Friday, October 10, 2014

The Love Dare Day 8

The Love Dare
Day 8

"Love is as strong as death; it's jealousy as unyielding as the grave.  It burns like blazing fire."  Song of Solomon 8:6

I am so thankful that Tausha put together this challenge and is allowing me to participate.  I think this is a particularly difficult challenge because you have to come clean about  your own shortcomings.  No one wants to admit to being jealous!  So...here goes!

I love my husband to pieces.  He is my best friend, my lover, my soul mate.  In a week we will celebrate 20 years of marriage. 



 Almost half of my life I've been married!  We've had some amazing highs, and some really challenging lows.  Each one of our children has been a blessing to us.  Finding out that our youngest son was going to be born with a disability we knew nothing about was frightening and really one of the hardest things we have ever faced as parents.  It also made us stronger.  Strong enough to adopt little Ms. Sofi.  Our family now consists of five boys and one girl.  Two of these sweet kiddos has extras.  As a stay at home mom, there are times I sit at home, after changing what feels like the thirtieth diaper of the day, not having showered or looking glamorous for what feels like years, and I can't muster the enthusiasm to praise my husband for something he's done at work.  As a matter of fact, I am guilty of not wanting to hear about his day; of being jealous of the yummy lunch he ate in his meeting or the tickets he received to watch a game with one of the boys.  For a long time, I never understood the need to spend two hours in the ocean surfing...I was jealous of that time he spent away from me.  

Let's face it, relationships take work.  If you are not careful, envy and jealousy can destroy love.  Part of the reason that I wanted to join in the Love Dare is so I can put my relationship with Stuart first, before anything.  Our marriage is so important to me, eternally so.  It's time that I help US find US and strengthen that bond.  

Day 8 dare is to be your spouse's biggest fan!  Reject any thoughts of jealousy. To help you set your heart on your spouse and focus on their achievements take yesterdays list of negative attributes and discreetly burn it.  Then share with your partner how proud you are of a success or blessing he/she recently enjoyed. 


 LOVE is the most important thing in the world.    









Wednesday, October 8, 2014

Be the Change

Dear Life,

Now that we've talked about Spreading Sunshine (See post before this one), lets talk about Being the Change.

This summer, we attended a skate event called "Skate for a Cause" hosted by The Sheckler Foundation.  We were there to support our friend Madison with Peach's Neet Feet.

 It was so exciting to see so many skaters out there having fun doing what they do and raising money to help organizations like Peach's Neet Feet dream bigger and do more in the communities they serve.

The next day our family was able to be there to support a few of our friends when they received their new Peach's Neet Feet shoes delivered by some of the skaters on the board of The Sheckler Foundation.  It was beautiful to see our new friends meet these skate legends and get to spend some time with them.  

A few of the kids, Kumaka included, was able to skate that day.  There are a few pictures that I want to share because I was really touched by the symbolism of the moment.  

In this series of pictures you will see some things.

A professional skater.
A boy in a wheelchair.
A father.
A large ramp.















What do you see?

A professional skater?
A father?
A boy in a wheelchair?
A large ramp?

I saw all of those things too.
This is what else I saw.

A father trusting that young man up there to catch his son.
A boy in a wheelchair wanting to skate like every other kid.
A professional skater reaching out to that boy and giving him a hand.

In one arm, Ryan was holding one of my biggest treasures, the other he held his wheelchair.

He settled him in, gave him some tips and off Kumaka went.  

He made it down that ramp.

And Ryan Sheckler was the change. 

I'm not sure that Ryan realizes how symbolic this series of pictures is.

I'm not sure he realizes that THIS is how you "Be The Change".

Physically changing something for the better.  

Kumaka had a wonderful time that day.

Not because he was hanging out with Ryan Sheckler.

But because a skater took the time to reach up his hand and help him out.  


Please take the time to visit The Sheckler Foundation website and support their mission.  They are doing amazing things in the community.




Tuesday, October 7, 2014

Spreading Sunshine


Dear Life,

How do you try to change the world?  
How do you spread sunshine?
How do you show kindness?

Because of a pair of shoes, a hand painted pair of shoes that Kumaka was given, we met a beautiful soul.  
Her name is Madison. 
We call her Peach. 
Photo cred by Susan Posterro

Our family has known her for a little over a year, but it really feels like we have been family forever. Madison is the president of a beautiful non profit called Peach's Neet Feet

"Madison's mission is to create a movement of Pay it Forward initiatives and selfless acts of giving.  She uses art to create custom, hand-painted shoes to celebrate children who are fighting cancer and living with disabilities." 


Through Madison, our family has grown; our outlook on life, on others, has changed.  We have new layers, new fibers to add to the ones that we weaved already.  We have met so many amazing families.  Families with varying backgrounds, dealing with different stories.  And yet we are all dealing with something in common- our warrior children.  These other stories are now woven into our hearts, and we are truly blessed for it.  Every day, we look for ways to touch others hearts, to sprinkle a bit of sunshine towards someone else, to show love, to share a Random Act of Kindness.   




Please,  take the time to visit the Peach's Neet Feet website. Read about this amazing young girl.  Read about the children she has helped, about the families that have been touched, lifted up because of her passion.  

Then think, what have you done to share kindness today?  





