Tyranny of the Urgent

4 Oct

I’m beating myself up right now because I allowed something to happen that I could have easily prevented. I purchased the domain name for SammyYammy.com the summer of 2003 when he was only a few months old, and over the years, I had renewed the domain registration before it expired.

This time when the domain renewal notices came (and there were many of them filling my inbox), I was complacent and busy with other urgent activities in my life, and I just kept putting it off. Yesterday, I finally took a moment and made myself sit down and take care of the renewal. Today, I am filled with regret because SammyYammy.com is now owned by someone other than me, and I only have myself to blame.

I haven’t lost any of the information I had stored at the site because I had transferred it all to this WordPress page (SammyYammy.wordpress.com), but the domain is gone unless the current owner agrees to sell it back to me or the current owner doesn’t renew the domain within the next 12 months.

Even though I didn’t update it as often as I had hoped over the years, Sammy’s website was and is one of the most important things to me. Instead of forcing myself to step outside of the whirlwind of urgent tasks and obligations, I continued to allow a truly important thing to be shoved farther down the list. As I look down the list, the sad reality is that there are way too many other important things–needs, people, tasks–that have slipped to the bottom. That’s gonna change starting now!


Brackets For Good

7 Mar

imageFamilies for HoPE was recently selected to participate in a unique online fundraising competition by an Indianapolis organization known as Brackets For Good. Think of the March Madness college basketball bracket of 64 teams, but instead of teams, there are 64 nonprofit organizations competing to score points (raise dollars) in a single-elimination tournament.

Last week as we embarked on our very-first Brackets For Good tournament, we weren’t sure quite what to expect, but we had hope for a respectable showing. With the support and generosity of many, we scored more points than our Round 1 opponent (American Diabetes Association of Indiana). Half of the 64 organizations were eliminated after the first round, and Families for HoPE is one of 32 organizations remaining in the tournament!

We are extremely excited to advance to Round 2; however, we have our work cut out for us. Our opponent is Joseph Maley Foundation, and in addition to being a seasoned veteran in the Brackets For Good tournament, Joseph Maley Foundation was the 2015 runner-up for the entire tournament in Indianapolis! No doubt, they are seeking to return to the final round in 2016 and finish their task of capturing the championship (and the $10,000 cash prize).

We need your help if we want to make it through to the Sweet 16! You may be familiar with the term “Cinderella Team”. Merriam-Webster dictionary defines a “Cinderella” team as:

  • someone or something that is ignored but that deserves attention or credit.
  • someone or something (such as a sports team) that is not expected to do well but that succeeds or wins in a very exciting way.

Families for HoPE goes into this round as the Cinderella team! Everything about HPE fits the definition of a Cinderella team.

  • The odds of a fetus with HPE surviving to birth is only 3%.
  • Of that 3%, very few survive to six months of age.
  • Did you know that HPE is the most common brain malformation in a developing fetus occurring between days 17 and 21 of fetal development? It generally causes early miscarriage. If you or someone you know experienced a miscarriage in the earliest stage of pregnancy, it very well could have been due to HPE.
  • Medical statistics are what they are, and physicians are unable to offer parents much hope following a diagnosis of HPE.
  • Parents are warned of their child’s future inability to walk, talk, eat, learn, grow, breathe.

We know that HPE is a common but not widely-known condition . . . “Something that is ignored but that deserves attention or credit.”

Our kiddos (and even teens and adults) with HPE are truly the all-star players on our Cinderella team who “are not expected to do well but they succeed or win in a very exciting way.” Every breath, every smile, every day!

Our goal is to raise funds for our 2016 Family Conference on Holoprosencephaly, but we know that this Brackets For Good tournament is a very good platform for raising awareness of HPE as Families for HoPE and the children we serve are able to share our Cinderella story far and wide. Won’t you please make a donation now and share this message with your family, friends, neighbors, co-workers and others so that they can help our fairy-tale story come true?

How do I donate?

Click here to donate! (100% of funds will go to Families for HoPE)

To view the entire bracket, click here

The name game . . .

23 Nov

I’ve had opportunities recently to share the story of how we chose Sammy’s name, and as I read through my blog, it doesn’t appear that I’ve shared the story here.

Did you know that Sammy was supposed to be a “Seth”?  Early in my pregnancy as we discussed names for our baby, I wanted a name from the Bible.  As I contemplated it, I was fond of Seth.  Seth was the third child of Adam and Eve.  After Cain had killed Abel, Seth was born, and according to the genealogy of Jesus found in the Gospel of Luke, it was through Seth’s lineage that Jesus was born.

Being a planner by nature, I wanted to know our baby’s gender when the time came for the big reveal at the 20 week ultrasound.  Steve and I decided that we would share the baby’s gender, but we would keep the baby’s name a secret until its birth.  Following the ultrasound confirming we were having a boy, we settled on Seth.

Due to irregularities seen during that ultrasound, it was recommended that I return for a follow-up ultrasound four weeks later.  It was during this second round of ultrasounds when I learned that our Seth had Holoprosencephaly.  We were told to expect profound mental retardation and “facial deformities” as the ultrasound indicated his nose was small, his eyes were closely-set and his eye orbits were protruding.

As I sought comfort and understanding through God’s word, I was reminded of a verse I had studied a few weeks prior.  It was 1 Samuel 16:7… Man looks at the outward appearance, but the Lord looks at the heart.  It was in that moment when I knew his name was to be “Samuel”.


Reality of HoPE

22 Nov

I know that it can be uncomfortable to be my friend especially when I share updates on children who are sick or dying. My deepest desire is that no parent would face a life-threatening diagnosis for his/her child and none of my friends would experience the pain and heartbreak of saying goodbye to one’s child.

Can I tell you a little bit about Holoprosencephaly (HPE)? It is the most common brain malformation in a developing fetus. It occurs during days 17-21 of fetal development, and as a result, it often ends in early miscarriage. It is estimated that HPE occurs 1 in every 250 pregnancies, so if you experienced a miscarriage without an explanation of why, HPE could be the reason.

Did you know that the likelihood of a fetus with HPE surviving to birth is only 3%? Let me say that again…3%! Can you imagine the determination and will it must take to overcome those odds?

When one of our children with HPE passes away, it rocks our HPE community. We grieve for the parents, siblings and families, but I know we also celebrate the power and strength these children have had in the moments, hours, days and years that have made up the lifetimes they have known.

I will never be as strong and courageous as these little ones have been in their lives, but their examples push me to step outside of my comfort zone, to give of myself to others in sharing my journey from HPE to HoPE.

If you would like to know more about HPE or would like to help our cause, please visit http://www.FamiliesforHoPE.org. To learn more about my personal journey, visit http://www.SammyYammy.com.


Strength . . .

1 May
I’ve been thinking about this photo all day. It was a Polaroid taken on May 1, 2003 by Sammy’s neonatal ICU nurse, Cathy Firestone. On that date, Sammy was three weeks old, and two weeks into battling an overwhelming infection and a perforation of his intestines. I spent hours each day at his bedside praying that he would survive, and while he was heavily sedated and ventilated, I spent those two weeks waiting for him to open his eyes to show us that the worst was over.
Early that morning before we arrived, Cathy caught Sammy opening his eyes, so she grabbed a camera and had this photo waiting for me near Sammy’s bed. It will always be one of my treasures. While it’s easy to look at the photo and see how weak he looked, I see his strength because I know just how much he overcame.


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.


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.