Welcome to Holland...and beyond

Dear Life,


I was given this letter from a doctor when we found out about Kumaka's diagnosis in utero.





by Emily Perl Kingsley

©1987 by Emily Perl Kingsley. 

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

via

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Below is our family's travelogue...

I was told I wasn't going to Italy as I was flying. I didn't enjoy my flight after 

that,and  I dreaded the landing. I was scared, and I was angry that I didn't get 

to go where I wanted to go. I was envious of those that were happily getting off

the plane and jet-setting through Italy having the time of their lives. Once I

landed though, I looked around and realized I could find beauty in this place.

It was not glamorous by any means, but I quickly learned that who I was with 

was more important than  where I was. I learned the language and found all

the secret roads to get  around easier. I met amazing local people who guided 

me on my way and I met amazing people getting off the plane when I did. Our 

families have toured Holland together, and done many of the same things. 

When I get lost, I look for these dear friends to guide me back to where I 

belong. I found a strength in myself and my family in Holland that Italy 

never would have given us. I found beauty, grace, and knowledge. I found an

inner peace I didn't know existed and when I was afraid of the unknown in 

Holland, I found a stronger relationship with God. Italy still sounds like fun, 

but I have found resilience in Holland, and that is something I will always be 

grateful for. I have moments of longing for Italy, but I love that I am 

vacationing in a very special place that not every person is chosen for. I am 

grateful for Holland and I wouldn't change the plane's path. Don't be afraid of 

Holland....embrace it!


Tracy

Kindness begins with....

Dear Life,


Have you ever been in a room with someone with a disability and felt awkward?
Did you stare and then look away when you got caught?
Did you purposefully avert your eyes?
Did you avoid that person?
Did you smile?
Did you say hello?




How  do you interact with people normally?
Do you ignore others in a busy waiting room?
Do you smile and say hi?
Do you stare at people?
(I am admittedly a people watcher...so I am taking myself to task!)


Having a child with a disability has opened my eyes to many things.  
I have learned that I am not tolerant when I'm cranky.
I'm usually cranky at doctor's offices.
I don't go out of my way to make people comfortable enough to say hi to me.
And I get frustrated when people stare.
And then I realize that I have been guilty of staring.
We all probably have.
It's human nature.
We are a curious people.
I know that personally, I would rather someone smile at us, and talk to Kumaka than ignore or stare without even a smile.
I love to answer questions, if they are kind and in good taste.
I love educating people about Spina Bifida and I love talking about Kumaka.
I promise to smile first, if you promise to say hi and talk to us.
I promise to be kind and answer your questions to the best of my ability.
I know Kumaka loves it when your kids come over to play, so please don't call them back to you, it hurts his feelings.
And he might  say really loudly "Mom, that guy is staring at me" to which I will say loudly "It's ok honey, wave and say hi!". 
(that happened this week)
And please...if my other kids are with me, say hi to them too!  Everyone ignores them all together because their eyes are naturally drawn to Kumaka.  My kids are pretty cute...and would love a little hello once in awhile! :)


I've realized that kindness begins with me...so I promise to do my part....


Here is our collage....I LOVE IT~

And I want to direct you to a relatively new online magazine.  It is a wealth of information....great articles and growing info about support groups, blogs, etc in your area in regards to Spina Bifida.
Faces of Spina Bifida was started by a couple of talented women.  I am blessed enough to have been asked to write for them.  YAY!  I'm so excited about this opportunity.  These women have foresight, and will help our community so much! I look forward to working with them!  

Guess Who?

Dear Life,

Guess who is a representative for Speak Now?

You're looking at her!

Here is a list of all of the wonderful representatives.

Speak Now....our voices.

What is Speak Now you're wondering.  Here is a statement from their website:

Speak Now is an organization geared towards giving voice back to young women. 

Located in lovely southern California, Speak Now gives voice to young women by participating in various localized events, is involved nationally in donation drives, and raises awareness about teenage based issues that go unresolved in most circumstances. 

