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A Perfect “10”

20 Mar

On January 10, 2003, we received the diagnosis of Holoprosencephaly (HPE) for our unborn baby. The specialist described HPE as 10 times worse than Down Syndrome.

On April 10, 2003, Samuel Aaron Harley was born weighing 6 lbs., 10 oz.

If he were with us today, Sammy would be celebrating his 10th birthday on April 10.

If he had been born without HPE, Sammy would be living a typical 10 year-old boy’s life, and we would be patiently waiting to see what he might grow up to become and how the adult Sammy might make an impact on the future world.

Instead, Sammy was born with HPE, and before he even left the womb, he was already making an impact on the world. In the 5 years he was here with us, he melted hearts by his sweet innocence, and he taught others through his determination and perseverance.

In honor of Sammy’s 10th birthday, it seems only fitting to celebrate the number 10.

What you see below is the formation of a ripple that started with Sammy, and I would ask you to help his ripple grow on this 10th birthday. Sammy was one of the children who helped inspire the formation of Families for HoPE, Inc., and I will be participating in the annual Walking for Dreams fundraising walk on Sunday, May 19 at the Downtown Indianapolis Canal. 100% of the funds raised by my team directly benefits Families for HoPE.

The first ring around Sammy’s photo contains 10 circles and within those 10 circles are room for 10 names. I am seeking 10 friends who will donate $10 to join my team and walk with me in honor of Sammy. Then, I would like those 10 friends to get 10 of their friends to donate $10, and ask those friends to consider walking with us in honor of Sammy, too. (Below is a picture of what my 10 friends will receive to share with their 10 friends.) My goal is to completely fill Sammy’s ripple with names to create my “perfect 10“.

Now, imagine if those 10 friends asked 10 of their friends to donate $10 and they walked with us in honor of Sammy, too. Do you see the ripple forming?

The thing about Sammy is that he couldn’t participate in an event like this because HPE made him unable to walk. Also, Sammy couldn’t ask you to donate $10 and walk on his team because HPE made him unable to talk. He couldn’t walk or talk, yet he made quite an impact on the world.

Will you be a part of the ripple that Sammy started? Will you be one of my “perfect 10“ friends?

1-Perfect 10 Ripples

If you would like to start your own ‘perfect 10″ ripple for Sammy, please email me at LeslieHarley527@gmail.com, and I will send you the file so that you can add your 10 friends and their 10 friends to the ripple.

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The R-Word

6 Mar

“That’s so retarded.”
Do you say it?

“Don’t be a retard.”
Do you say that?

My only child, Sammy, was born with profound mental retardation. Not just your everyday mental retardation, but “profound” mental retardation. Unable to speak, unable to do anything on his own and totally dependent upon the love and care of others. He was my cherished, beloved son, the light of my life.

Sammy came into the world to teach, so if you want to use the “R-word” correctly, I’m happy to share Sammy’s story and teach you about him and other kids born like him. The experience will be “profound”, I promise.

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Blue

24 Nov

After Sammy’s death, we pretty much threw all of his things in plastic storage containers and stacked them in the closets in his bedroom. We just weren’t ready to go through his things, and I certainly didn’t want to give anything away for a while.

I’ve written blog entries about some of the things we have donated or shared with other children with HPE, so I have let go of some things when I knew there was a need by another child.

Five years later, Steve and I are currently in the process of cleaning out those closets and transitioning Sammy’s room into an office where I can do my work for Families for HoPE and hopefully begin working on Sammy’s scrapbook again.

As we empty and clean his room, I can’t help but think about the weekend in 2003 when we painted and prepared the room for Sammy. He was about 6 months old, and we decided that Sammy needed more space and the amenities of the master bedroom would be better for the nurses who worked with him at night while we slept.

With the help of our family, we spent an entire weekend painting and getting the room ready. By Sunday evening, we were able to officially show him his new room.

As I carried him into his room and laid him down in his crib, I was shocked by what I saw. The dark blue walls reflected off of Sammy’s pale white skin and made him look blue! I couldn’t help but laugh at the irony. My baby with a tracheostomy who had a knack for holding his breath was in a blue room that made him look blue! What was I thinking?

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