Monday, December 3, 2012

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 20th (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 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 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.  


  1. TEARS!!!!!! As always!!!
    Love you dear friend! So thankful for social media for bringing us together!!!

  2. I am so glad that I found your blog even though we have never met your writing and the way you see things lifts me up. I do my best to try and stay positive but every once in awhile I need a lift and to know that someone understands EXACTLY what I go through every day. I have not even been reading your blog for a week but every time I do I seem to smile a little more. I blog myself to lift me up also. Thank you for encouraging me through your words.

    1. Chelsea...thank you for your kind words! Thank you so much! :) Keep writing...

    2. You are very welcome. I am looking forward to reading more.


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