When I was young my voice was not heard.  I was not able to communicate what was truly going on inside my head and in my heart.  I feel so strongly about the worth of every young woman and the importance of teaching them their strength, and the importance of their voice.  Every girl needs to know that they are special, they are beautiful, and they have a purpose.  They also need to know they are loved.  I am proud of the young lady who is the founder.  Ellie Coburn is a brave, wonderful girl who is 16 today as a matter of fact.  I am so impressed with her vision and I feel so blessed to participate.  Please go to the website and make the pledge.  

It's Friday Night

Dear Life,


So this is a face that is super excited about Friday night...

 Ok maybe it doesn't look like it, but that's only because I was trying to take a picture of myself really quick before my husband got back in the car and made fun of me. :)


And let me tell you...I needed to get out of my house and get a break from the giant green cast.  Not the boy mind you...just the cast.  So here we are....see the dimples?  That's me....excited!

Babe took me on a sweet dinner date....and then we went home.  It was only five o clock, we were done by 6:30 and that was perfect.  I was so happy to spend one quiet hour with my hubby.  I am so grateful that somehow we have figured out a way to carve out at least an hour a week to be alone.  We look forward to that time, it's where we talk shop: kids, job, schedules, and gossip.  I still enjoy every moment I get to spend with him...I mean look at him...he's one hot Hawaiian!  I'm a lucky girl!

Talents

Dear Life,


As I was growing up I had no idea what I wanted to be when I grew up.  
I flitted from job to job.

I never did become proficient at one thing.  
I feel like I have an obligation to help my boys find their "thing".
I believe that we all have gifts or talents.  
It's up to us to discover them and grow them.
I have always felt that for someone to be happy in their career they need to find what they love and do it.
So I feel compelled as the mother of boys to help them develop their gifts and talents.
Not everybody has gifts or talents that are glaring.  
Not everyone has a love for something so apparent you know what they are going to do. 
 Each and every one of my kids are so different.
I have one that is very very talented; has an amazing ear for music. 
I have one that is brilliantly smart; too smart for his own britches.
I have one very athletic boy.  He knows what he wants and he's 11.
I have one that loves drama and theater.
And I have one that I know will do whatever he wants to do.
I feel a small bit of pressure to make sure my kids find out what they are going to be great at.
Am I crazy?
Do any of you feel that way?
Are we supposed to let our kids bumble through it until they end up with whatever they end up with?
Anyone want to share thoughts?

Who am I?

Dear Life,

During my young years I struggled.
A lot.
I questioned God.
Did He exist?
I felt unloved as a child/teen.

I am the product of very young parents.  My dad was 17 and my mom barely turned 18 when she had me.
My dad had an alcohol problem.  That turned into a drug problem. He couldn't be there for me, he couldn't even get himself together.
After my parent's divorced when I was one, I didn't see my dad regularly.
Over the years my mother remarried, twice.
I never connected enough with my step fathers.
Alcohol has always been prevalent in my family.
Drugs have also been prevalent in my family.
I suffered from not having good examples to look up to in my immediate family.
I also didn't have a strong relationship with my mother; she has always worked hard to provide for her children but is not a warm and fuzzy person.
My self esteem suffered.
Was I not good enough?
What did I do to deserve this?
Am I a bad person?

By the time I graduated high school, my life was out of control.
I left my mom's house the summer I graduated.
I didn't complete my classes at the local community college.
I had a dead end job.
I had dead end boyfriends.
My life was turning into a dead end.
Dead.
Multiple times from my junior year in high school to age 20 I was in a depression.
I will admit to wanting to end the dead end.
It's scary to be that low.
To not have hope.
To not have faith.
Thankfully I was blessed with a few really amazing friends.
Friends who supported me at my lowest.
Friends who told me to pull my head out of my rear.
And then I met HIM.

He was my best friend almost immediately.
We talked constantly.
(We lived an hour away from each other....so we had to talk a lot)
I went to his house on the weekends.
We fell in love.
We had a baby.

We got married.

