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Bitter-Sweet

 

bittersweet strawberryIf this was a movie it would have all of the story of a true drama; mother gives birth to a child who suffers the trauma of a brain hemorrhage leading to a lifelong disability but what has come out of that child’s disability is truly a story of love and triumph not only for the family but the birth of two organizations which have changed the world as we know it today, improving the lives of so many children. This is the inspirational journey of the Kramm Family of and the story of the birth of FLAVORx and Hadley’s Park, the love they have for each other and families across the world.

Let’s go back to the beginning of the story…
Way back… Back to the early 80’s; the era of Madonna and the first personal computers when Kenny and Shelley Kramm met in college and went from best friends to sweethearts. They both graduated and received a Bachelor of Science from the University of Maryland where Kenny studies concentrated on Advertising Design and Business and Shelley’s studies were Interior Design and Landscape Architecture. Kenny was a member of the Omicron Nu honors society and Shelley a member of Alpha Delta Pi Sorority.

A year after graduating college and both working in the real world they were married and started their life together. After a few bumps in the world of Advertising and Design Kenny decided he had enough and went back to his families pharmacy where he enjoyed the daily interactions with the customers. He strived to give his customers 100% customer care.

Parenthood…
In 1988 Shelley and Kenny became proud parents after Shelley’s rather formidable pregnancy which ended in a 6 week hospital stay prior to the premature birth of their first daughter. Shelley’s pregnancy was complicated by Toxemia/Preeclampsia and Gallbladder problems and a car accident… Her OB actually called her “the girl with the little black rain cloud over her head”

However when Sarah was born at 34 weeks her prognosis was pretty bleak. With low apgar scores the doctors prepared Shelley and Kenny for the worst and told them that she would most likely be deaf, retarded, possibly blind and would never live on her own. Devastated at that moment Shelley and Kenny worried and wondered what was to become of their new little baby. However, things turned around and 14 days after she was born both Shelley and Sarah went home to begin their new life together. And parenthood began…

In 1992 after several attempts at getting pregnant again Shelley and Kenny finally got the news they were so longing for. Shelley was pregnant again. Fearing for the worse after her last pregnancy she was always worried that she would have a visit where she heard the words “protein in urine” and held her breath… or blood pressure spike… or sudden huge weigh gain… and in January 1992 that is what happened. And eight weeks before her March due date she was hospitalized again for Toxemia/Preeclampsia.

When Shelley’s blood pressure escalated out of control it was time to deliver the baby and at 12:00 noon a little 3lb 6oz baby girl who they named Hadley was born, with a loud cry. This thrilled both Shelley and Kenny, as in Sarah’s birth there was no cry. So they thought, thank god, we got through this again… But unfortunately on Hadley’s 10th day of life she suffered a grade 2 bilateral intracranial hemorrhage which changed her life and her families forever.

Hadley stayed in the hospital for a month and was released in early spring with a box of diapers, formula, goodbye’s and Kenny, Shelley, Sarah and Hadley all went home to their “new” life with a newborn baby with what they thought was a seizure disorder. Enter the life of three times a day medications, blood tests and weekly doctor visits.

Hadley was a happy little baby but Shelley worried that she wasn’t hitting milestones like her older sister Sarah did. And at 8 months she heard the words that changed her life yet again, “You’re child has cerebral palsy.” Life over the next few years would include daily medication, doctor’s visits, physical therapists visits, speech therapists, cognitive therapists.

The inspiration…
As like most children Sarah had the usual ear infections and didn’t like taking her medicine however for Hadley this wasn’t just a matter of not liking the taste, this was a matter of necessity. If Hadley didn’t take her medicine she would have a seizure and end up in the Emergency Room for countless hours. After several trips like this Shelley asked Kenny who worked at his family’s pharmacy to “do something.” So that is what Kenny did… Hours after the store closed Kenny and his father a pharmacist of 40 years spent time working on coming up with a flavor that would make Hadley’s Phenobarbital pleasant enough so that she would take it and stay out of the ER and from ultimately seizing. After several go rounds a banana flavor came to be and Hadley was happy to suck down her prior unpleasant tasting medication.

From that point a company was born…. Kenny became an entrepreneur out of necessity for his daughter. Spending a lot of time in those early years of the company around the Kramm family kitchen table another company was given birth to.

After experiencing a day of “inaccessible” angst. Shelley came home from the park with her two daughters she pulled out the drawing board and began to draw ideas for a playground for all children, with and without disabilities and that was the birth of what is known today as Hadley’s Park.

After starting a 501c(3) nonprofit organization, forming a Board of Directors, holding meetings, forming fundraising committees, hosting events, securing the land, lobbying before the Maryland General Assembly and the local government to secure state funds, she and her board raised the needed 1 Million dollars to build the playground. This was grass roots at its best, a true public private partnership.

In June 1996 Hadley’s Park opened its flagship one acre themed play playground which won numerous awards and was used as a model to build 25 more in the State of Maryland and several more in the DC Metro Area.

