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 To learn more about my personal journey, visit


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, 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.


“Come, follow Me…”

16 Feb

I was recently scanning my laptop looking for old photos, and I came across a few items I had written many years ago.  I thought I’d share something I wrote in 2003 for a young man Steve and I were mentoring at the time.  Looking at the date of when it was written, I estimate that I was around 28 weeks pregnant which means that we had been made aware of Sammy’s HPE for about a month.


When I was younger, I thought everything was boring, especially if it had anything to do with church or religion.  It has taken me a long time to finally figure it out, but I’ve learned over the years that Jesus is FAR from boring.

After He began His ministry, one of the first things Jesus did was to extend an invitation of a lifetime to four ordinary fishermen (Peter, Andrew, James, and John).  “Come, follow Me,” Jesus said, “and I will make you fishers of men.”  They left behind all they had known and embarked on an amazing adventure with Christ.

Close your eyes and imagine Christ whispering to you, “Hey, follow me, and I will make you . . . ”  Think about what He will make you and what you’d like to be.  Psalm 37:4 says, “Delight yourself in the Lord and He will give you the desires of your heart.”  What does your heart desire?

Jesus’ disciples weren’t just His students, they were His friends, and He loved them deeply.   They went everywhere with Him, and they did so many things together.  They ate together, traveled together, and talked together.  Jesus even gave some of them nicknames just like we do with our closest friends.  He called Peter the “Rock”, and He referred to James and John as “Sons of Thunder.”  They walked everywhere they went, so think about the times when you’ve walked somewhere with your best friends and how you all have laughed and joked with each other.  Don’t you imagine that they shared a few “high fives” after someone had been healed?

After Jesus was crucified and left them, don’t you imagine that each of the disciples must have played back a video in their minds of every moment that they had spent with Jesus?  Peter had walked on water.  They each took a piece of the five loaves and the two fish and wondered how in the world they were going to feed a multitude of people, only to find that there was plenty leftover after everyone was full.  What about the time when they ran out of wine at the wedding, and Jesus turned the water into wine?  How about the blind man who could now see and the crippled man who could now dance and leap for joy?  Each of the disciples was given the power to perform miracles and heal people.  Remember that these were ordinary men who were given an extraordinary power and an extraordinary responsibility.

Life as a disciple wasn’t always easy for them, and it won’t always be easy for us.  There will be risks and challenges that we never anticipated, and there will be times when we will question our abilities.  Sometimes, it seems easier just to stay in the boat and continue our safe, ordinary way, but Jesus wants us to step out of the boat and take a leap of faith with Him.  Are you ready to begin the adventure of a lifetime?  Can you hear Him calling to you, “Come, follow Me . . .”?

The adventure awaits you!

Living Proof

21 Jan

Eight years ago, we had the opportunity to introduce Christian author and speaker Beth Moore to Sammy. I didn’t realize that Beth had shared the encounter in one of her Bible lessons in the days following our meeting. A friend contacted me today to tell me she heard our story told on today’s Living Proof broadcast. Sammy’s ministry and our testimony continues on and I pray that it will touch hearts for Christ.

Saying hi Praying


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?