In that order.  But that was good. Because of Keoni, I asked Stuart about his church.  I wanted to raise my child in a church.  That was so important to me.  I knew that without having Keoni, I never would have asked about church.  Stuart was a member of the Church of Jesus Christ of Latter Day Saints  He wasn't actively going to church at that time. As  I learned about the beliefs, the standards and the beginnings of the church, Stuart relearned. I knew early on that this church is true and Stuart renewed his faith.
I had a testimony of the gospel.  I finally knew that God existed, and that He had a plan for me. ME.  There was a plan.  I was supposed to go through all of the hard stuff.  It made me who I was.  I found comfort in the gospel.  I found peace.  And one day as I was sitting in the chapel I came to an important realization.  I was NEVER alone.  God was always with me. Even at my lowest, He knew and He was there. He brought people into my life to help me get through it.  People that are still very important to me. And when my life could have spiraled into nothingness, he gave me the best gift of all.
A wonderful man, who loves me unconditionally.  A man who supports me in all that I do.   A man who is an amazingly patient father and husband.  He is a wonderful example.
And then He entrusted me with five of his special spirits.
Sometimes I doubt myself.
Okay...I doubt myself a lot.
But I know I'm not alone.
I will never be alone.
I am a daughter of God.

Not trying to get political...

Dear Life,


I don't like talking politics.  
We all have our own ideas, agenda's and goals in life.
But I hope you can take the time to read this post.  
For my family, it will be the difference between life and death.
Okay maybe not quite life or death,
But the difference between Kumaka having the CHANCE to walk...
or being FORCED to wheel.
This petition:
http://www.thepetitionsite.com/1/SaveCCS-therapy/ 


is to help ALL families receive much needed physical and occupational therapy.
Without it, the state is trying to cut the budget for therapy so that only income qualified families will receive it. 
The income threshold is VERY low.
We won't qualify.
Insurance does not cover physical therapy and occupational therapy.
Watch these videos of Kumaka to see what therapy has done for him.


First they taught him to crawl.

Without them, he wouldn't be able to crawl.


Then they started teaching him to walk.

We take these things for granted.  Remember when you taught your kids to crawl, and then walk?  You didn't need any extra devices, any trained therapist to teach them. 


Without therapy, Kumaka would be stuck in a chair.  He would have no options.  Kids like him deserve a chance.  Please take the one minute it takes to sign this petition.  Even if it doesn't affect you.  It affects more people than you know.  We appreciate it!

Wheelz

Dear Life,


Facebook.
It can be a huge timesucker.
It can cause drama.
It can also be a blessing.
For me it falls into the blessing category.
(well it can be a timesucker...but we are working on that)
I have found Facebook a great way to keep in touch with friends.
I have also found some great people within the Spina Bifida community that have been a great support and have given my family  friendship and love.
Facebook opened up a whole new world in terms of the amount of people within the Spina Bifida community.
I have also seen some awesome things...
Such as this video:

So I started following this man...because I knew he would be a great example of the "you can do anything you put your mind to" mentality.
He also happens to have Spina Bifida.

Recently I asked Aaron to post a pic of himself wearing a green shirt to support Kumaka for his collage.
He did better.
He happened to come to California this weekend.

So he came to our house.
I KNOW!!!!!

Check out his ride.  Can you believe this?
AND....he tricked it out with hand controls himself!
SO impressed!

Sorry for the blurriness...I was so excited I wasn't being a very good photographer...but he put Kumaka in his trick chair.....SOOO cool!

Wheelies...with Wheelz!
I have one word...


RAD!!

 Wheelz with the boys....sorry honey..I was so excited I wasn't even paying attention to you and your closed eyes!

Me with the boys...

Talking to Wheelz....Kumaka really liked him and Aaron was laughing at our silly boy!

And then it was ON.....video games with his new friend....that is how Kumaka is bonding these days.  Pretty fun!





Knuckles!




I love that this impromptu meeting came about from some messages on Facebook.
And I love that Aaron is even more amazing in person than in his videos.
What a blessing to meet someone who is willing to give up some time in his schedule to hang with the boy in the giant green cast.


Love it.  We are still trying to get our collage to grow...send me your pics....I can't wait to see how many people we can get on it.  I'm going to print it when his cast comes off and frame it!

