Tuesday, June 26, 2012

Pushing It

1. I hate running. I have hated running since before high school.  Even though I was extremely fit, I tried everything I could do to get out of running in PE.
2. I love my son.  I love everything about S. (well maybe not his running away from me impulsiveness). He has a form of Spina Bifida called a Frontal Encephalocele.

Here is the short version of S's story.  If you want to read more you can go back to 2008 on the history here and read.  S. was born in Haiti over 4 years ago, and because of his "bump" the folks in his village suggested to his birth parents to let him starve to death.  Thankfully they loved him so much they took him to a US run clinic they knew about.  He was able to get a visa and donated care by a wonderful medical team in Sacramento.  After we adopted him, he was able to start seeing the staff at Seattle Children's Hospital.  S. has had two major surgeries, and is expected to have one sometime this fall.  He has a vp shunt, and also has a significant Chiari Malformation, which may need attention when he is older.

Words like Spina Bifida, Encephalocele, Chiari Malformation and vp shunts where not in my vocabulary 6 years ago.  Not until I met Angelina several years before S. was born. I fell in love with this sweet girl, who my friend had adopted from Haiti.  Since meeting her and her mom, we started down the road to adoption, specifically Haitian adoption and even more specifically special needs adoption. I also started volunteering for the Medical Advocacy Team.  While volunteering for MAT, I had the privilege to help with two lovely little girls from Haiti.  Christella and Helande were beautiful, and also needed help. After receiving care in Austin, TX, and recovering in Sarah's and my home, we flew them back to their families in Haiti.  We experienced their parents' joy and they held their mostly healed girls again. Then, we got devastating news.  Christella was sick. Her parents had to race all over town to get her needed supplies for emergency surgery on the back of a motorcycle, on a weekend.  But it was too late, and she didn't make it. We mourned her passing here in the US along with her family in Haiti.

So that brings me back to running.  Why? I am pushing myself.  I have been focusing on getting into shape, and setting challenging goals for myself. I want to raise awareness and support for something dear to my heart. I also want to help others with Spina Bifida.  I want every time I feel my foot hit the pavement to feel gratitude that I can walk and run without the help of a walker or wheelchair.  I want to be an inspiration to my children, family and friends.  So here I am, pushing myself farther than I ever thought I would go.  Signing up to run a half marathon.  In MIAMI.

In order to run in this race, I need to raise $5000 for the Spina Bifida Association. Then they will cover my airfare, hotel for two days, dinner and race entry fee.  I am asking for your help, please! I need your donations. Every little bit helps. Here is the link to my page:

Here is some helpful information about SB:

• Spina Bifida occurs when the spine of the baby fails to close during the first month of pregnancy, leaving a permanent opening in the spinal column.
• Those who are born with Spina Bifida must learn to live with conditions such as hydrocephalus (fluid on the brain), full or partial paralysis, bladder and bowel complications, learning disabilities, depression, and deadly latex allergy as well as social issues.
• There is no known cause of Spina Bifida and each of the 65 million women of childbearing age in this country is at risk for an affected pregnancy.
• It is estimated that up to 70 percent of birth defects like Spina Bifida can be prevented with a daily dose of 400 micrograms of folic acid every day prior to pregnancy.
• The average total lifetime cost to society for infants born with Spina Bifida may well exceed $1,000,000.
• Children who have Spina Bifida have medical expenditures 13 times greater than healthy children.
• Adults who have Spina Bifida had medical expenditures 3 to 6 times greater than healthy adults.
How do the funds raised help SBA?
  •   $52.40 will provide 10 diagnosed mothers-to-be and six families living with Spina Bifida with tools, resources, information, and guidance from our National Resource Center for one day.
  •   $78.60 will provide a full-day of education and supportive services to a family of three living below the poverty line. This includes treatment information, access to health-care facilities, and psycho-social programming assistance, among others. A meal is also included.
  •   $131.00 provides 550 women with information about preventing Spina Bifida with daily folic acid.
  •   $183.40 will support at least two children attending the three-day Kids!Camp – the only such camp in the country that promotes self-confidence, esteem and independence all in a fun atmosphere.
  •   $262.20 enhances our college scholarship fund to further a young person with Spina Bifida’s education.
  •   $1,048.00 furthers research in Spina Bifida to develop better treatment for, more understanding about, and new ways to prevent this life threatening birth defect. 

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