying home to help cut on the cost of our trip, and one of my dear friends is going instead.

We are saving our pennies.

But we can't do it without you.

Here are the ways you can help.



First and foremost you can pray....pray that she stays healthy...pray that we get funded...pray that we get there safely.

Second...if you are local you can donate used clothing, bedding, belts, purses, backpacks duffel bags, and curtains.

Third....you can sponsor puzzle pieces.  There are two...one is to win a Kindle Fire $3 each piece...and the other is for two 1 day Disneyland Park Hopper tickets for $5 each. (once those are all sold we can buy our plane tickets) Please use our YouCaring site for this and mention how many tickets and which kind.

Fourth...you can click on this link  http://www.igive.com/button/ and allow it to add on to your browser (it does not download anything on your computer.  When the iGive banner comes up in the right hand corner when you are shopping, simply click it...and we will get a small percentage of your purchase.  So simple!

Fifth...you can donate straight to Sofi's YouCaring account:







We've witnessed miracles already.

Read this post for a walk down miracle lane: A miracle in shoes
We know that Sofi is supposed to come here.

Please consider helping us see miracles again.

Paper does not define him

Dear Life,

One of the catch phrases in the Spina Bifida community is Redefining Spina Bifida.  

de·fine: to determine or fix the boundaries or extent of.



When your child is born with a disability, some doctors like to keep your child in a box. 
They want to do what's the least expensive, least time consuming, least amount of work on their end.
They say "Your child won't walk; his level of damage to his spine is too high and it's just not possible.  A wheelchair is his only option."
They want to define his abilities by the diagnosis.

There are so many other factors when dealing with abilities. 
Like a child's determination to do the "impossible". 
Like a child's fierce independence.
Like a child's will.

Let's give that child a chance.
Let's give him options.
Let's see what he can do.

He might just surprise you.
He might do more than what the paper says he can.
He just might make up his own rules.

That is Redefining Spina Bifida.

Today I was speaking to Kumaka's physical therapist about what we should be doing about his walking.  I stressed to her his absolute desire to walk (which is funny because I never pushed for that...my biggest push was for him to stay healthy) and for independence.  We were talking about ways he can accomplish his desire to walk, being safe while doing so, being independent, and being as fast as little Speed Racer can go.  

And then she surprised me by saying this:
"Kumaka has taught me a lot.  He has taught me that what is on paper doesn't matter.  It's up to the child..we have to provide things for him to do based on his desire and ability to do so.  Some doctor's would push for him to just be in a wheelchair.  Cheaper, easier, done and done.  Thankfully, Dr. Rosenfelt is on board with him standing and walking.  With other doctors that might not be the case."

I am so grateful that we have a physical therapist that goes to the beyond the typical to give Kumaka the best of the best.  I am grateful to Dr. Rosenfelt and his team at CHOC for not putting Kumaka in a box.  

I am amazed daily by this boy....and how he Redefines the things on paper every day.  

Photo by: picseez

He wants to walk

Dear Life,

I have seen determination.

For six years I have seen determination.

Every day.

Determination has a name.

Kumaka.

This picture is at birth, isn't he adorable?  When we saw him, we weren't sure he would live past his first surgery...the one that closed his back and placed a shunt.  That first surgery on my six hour old baby was a very long five hours.  We expected to be in the hospital for weeks.  He came home in six days. 

Determined little baby.

At two weeks, he got his firsts casts to straighten his clubbed feet.  He had to get them changed weekly for months.  While all of that was going on, he had to learn to sit up.  

For a long time he couldn't hold up his head.  This picture is from his first Easter...he was so serious back then.  

A few months later he was able to sit up using the Bumbo...and he rocked his casts.  

Determined baby.

When he was almost one, his PT taught him to crawl.  She would place toys down and he had to learn to use one knee at a time. 



And crawl he did. His little legs looked kind of froggy at first...and for awhile he did army crawling...but eventually he got the hang of it. 

Determined little baby.




He's always liked to be fast...so we asked about a wheelchair.  The therapist said that typically the insurance doesn't want them to have chairs until they are five.  I told them he need one now. There was no way I was going to push him around in the stroller not participating in life.  Thankfully his Physical Therapist saw how determined he was and let him start out borrowing this wheelchair. He was one and a half in this picture...and LOVED wheeling.  He got his first chair at two.

