What a difference a year makes

Dear Life,

Last year Kumaka's life looked like this:

That was the first one.  There was TWO of those giant green casts.  In one year.  Not to mention a variety of other casts.  First a bilateral hip surgery, then a femur break, then a ankle realignment and a femur repair, then a repair of one of the hip plates, then a tibia break.  Kumaka couldn't catch a break last year.  Well actually...that was about the only thing he could catch!! 

Last year, right after his original hip surgery, a very special young man came to visit.

We couldn't believe it when Aaron rolled up in his tricked out truck.  What an amazing day that was...Kumaka has been watching Aaron's videos for  years.

A friendship was formed....and from that friendship another friendship started.

Christiaan is great friends with Aaron, and he contacted me on facebook.  He's an amazing athlete and such an advocate for kiddos.  Thanks to him...Kumaka has this awesome, rad WCMX chair handed down from Christiaan's godson Timmy.  Kumaka loves this chair....and today he was able to rock it at the skatepark.  It was so fun to watch him....and kind of miraculous to me.  Last year we were watching Aaron rock it...and this  year Kumaka's rocking it.  The kids at the skate park all ran over and told him how cool his wheels were.  Can you imagine that?  Able bodied kids telling him how cool his chair is!  They were amazed that he was going to use it at the park.  One of the teenagers even came up to me and asked me if he could take a picture of him...because his sister has special needs and his mom would love to see Kumaka.

What a difference a year makes!  So blessed to have the role models that he has....to keep him busy and active and know that he can do anything he wants to do.  Have wheels....will skate!

Learning to "Carve the 'Dis' out of Disability"

Dear Life,

I've been sitting here contemplating the amount of blessing our family has received.  I've been contemplating how very lucky Kumaka is...to live in the United States....to have a family who loves him, supports him, provides opportunities that are not typical....and BELIEVES that HE CAN DO ANYTHING.  Not only that, but wonderful people have come forward and provide amazing and life changing  experiences.  

Last year at this time, Kumaka was in a cast.  A HUGE cast.

A very special young man came to visit Kumaka. 
I'm not really sure what compelled Aaron "Wheelz" to drive over, but that was the beginning of life changing events for Kumaka.

We've been fans of "Wheelz" since Kumaka was a baby.
He has always been an example of doing what you love...and not allowing anything to stand in your way.
I mean...really...check this out:

How could that not be inspiring?
And then yet another inspiring person contacted us.
Christiaan Bailey has become a family friend...and another huge example to Kumaka.
Christiaan lives life his way....has fun doing it...and even more important believes in the "groms" as he calls Kumaka.

This week he brought Kumaka a BoxDesigns WCMX team chair and patiently taught him how to balance. (He has to learn this because this chair has no brakes and no anti tippers....so when he does wheelies he has to balance or he will tip over...and yes it's already happened LOL...hence the helmet!)

Christiaan was on his way to New Zealand,  but he spent almost an hour with our little man.

Providing Kumaka with a new way to look at his chair.

In his words: "I hope this is a turning point for him...looking at his chair as a fun toy instead of a restrictive tank he has to use".

That is more valuable a lesson than anything Kumaka could learn in school.

LIVING LIFE.

Showing Kumaka that HE defines who he is...not his disability...not a surgery...not a broken bone. 

He has healed from last year....the year of casts and surgeries.

And now his spirit is healing.

I can't wait to see what he will do.

And I feel so blessed to have these opportunities for him.

This summer Kumaka has been invited by OceanHealing Group to go to Costa Rica.

This will be an amazing week....of learning to surf, zip lining, fishing, quad riding, snorkeling, horseback riding, among others.

It will show him that he does not have limits.

He will leave his chair behind him....and see the world in a new way.

HUGE.

Blessing.

HUGE.     

Social Media at it's very best!

Dear Life,

I have to admit I have a deep love and respect for Social Media.  Three or four years ago, that wasn’t the case.  I had a Myspace page…and although it was super fun to decorate….it always seemed a little immature and dark to me.  I did find a Spina Bifida support group that was very helpful….and through there I found a few friends that have carried over to Facebook, but for the most part it was just not for me.  I was very skeptical about the transition to Facebook.  I just didn’t get Social Media.  It was a few months before my 20^th (gasp) high school reunion…and my classmates were adding each other like crazy.  I added a lot of “friends” from high school….but I still wasn’t feeling the love with Facebook.  What changed my mind was when I found a support group for Spina Bifida on Facebook.  All of a sudden my little group grew…and the amount of people that understood what we were going through got bigger and bigger.  I started really feeling support…and when I had questions people answered.  There were people that had been where we were…I stopped feeling alone.  From there I started blogging again…first on Kumaka’s Caringbridge…that way people could all stay up on what was new with Kumaka.  From there I started the scary world of blogging.  I fumbled through it for a few months…until  I found my voice.  It’s evolved over time…I tried to be like others…I tried to follow what the successful bloggers were doing.  But to quote  Alissa from Rags to Stitches, “You have to be authentic to yourself.  Write about what speaks to YOU…don’t try to do what everyone else is doing.”

