Tuesday, September 21, 2010

All of me....{My Ramblings}

I started a separate blog, A Savvy Heart, with the hope of helping spread awareness about organ donation... I have decided that like my NO Moo For Me! site I should simply incorporate it into this site.  I am all about simplifying my life right now and having separate blogs isn't working for me.  I don't compartmentalize my life and I realize I was trying to do this in my blogs because I thought that if I put them all under my roof well it simply wouldn't be interesting for those who are simply looking for a {bargain} blog.

I then realized...this is my blog and it is about our {frugal family}...well...how did we become the family we are...all of these aspects (organ donation, frugality, my daughter's dairy allergy) are all a part of my family and those will be a part of my blog.  This is who we are...this is who I am.

I am a Mami who has a child who is alive because of the amazing Gift of organ donation.  I am an advocate of Organ Donation.  I am a Mami who has a child who has a severe dairy allergy in part because of the immune suppressant medication she takes on a daily basis to keep her alive.  I am a Mami who had a rude awakening ... one day I was living a life without a lot of worry about our financial future and the next...the next day I worried about how I was going to pay medical bills, travel expenses for medical care and how I was going to feed my baby...I am all this...and this is what this blog will focus on....all of me...not just a compartment of who I am...who my family is.

A Savvy Heart

This year we were matched with several runners who raised money for the American Liver Foundation's Run for Research by sharing Savannah's story in their fundraising.  I was so thrilled that our journey may help someone else but I kept thinking...no one knows this journey better then .. well... me.

We happened to be matched with an amazing woman by the name of Cindy who contacted Savannah via email to learn more about her.  When I  wrote back and explained that Savannah was just 3 years old she was shocked.  She had a friend who needed a life saving liver transplant and was running because of the love she had for her friend.  It never occurred to her that she would be matched with a child who needed a transplant.  It never occurred to her that a child would need a liver transplant....she was not alone for prior to Savannah's birth it never occurred to me either.

The morning of the marathon I called one of the runners we were matched with, Joe.  I "know" a little about him because we became facebook "friends".  When I clicked on his profile and saw his beautiful family I cried...his children are healthy and yet he runs for children like mine.  That morning he shared his excitement with me and the story of an amazing woman who spoke the day before.  He told me that her daughter had a little girl who had the same disease as Savannah.

Prior to the marathon, we had the pleasure of meeting Cindy and she honored us by taking a picture of Savannah and placing it on her shirt.  She ran wearing my daughter's image...it still brings tears to my eyes.  I a few days after the Boston Marathon I received an email from another "liver mom" who I "know" because of the love and support I have received through an online forum named liverfamilies.net.  She wrote the words that launched an itch in me ...

I was super happy when during my grouling treck of the marathon yesterday- i stumbled(by that point stumbling was the most i could do)- upon another Run for Research Team member with Savvy's pic on her back!

This amazing woman ran...she ran because her daughter was also born with Biliary Atresia as mine was and was transplanted in 2001.  She ran to spread awareness one step at a time!   To you, Crystal, Thank You for running for all of our children...I know we have never "met" but you have inspired me in a way that I hope honors both of our daughters.

I take my first steps to spread awareness about Biliary Atresia.  I take my first steps to spread awareness about organ donation.  I take my first steps because I hope that the cure will be found so children born with Biliary Atresia will no longer need a liver transplant.  I may never reach the Boston Marathon...that is not the ultimate goal for me...it is simply to spread awareness...to honor the Gift we have been given and to help bring awareness...maybe one day...one day mother's and father's will not have to witness their child fight for their life as they wait on a list.

1 comment:

Becky Jane said...

Thank you ever so much for your beautiful post...it is amazing how many wonderful people there are in this crazy world..your post just re-affirms that this is a very good place to be!