Determined little toddler.



























After that he learned to step. He loved to be upright and this gave him the opportunity to kick balls.  That's one of his favorite things to do still. 




And he learned to step using a walker.  It was amazing to watch.

Determined little boy.

The first four years of his life he was able to progress and do more and more.  He seemed to always find his own way to accomplish things.  You see, his level of paralysis is T11 all the way down to the end of his spine.  Typically that means he should be paralyzed from the waist down.  He is partially paralyzed, so his level activity is higher, but unfortunately he is unable to bear his own weight.  His right leg is stronger than his left.  But that has never stopped him. He doesn't say he can't.  He doesn't act tired.  He just keeps going. 

And then last year happened.  



At the beginning of the year he had major hip surgery on both sides.  It was a twelve hour surgery and he had to have a blood transfusion the day afterwards.  It was hard.  But look at him...two days afterwards trying to give us a smile.  

Determined boy.




This is the giant green cast.  He had it twice.  The weekend he had this one taken off, he broke his femur.  And had to have a new one put on.  That was 12 weeks of crazy town.  He had further complications last year that pretty much put him out of commission for any type of Physical Therapy for the whole year. 

Two weeks ago we started with his RGO.

It's heavy.  It's hard.  We have to put him in it, be right there in case  he falls, and take him out.  He has to use a walker with it to hold himself up.  The walker he has right now in therapy is too small in the width and the sides of it get caught.  

AT. EVERY. STEP. 

Could you imagine that every step you took your leg got caught on something?  Why would you continue?  I'm not sure I would.  I'm pretty sure I would take the easy road.  NOT HIM.  The first session of PT, he struggled.  After all he hadn't walked for over a year. He forgot the movement of walking.  I wasn't sure it would even be something he could do.  But the second was way better.  He was having fun, and he was doing it.  But today blew my mind.  The therapist had to take a call from a doctor, so I stood with him while he was stepping.  I felt like I needed to hold on to him so he wouldn't fall.  He pushed my hand away and looked up at me and told me he could do it himself.  It took my breath away to hear that.  Then he stepped. and stepped. and stepped.  He figured out how to lift up the walker when it got stuck on his RGO and he figured out how to turn the walker and his RGO to go the other way.  ALL ON HIS OWN.  When the therapist came back, she was blown away too.  She told me he has always done things his way...and this is no different.  He doesn't walk the way you're supposed to with an RGO (you're supposed to lean back and swing your hips side to side).  He muscles through it using his upper body to throw his legs around.  AND HE'S FAST.  (considering he's in this crazy contraption)  But it bothers me.  This piece of equipment is not going to let him be independent walking.  He can't even get in it himself.  I am wondering how I can advocate for him to get the best piece of equipment possible for him to be independently walking.  You should have seen him...he didn't want to get out of the RGO...he was loving standing and walking and kicking the ball.  



This boy wants to walk.

In a bad way.

Is there any thing else for him?  Another piece of equipment that's lighter, that he can put on independently, that will allow him to walk when he wants to?

Because nothing stops him. 

Not even a spine that isn't formed all the way.

He does what he wants to do.




It's my job to find the tools to allow that.  God help me.  I have no idea what to do.  All I can say is thank you.  Thank you for giving this boy this huge dose of determination, courage, and strength.  He's six, but he works harder than some men I know.  And he works hard at doing things that most people just...well...do.  I can't wait to see what his life is going to be like.  What he will accomplish and who he will touch on the way.  And if any of you know an engineer, send him our way.  We need one to create a magical piece of equipment.