Pic Courtesy of Little Penelope Lane Blog

  She spoke about branding at Little Penelope Lane’s Blog Conference…she was amazing and her words reresonated with me.  I realized that I needed to write about what I was passionate about.  I realized that my mother was right all those years ago when I was a little girl….I need to be ME…and not worry about what other people are doing.  My blog has become  more about what I am passionate about…which is being an advocate...since I attended that blog conference.  Being a mother to a child with special needs has opened my eyes to the need others have to hear our stories, not to mention the big wide world of adoption.

Sofi Rose....because of her our hearts have turned to international adoption....and we have a whole new group of friends in social media. 

Facebook, blogging, tweeting, instagramming, all of this social media has opened my world.  My world is bigger…and yet more tied together. 

A group of Spina BIfida friends and family...we hooked up at the SBA conference at Downtown Disneyland two years ago.

Friends with a common diagnosis....found through Facebook!  ADORABLE!

Hannah and Kumaka at the beach.  Another Facebook friend turned dear friend in life.  Their family is also on the adoption journey...and have been a great strength to us.

 I am so grateful for the friends I have met via the world wide web. I have seen parents band together, lift each other up, guide each other, help each other.  I have seen miracles happen…most recently in our quest to adopt Sofi from Eastern Europe.  People we have never physically met are going above and beyond to help us raise money.  There is a camaraderie and a goodness that I witness daily on Facebook.  I am so grateful for this media…to allow more people into our world. 

I have seen miracles, I have seen the good in people.  Some of my dearest friends are from the internet….some I haven’t even met.  And some I didn't meet until Facebook..like the Johnson family.  We spoke online about our boys...and what happened after that was a miracle.  I invited her family to stay at our house as an in-between point when they were moving from Oregon to Arizona...(that could have been awkward...what if she was a serial killer or something!!!)Now she’s one of my best friends and her son and Kumaka are besties too!  

 Thank you caringbridge and yahoo groups for bringing these boys together! 

What about the time I was working at our local bookstore and a woman walks in as I was looking at something on Kumaka's caringbridge.  As I closed the program out I explained that I had a son with Spina Bifida and I was just updating his site when she told me about her cousin's daughter Katie.  She said her cousin Sarah has a great blog (A Hull Lot of Fun), where she talks about their journey as a family and a family LIVING with Spina Bifida...and how it never stops them from living a great life.  So I stalked Sarah on FB after reading her blog and falling in love with her family...now she's also one of my most favorite besties ever.

Sarah is a mentor, a friend, a sister.  Found her through her blog.....became friends after I stalked her on Facebook....Sisters through life experiences.  She is amazing...and her daughter Katie (who also has Spina BIfida) and Kumaka are great friends.

Katie and Kumaka at Katies baptism.  Katie and her siblings came to visit multiple times when Kumaka was down and out this year.

 And how about the time I asked Aaron Fotheringham to wear a green shirt in honor of Kumaka and post a picture for a collage I was making....and he one upped me and CAME TO VISIT him right after his surgery!!!  That was CRAZY!

Because of Facebook, Aaron Fotheringham from Nitro Circus came to visit Kumaka while he was recovering from surgery this year.

This is a collage of all the kids that supported Kumaka by wearing green while he was in his "Giant Green Cast".  Most of these kids he's never met in person...they are all friends from Facebook!

 From that friendship we met Christiaan Bailey, Pro Surfer, Skater, and an ambassador for Life Rolls On.  Christiaan is a great friend and support with our little man and his passion for helping kids stay active, and do what they dream of doing is pretty amazing. You can read more about Christiaan HERE and HERE.

Because of Aaron, Christiaan Otter Bailey found Kumaka...and now is a great example and friend.  (Also started out as a facebook friend)

This is a sampling of the blessing social media has been in our lives.

Some of my favorite people in the whole world I have met from Social Media...and I can't wait to meet you all in real life!

Thank you…..for reading…for writing…for sharing…for caring.  