Shelley continued her work to bring fully inclusive playgrounds around the country and Canada by traveling and speaking about the importance of play for all children to Landscape Architects.

I am ABLE…
After growing up with a disabled sister Sarah Kramm had something to say and she wanted a platform to speak. So in 2005 she vied for the title of Miss Maryland Teen America which if crowned would give her the ability to speak around the state about the importance of understanding that we are all “able” and speak about discrimination of the disabled that she witness firsthand with her younger sister.

Sarah followed in her parents entrepreneurial footsteps and came up with a “band of hope” which she called the “I am ABLE” band and raised funds to help create fully inclusive playgrounds like Hadley’s Park Projects.

These two organizations grew, not out of a desire to succeed as businesses, but rather, as a source of healing for a family in the face of adversity. By helping Hadley, her family has paved the way for millions of other children that now have the opportunity to simply be kids like everyone else. Although Hadley can’t verbally communicate her thanks, you can tell by the look in her eyes and the smile on her face that she understands the world is a better place because she has lived.

And now…
The Kramm’s reside in the Washington DC suburbs with their two daughters, Sarah and Hadley. Since selling FLAVORx in 2007 and closing Hadley’s Park, Inc they now are in the next chapter of their life. Shelley is chronicling their journey as a family at I’m Still Standing.com as an impetus to writing a novel and hopefully a movie! *fingers crossed!!

I would love to have you stay in touch! Subscribe to I’m Still Standing or you can always contact Shelley.

About shelley

Shelley Kramm is the founder and editor of I'm Still Standing and The DC Ladies. Learn more about her and her inspirational family here and connect with her on Twitter, Facebook, Linkedin, Google+ and on about.me.

Other places to find shelley

Comments

  1. I loved reading this and getting to know you. Thanks for a great post.

    The Damsel in Dis Dress
    http://www.mynewoldschool.com

  2. Thank you for sharing this, great intro, you are truly an inspiration to us all!

  3. Wow, Shelley – what a story. I just adore you and your family more and more, the more I get to know you.

  4. This is an amazing story you have to tell. Thank you for sharing.

  5. Beautiful post, Shelley! You have an incredible family. Stumbled.

    I'm just catching up on all things blogging after getting back from vaca last night and now trying to get over the flu with a coughing baby… so you'll see me catching up on 31dbb stuff asap.

    <3

  6. Have mercy, who knew you could find such a full and moving story zipping around on line?

    I am and will be thinking about your journey now and forever. And I write what I mean. I had a student named Stacy about 11 years ago. CP and apparently graduated college with honors. She could not sing, but I gave her whatever she wanted to practice rhythms on and she always smiled. oh, and she had a huge crush on my son, but at the time he did not notice girls.

    peace to you and yours, and yes I am a blogger mom. But to heck with that. I am here for heart wishes and thats it.

  7. Very cool! Looks like we have aspirations of writing a book in common! I love, love, love that your daughter is an advocate for the able-ness of people with disabilities. I really hope that Jaden will advocate like that for his twin brother.
    http://www.outrageousfortune.net

  8. I have known you were an amazing woman, since I first “met” you, Shelley, and this blog post just reinforces that. I hope someday we will have the blessing of meeting in person. And yes, I definitely see a book in your future.

    • Marie,
      thank you so much for popping by, i just felt maybe it was time that everyone knew my whole story lol and YES i sooo look forward to meeting you “in the flesh” someday soon!! have a great day!
      Shelley :)

  9. Shelley – your story is truly moving and inspirational – thank you so much for sharing,

    • Tina,
      I’m so glad you popped by to read my story and thank you for the compliment it really means a lot! Have a great day!
      Shelley :)

  10. Wow! What a story! Thanks so much for sharing. Very inspiring . . .

  11. You’re not just “still standing,” Shelley, you’re living life full out! Whether you were always this way or it grew with the hurdles that were put before you, the energy that comes through your writing (this and other articles on your website) is strong and healing in and of itself. Bravo to you and to your family!

  12. Beautiful story of love, necessity and family. You are an amazing Mom!

  13. Your an inspiration Shelley :) Truly a blessing to have and I am honored to have you in my group :)

  14. Thank you for sharing your story. What an amazing series of ups and downs for a young mother!

  15. What an amazing journey, Shelley. Your words are filled with strength hope and love. Thanks so much for inspiring me and countless other folks.

  16. Wow, what an incredible story! You’ve gone through so much, and you’re still inspiring people. Way to go! :)

  17. Shelley, I was happy to find your site on the Cerebral Palsy Family Network Facebook page. It is people like you that continue to inspire moms like me. Congrats on all your accomplishments as a family!

  18. Wow I really Like this story. could you email me? I also have a daughter with cerebral palsy, autism, and epilepsy. This is suppose to be her last year of school. email me on my email, I’d really like to talk with you. Thank You….

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