A teaching moment

Dear Life,

Today at Kumaka's adaptive PE camp, I was able to teach my boys something.  I realized that before this I assumed my children would somehow magically KNOW how to react to a differently abled person...whether it is physical or cognitive.  I guess because they have a brother that has extras I just figured they got it.  Today I learned that I never had a conversation with them about how to talk to a person who is cognitively delayed as I watched two of my boys interact with an older boy at the camp.  This boy is in his early twenties, I'm not sure of his diagnosis, but he has delays cognitively and thinks differently than they do.  He was talking to them on and on today and while one of my boys was doing great, looking at him in the eyes, responding to him even though this boy was talking about made up stuff that didn't really make sense, the other boy was looking down doing his best to not make eye contact and have to converse with him.  I realized at that point that my assumptions made it difficult for my son to know what to do.  When the boy walked away for a bit,  I pulled my son aside and told him that it was very important for him to know how to talk to this boy.  I told him to always look at him in the eyes, and just respond to what he was talking about.  Even though it didn't make sense, just ask questions and keep talking with what he is talking about.  It really wasn't about how my son responded...it was about him talking to him and laughing with him.  After I talked with my son, he did much better looking at this boy in the eyes, and talking with him.  He seemed less awkward and uncomfortable.  This boy was so happy to be talking to my boys... we were discussing things that didn't make any sense but he was laughing and having fun...and that is what mattered.  After he walked away, (AFTER we took a group picture), I told them they did great...and it is all about being open and talking and listening and including everyone.  

Service for Sofi

Dear Life,

Monday I was a broken down mess.  With Sofi's upcoming birthday, and the lack of any progress of any sort towards a referral for the last two months, my heart was breaking.  I wept, I prayed, and I felt like I could literally feel my heart breaking.  

I thought of my other kids birthdays over the years....
Birthday Breakfasts...
Disney Birthdays....
Birthday Cakes....
Birthday Beach Parties...
Birthday overload.

For Sofi....she got...

Another day.
Like no other.
Not a special all about me day.
Just another day in an orphanage.

My arms were aching to hold her, to whisper Happy Birthday for the first time, to sing to her and smile while she blows out the candles.

When the day actually came around, something happened.
I offered to do a little driving errand for my friend.
It was so wonderful to give back.
And then we went to Target and picked up a couple of toys for another friend who is having a toy drive in honor of her sweet boy who went to live with Jesus last year...in honor of Sofi.
We gave service for Sofi today.
And our hearts were lighter.

What a lesson learned. 
I am so grateful to my friend who called me yesterday asking me if I could run that little errand. 
My day was much lighter.

We ate cupcakes in honor of Sofi.
Next year...we'll eat cake....with Sofi.
She'll be in a princess dress.
With sparkles in her hair. 

Celebrating a birth from afar

Normally I would write Dear Life...but today is Sofi's birthday so I am writing to her.

Dear Sofi,

On July 3rd, 2009, a beautiful little girl was born. 

She was born without excitement.

She was born without celebration.

She was born and then given up.

She endured surgeries alone.

She had no one to hold her, and tell her she would be ok.

She had no one to hold her close and sing her to sleep.

She simply had no one.

For three years there was no one who enquired after her.

She lived in an orphanage...and never spoke.

She didn't play with other children.

She didn't leave her crib.

A little more than a year ago a family saw her picture.

And fell in love.

And started moving heaven and earth to bring her to live in a forever family. 

With them.

That little girl is you.

That family is us.

We are an ocean apart.

But we are celebrating your birth in our hearts.

We cry because we can't hold you, and tell you how much we love you.

But we smile through the tears because we know this will be the last year you will be alone.

We are waiting to visit you.

To tell you all about our journey to you.

To hold you and kiss you and tell you to hold on.

We are coming to bring you home.

Don't give up.

Don't you dare.

We are never giving up on you.

We love you so much Sofi.

Happy Birthday

It will be your last one alone.

Love, Mommy

For those of you wanting to know how you can help...here is what we are doing RIGHT NOW.

We made a puzzle with a picture of one of Sofi's brother's, Kekoa.   The puzzle has 252 pieces.  We are selling each piece for $3.00 each.  Kekoa chose the giveaway prize which is "Hurley Phantom Create" boardshorts.  These boardshorts are listed at $125.00.  You design them and then they will be shipped directly to you! Please consider purchasing a puzzle piece of two in honor of Sofi's birthday!  When you purchase a piece we will write your family's name on the back so she can she all of the people who helped her on her journey home.  Contact me privately and I will tell you how you can purchase pieces!