Kristine is so kind to allow me to share her space another
month.
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 everyone was 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.
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!
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.
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!
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.”
She spoke about branding at Little Penelope Lane’s Blog Conference…she
was amazing.
Because of Aaron, Christiaan Otter Bailey found Kumaka...and now is
a great example and friend. (Also started out as a facebook friend)
Katie and Kumaka at Katies baptism. Katie and her siblings came to visit multiple times when Kumaka was down and out this year.
I realized that I needed to
write about what I was passionate about.
I realized that my mother was right….I need to be ME…and not worry about
what other people are doing. My blog has
been a little more about what I am passionate about…which is being an advocate. Being a mother to a child with special needs
has opened my eyes to the need others have to hear our stories.
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.
Facebook, blogging, tweeting, instagramming, all of this
social media has opened my world. My
world is bigger…and yet more tied together.
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.
Sofi Rose....because of her our hearts have turned to international
adoption....and we have a whole new group of friends in social media.
There is a camaraderie and a goodness that I witness daily on
Facebook. I am so grateful for this
media…for people like Kristine who are giving me a chance to voice our story
with her readers…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.
Not to mention the family I let stay at my house after just meeting them
briefly online.
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.
Now she’s one of my best friends and her son and Kumaka are besties too!
Kumaka and Brendan are best friends. They are close in age, their
family has slept over at our house...and his mommy is one of my besties.
Thank you caringbridge and yahoo groups.
Thank you…..for reading…for writing…for sharing…for
caring.
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I "met" Tracy thru blogging.
Her heart is 100% gold.
Stop in and check out her {little} corner of the world wide web.
You will fall in love with her family, their story, and her.
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