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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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Oppositional Defiant Disorder?

1 Sep

In his life, Sammy didn’t listen very well, and he certainly had a knack for proving people wrong. I often described him as “consistently inconsistent”. It never failed that when I expected him to not tolerate something, he proved me wrong by loving it. When I expected him to like something or do well with an experience, he would pull out all stops to prove me wrong.

I remember one hospital stay in particular when the admitting nurse asked me what his daily routine was like. I told her about his sleeping patterns, what he enjoyed, what he didn’t like. Over the course of the hospital stay, he slept when I said he would be awake and was awake when I said he would be sleeping. “Uh, mom, are you sure he’s your child?”, the nurses would jokingly ask.

Sammy’s neurologist made rounds one afternoon, and as we talked about Sammy, I joked with him about Sammy always doing the opposite of what I said he would do. His doctor quipped with the humor you might expect of a neurologist, “I could diagnose him with Oppositional Defiant Disorder.”

Another label…ODD? Uh, no thanks.

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It’s a no-mascara, Kleenex-carrying kind of day…

28 Dec

On a typical day, I have wardrobe drama. That’s where I stand in front of the closet trying to figure out what I’m going to wear. If it’s toward the end of the work week, it also includes wracking my brain in a desperate attempt to remember what I wore earlier in the week. Back when I was younger and more self-centered than I am now, I would tell my mom that I wanted a wardrobe change when I died. I wanted an outfit for the evening calling/visitation, and then I wanted a different outfit for the funeral the next day. My reasoning was that I didn’t want to be caught dead wearing the same outfit twice. Thankfully, I’ve grown up a lot since then.

In recent weeks, the morning drama has been more focused on whether or not to wear mascara. If the mood is good, I wear it. If there’s a possibility of tears, I don’t. After Sammy passed away, I don’t think I wore mascara for at least a year; that was a no-brainer.

Today is a no-mascara, Kleenex-carrying day. Steve and I are going to Cincinnati today for a “celebration” service for Lula, one of Sammy’s friends. I say Sammy’s friend because she and Sammy are hanging out in heaven together now and that is a great homecoming celebration. The tears and mourning are for her family and those who must now continue on without her physically present in their daily lives.

My heart breaks for broken-hearted parents because I know the pain they feel. The emotional pain is obvious to us all, but I know the physical, mental and spiritual pain that they will experience in the coming days, weeks and months, and I’m helpless to do anything about it.

Today, I will witness two parents who will show unbelievable strength and courage. It’s the same strength and courage I exhibited 3 years ago, and while they’re being strong and courageous for everyone else, I will be shedding the tears that they are trying to hold back.

Today, the mascara remains in the tube while the Kleenex doesn’t stand a chance of surviving.

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