Sunday, September 28, 2014

Beautifully messy

Dear Life, 

Today, as we all started getting ready for church at 8:00 am (for 11:00 church) I was thinking "Yes! I got this. My daughter just got out of the hospital, and now I have to fit in not only feeding her by mouth, but feeding her via GTube as well, but we will get to church and on time!"  Kids started showering and getting ready as I first fed then did Sofis "Tubie" feeding. Time marched on but I knew we could do it. Sofi finished, I cleaned out the tubing, put water in it for her fluid hour at church, then got the princess ready. She was so cute in her denim dress, white tights with black hearts and black boots. Did her hair, put in a bow, then looked at the clock. I had 30 minutes before church started. Did I tell you we try to get there 20 minutes before so my husband can do his ushering calling and we can get seats? Yeah, enter stress. I took the fastest shower ever, picked out an outfit, and as I was putting makeup on as fast as humanly possible so I didn't scare anyone, one of my lovely boys told me to hurry up we had to go. I told him as nicely as I could that if I didn't put some makeup on my face I would scare everyone and they would leave church.  I hurried faster, put my shoes on as I ran out and off we went with four minutes to spare. By the time we walked in, church had just started. We made a commotion, what with the bright green wheelchair and big stroller and all, and then getting everyone situated. Finally, we took a breath and prepared to be spiritually fed. Once again I was feeling pretty good about myself. I hooked Sofi up to get her water over the hour long sacrament meeting and sat back and rocked her while listening. And then.....Tubie unhooked and I felt liquid on my skirt. Yeah.... Formula started pouring out of Tubie. Whispers of "clamp it.... Hurry up...it's everywhere" could be heard. I realized then that I do not have it together. And then I gave myself some grace. I was where I needed desperately to be. My children were where they needed to be. My baby is getting healthier every day (even if I get messier)  and I got to hear my son receive a beautiful setting apart in the third hour for his new calling. 

Today was great. As I reflect I realize just how beautifully messy life is. And I wouldn't have it any other way. 

The tale of the mark of the warrior


Dear Life,

One day Kumaka asked about his scars.  He has quite a few.  At least 8, if not more.   And so, I told him the tale of the warrior.



Before you are born, you are a spirit.
You are taught many things.
Once you have learned all you are supposed to,
God meets with you, and he hand picks certain choice spirits.
He sees something special in these spirits.
A certain spark, a strength, a fortitude.
He asks them if they would consider being part of a very important group of people.
The people that will teach others.
But not because they are teachers, but because their personal challenges will teach others as well as themselves.
They will teach patience, love, empathy, service, strength, humility, hope and joy.
They will also be the cause of sadness, despair, anguish.
They will be the children who face medical issues.
They will face surgeries, hospital stays, illness, invasive treatments.
They will not be able to do what everyone else does.
Some will face radiation, chemotherapy, medications that make them sick.
Some will never walk, talk, see, hear, or eat by themselves.

Some will not live as long as others.
Some will be frail, weak, sickly.
But they will have the strength of warriors, even when their parents are spent.
They will have the courage of lions, protecting their pride.
They will smile, and the heavens will open up and shine down.
They will cry, and then smile the next moment.
They will wipe their mothers tears,  and make a joke to make their father smile.

These special spirits are sent down to do a mighty work.
And they know what they will be going through.
They know they will be facing challenges beyond comprehension.


This is when I told Kumaka that he was one of those spirits.
He knew what his journey would be like.
And he raised his hand, he chose that path.
Because he is special.
And all of those scars are the mark of the warrior.
They are reminders of his strength and courage.
They are our reminders too.





Saturday, September 27, 2014

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. 

Friday, May 30, 2014

Witnessing miracles


Dear Life,

I know I've been telling you all about Sofi's story, but I have something in my heart I want to share.

8 years ago in July we went for an ultrasound to find out if our baby was going to be a boy or a girl.

We left the hospital in a daze, with tears rolling down our cheeks and horror in our hearts.
Tears because our perfect little baby was diagnosed with a neural tube defect called Spina Bifida, Hydrocephalus, and bilateral club feet.
Horror because we were told one of our options was to terminate.
Our appointment was on a Friday, and the radiologist wouldn't even explain what the diagnosis meant. He said we would have to wait until we saw our OB. I called her office immediately but she was gone for the weekend.
How were we supposed to go forward without knowledge?
We went home to our boys, who clamored to find out if they were having a brother or a sister. We took them to the pool, told them they would be having another brother, but he was going to have health problems.
The rest of the weekend was a blur...
Monday we met with our OB.
She explained what Spina Bifida was in greater detail and reiterated our option to terminate.
We forcefully told her we would not be doing so.
We were told our son could be retarded (their words), might not walk, might have learning difficulties and his quality of life would be bad and there was a possibility of death.
We wanted our son.
We lived through that summer and fall somehow, searching for hope.
8 years ago, there were no blogs, no Facebook, no groups.
We found graphic and rather frightening pictures that scared us to death.
When Kumaka was born, he had major surgery to close his back and place a shunt.


For 4 years, he struggled with various health issues and surgeries.



He had such an amazing spirit. His smile was so beautiful and he was always happy.

Even in the hospital, he would thank the nurses after putting in an IV ( with tears in his eyes).

He was a fighter.
A warrior.




And once his health got better, he was given the gift of a special WCMX wheelchair.

He learned how to go to skateparks and shred with the skaters.

He learned how to play wheelchair sports.

He wheeled his first 5 K.


He surfed.

He became an athlete.

He became a student.

He is now reading.
And sharing his joy of life with his friends.

























Looking back eight years ago, we never ever thought our son would do one of the things he is doing.
And he is in good company. Within his circle of friends, there is an author, a cover model, an actor, an actress, athletes of all kinds, an aspiring swimmer, a dancer..... And the list goes on.
These children are all AMAZING.
Every day there is a new story being told....
Many parents were told to terminate.
Thank goodness they didn't listen.