Spina Bifida Awareness Day 25 Hunter's Story

Dear Life,

I have only recently met Hunter's mom through a mutual friend named Christiaan Bailey.  He's an amazing surfer.  He's an amazing skater.  He's an amazing man.  He reached out to us after he found out about us from Aaron Fotheringham (who is also pretty dang awesome).  Christiaan told me that Kumaka needs to be friends with Hunter.  When you read about him...you will agree.  My boy needs an older friend to be an example of living a full life.  I can't wait to get our boys together~

Hunter is 7 ½ years old. 

I remember the day we found out about Hunter's diagnosis like it was yesterday, and yet it was almost 8 years ago. On a cold and rainy January 3, 2005 after spending the holidays in California with our families, we had an appointment at the Genetics and Fetal Lab in Phoenix, AZ to have a “routine” ultrasound at 19 weeks. Things were great – we said YES to finding out the gender and were so excited that we were having a boy. And then the tech slowed down a little bit when looking at the head. I knew right away that something wasn’t right. I asked if it was normal for the two black spots (the ventricles) on the head to be so big. I didn’t remember them being so big with my daughter. Quietly and calmly, the lady said “No, they are not supposed to be that big. I would like to look at a few more things, and then go speak with the doctor.” The doctor and the tech both came back in the room and tried to explain to my husband and I what spina bifida and hydrocephalus are and how they would impact our lives and the life of our child.

 I don’t remember ever hearing these terms before and felt like we had so much information thrown at us in such a short period of time that I felt like I just needed to bust out of there. But no – we had to meet with a genetics counselor who said we had options. Pete and I looked at each other and told this guy we didn’t need to hear about our options because LIFE was the only choice for this child!

I got home and immediately started researching on the internet – trying to read through my tears all these horrible things that my child was going to go through – because that was pretty much all I could find. We started praying and trying to figure out what we were going to do. At first we asked “why us?” but that didn’t last long. We both got that overwhelming feeling that God is putting his trusts in US to raise and love and teach this special child of his. HOLY COW – He trusts me? I went from tears of the unknown, to tears of comfort, knowing I was going to have the Lord on my side through this journey.

We had only been living in Arizona for ten months when we found out about Hunter and his spina bifida. Prior to moving to Arizona, we lived in San Diego. Pete worked for the State of California, and I worked for a mortgage technology company. Within hours of getting this news, Pete and I knew that we needed to move back to California. We knew we were going to need help with my daughter, who was six at the time, and also with Hunter when he was born. I called my boss and without skipping a beat told me I could start back in the office as soon as I needed to. Pete called his former boss and was informed that his position would be opening back up in a month and that he could have his job back. Now if that doesn’t tell you that we were supposed to move back – the next part will. We had just signed a year lease on a rental home. We were only two months into when we got this news. We talked to the property management company and they said we would be responsible for the rental payments until they could get the house re-rented. They told me they contacted the owner, told him our story and they couldn’t do anything to change this. So, knowing that home ownership is public record – I did my research. Come to find out the owner of the home only lived about 30 miles from us in California. So I overnighted him a letter and got a call from him the next day saying he didn’t want us to have to worry about any more rental payments. He was going to let the management company know we were no longer responsible for making the payments. So many answers to our prayers!

Now, 7 ½ years and 15 surgeries later, Hunter is one awesome and happy kid! He loves participating in all different adaptive sports. He loves wheelchair basketball, tennis, chairskating and especially SURFING! Sports have been one of the best things for Hunter – bringing him out of his shell. He even had a wheelchair sports birthday party this year.

 He shared with his friends from school and church what it was like to play basketball, teatherball and do relay races in a wheelchair. Not only was it fun, but it was educational for the kids and their parents (every single parent stayed to watch)!

Spina bifida is just a diagnosis – not a way to define a person, who they are and how their life is going to be. We have been blessed with so many wonderful friends and opportunities (fun and teaching) because of Hunter being a part of our family. I don’t even want to think about how different our life would be without him in it.

My motto is **You never know how strong you are until being strong is the only choice you have.** Yes, you have to be strong when sending your child back for surgery. Yes, you have to be strong when they struggle and get frustrated in physical therapy. Yes, you have to be strong when you feel like the doctors aren’t listening to you – even though you know your child better than anyone. Yes, you have to be strong not just for them – but for YOU!! BE STRONG - even though sometimes you just want to sit down and cry, because you will and that’s OK!

My advice to future parents of a child with spina bifida – as much as you want to “do” for your child, you need to let them learn to “do” for themselves. As parents our purpose is to raise responsible and independent children – with or without spina bifida.