The clock is ticking...

Dear life,


Have you ever wished you could turn back time?

Most of the time I realize the futility of that thought.  Except for recently.


I realized something that is ROCKING my WORLD right now.


My life is getting ready to change 

DRASTICALLY.

It will continue to change every year from here on out. 


In four short months this boy









will be moving out....to another state....on an island....6 hours from me. 

Oldest and youngest.....

I have come to terms with that the best that I can.  I will miss this funny boy terribly (even if he doesn't believe it...it's true).

But what has thrown me for a loop is that in three years this boy will leave me for college destination unknown.

And then in three years from that this boy will leave me.

And in two years from that this boy will leave.

And then I will have to face the fact that at some point this one will leave me.

I just remember when each boy was born and I would anticipate each new milestone. Eagerly awaiting a first smile, a first standing moment, a first time walking.  I've gone from checking off milestones happily to wishing I could hang on to the hands of the clock for dear life.....because those days are going away.  

These innocent days of summer fun are going to be one child less fun.  

It's a strange time.  It's not something you can ever prepare for.  It makes me wish I kissed them more when they were smaller....

wished I got out and played with them more often....

wished I yelled less and listened more.  

Of course I still have time....

But the clock is ticking.

We have a winner!!!!!

Dear Life,

Well...

We have a WINNER!!!!!  Congratulations....you have 24 hours to contact me with your address!!!!!

Thank you to all of my new friends and followers!  Stay tuned....I will continue to have fun guests and giveaways!

The men in my life

Dear Life,


Have I introduced you to the men in my life?  It's about time I think.....


Let me preface this by saying how very blessed I feel having so many fabulous men in my life.  Growing up, I didn't have very many boyfriends, and I come from a family of girls.  (Two sisters and one girl cousin on my mom's side.)  So I am feeling very protected and loved by the amount of strong men around me.  I could live without the testosterone, wrestling and fighting that goes on.  The holes in the walls are not so awesome either. But at this point I am thinking God knew I probably wouldn't do too well with everything that goes along with a girl.  I would LOVE to have a girl to play with, dress up, and all of that.  But it's not to be....and I have come to terms with it.  But all of my friends with girls watch out...I am totally in the process of matching up my boys so I can pick my fabulous daughter in laws.  (Just kidding...sort of)


Anyway...back to my boys....


First and foremost...my sweetheart....

He's amazing, loving, sweet, giving, and a great father.  I thank God every single moment for Stuart.

And then there's this handsome kid.  Keoni.....my almost grown up...moving to Hawaii....Eagle Scout....future film maker.  He's an amazing kid....I'm happy to see him grow and get to see some really cool things in his life...but I'm sad he's leaving us.  It's hard to see your kids sprout their wings and fly away.

Here's Kekoa...my future lawyer.  This kid can talk his way out of a paper bag.  One time he got so mad at us he wrote out a letter pointing out every reason we were wrong.  Pretty hilarious.  He's a sweet guy and really cares about others.  He's also a budding surfer and knows how to be quite a dashing dresser.  Love his smile....it melts my heart!







Here is my Mr. Tenderheart Kalani.  He has been a total nurturing sweet boy from birth.  He's always the first to hold a baby, help with a toddler, and hang out with his little brother.  He's  quite the athlete....and has big dreams.  He loves basketball....wants to play for Duke University and of course he wants to be a Laker!  Isn't he dreamy?

Hilarious?  Yup...that's our Kawika.  He wants to be an actor, a hip hop dancer, and possibly a football player.  He's fierce...and sweet all rolled up in one little boy.  He gives us a run for our money....he's all boy and all play all the time.  His laugh is hilarious....makes you crack up!  

This is Kumaka.  Sunshine in  a boy.  He's more than we bargained for in many many ways, but we wouldn't trade any of it.  He's the reason our family knows there are miracles...and he shares his sweet spirit with anyone in a mile's radius.  And of course right now he's in a giant green cast.

I never would have guessed in a million years that this:

Would end up with this:

Blessed....yes....

Slightly crazy..... definitely!

Wouldn't change a thing....for sure!