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Giving

1 Mar

I’m a giver, not a taker. And it goes against my nature to ask people for money. The way that you may feel about public speaking is the way I feel about soliciting donations.

But, a couple of times each year, I’m forced to face my fear for the benefit of others with an appeal to my friends and social media contacts to give some of their hard-earned money to help a cause that they likely can’t even pronounce. (Heck, it took me an entire week to learn how to say it and spell it!)

When Families for HoPE was formed, Sammy was 3 years old. He was a living, breathing 3-D presentation and all he had to do was bat his long eyelashes and flash a little grin. Back then, people were asking how they could help the cause. He was my wingman, and without him, I’m just not that charming on my own.

It has been nine years since Sammy left us. Life has gone on, and I spend my days surrounded by people who know of him but never knew him, and who will never know who I was when he was here. I was different then. Steve was different then. When he was here, Sammy inspired us to be fearless.

So today, because Families for HoPE and the HPE families it serves are so important to me, I’m stepping outside my comfort zone and asking you to please give.

For Sammy.

For me.

For HoPE.

DONATE HERE!

Click the photo to donate to Families for HoPE’s run in the Brackets For Good tournament!

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”.

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.

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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.

“…we just want it to be healthy.”

23 Aug

It’s a question frequently asked of expectant parents, “Do you want a boy or a girl?” At some point in time, we have either heard this familiar answer or we have used the statement ourselves to answer that question, “We don’t have a preference; we just want it to be healthy.”

It sounds like a good answer, but I’ve often wanted to ask the follow-up question, “But, what if it isn’t healthy? Then what?” I don’t say that to be critical or condescending, but as someone who has found herself in the position of giving birth to an unhealthy baby, I wonder if some expectant parents have really thought about how they would answer that question.

Sammy spent nearly 4 months in the neonatal ICU following his birth. It was a rather large NICU that could accommodate 60+ babies at any one time, and it was often at capacity. Except for the day following my c-section due to my own health crisis and the day following my gall bladder removal 5 weeks later, I was at Sammy’s bedside daily. I saw newborn babies admitted for observation following c-section deliveries. I saw micro-preemies who were too fragile to be held. I saw twins, triplets, and quads. I saw infants born with drug addictions. I saw babies needing oxygen, intubated and on ventilators, with feeding tubes, and with scars indicating that they had needed surgery of some kind. I saw babies leave the NICU to go home with their parents, and I saw parents leave the NICU with empty arms.

They say that “home is where the heart is”; well, during those four months, my heart was in that NICU. After spending a little while there, I began to feel overwhelmed and depressed by the fact that it seemed as if every baby was sick because that is all I saw every day. Finally, a little reality kicked in and I reminded myself that healthy babies were being born every day in that hospital and also in hospitals and homes around the world.

I think maybe I spent a little too much time focused on and worrying about babies who were sick, but I also think that we sometimes take it for granted that pregnancies will go perfectly and babies will be born healthy.  But, what if?

Life in the NICU