Tag Archives: holoprosencephaly

Some Kid

10 Mar

As an administrator of the FamiliesforHoPE.org website, I’ve been spending time making updates to the site in preparation for a new look to be unveiled later this month during Holoprosencephaly Awareness Week.  As a result, I came across this post I had written in 2010, and thought I’d share it here since I referenced Sammy.

Some Kid

Throughout my journey in the HPE world, I have had the privilege to personally meet many individuals with HPE. So often, I find that I don’t even have the words to adequately describe the encounter because I’m so humbled by the experience. I can recite the definition of holoprosencephaly forward and backward in my sleep; I can quote statistics off the tip of my tongue; and, I can explain the symptoms and secondary conditions that are common with the diagnosis without missing a beat. Like many of you, I feel as if I may have earned a Ph.D. in HPE, if there were such a thing.

I can tell you all about what our children have, but when it comes to describing who our children are, I do not have concise words to adequately describe them all–I could talk for days on end about all of our amazing kids with HPE. With my own son, Sammy, there are moments when I catch myself saying, “He was some kid.” Not “some kid” as in a random, nameless person; but “some kid” in that he was spectacular, similar to the phrase, “Wow, that was some game we watched last night.

Charlotte's WebSome kid” makes me think of Charlotte’s Web, the classic children’s novel by E.B. White. From the very first line, we learn that the life of Wilbur is threatened. Wilbur, a newly-born piglet, is described as “very small and weak, and it will never amount to anything.” A barn spider named Charlotte is determined to save Wilbur, so she spins a web in the barn that reads “Some Pig” in an attempt to convince the farmer and the surrounding community that Wilbur is special and should be saved.

As parents of children with HPE, we know our children are something very special, but too often, we see the looks and hear the whispers of others in our communities (and sadly, even members of our own families at times) who view our kids like little Wilbur. In her attempt to save Wilbur, Charlotte also created other webs describing Wilbur as, “terrific“, “radiant“, and “humble“.

If you were to weave a web over your child to describe him/her in 1-2 words, what would your web say?
Terrific

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.

20130320-110504.jpg

How’s this for a list?

29 Aug

I thought I’d share one of the hundreds of scrapbook pages I’ve created over the years.

When we received the diagnosis of Sammy’s HPE, we were given examples of the things that a child with HPE might never be able to do.  Some of them were easier to accept than others, but by far the hardest to hear was, “You need to be prepared to love a child who may never be able to show you love in return.”  That one cut to the core.

The first meeting I had with Sammy’s neurologist took place in my hospital room just two days following Sammy’s birth.  He came into my room, introduced himself, and he sat down to talk with me.  I can remember his exact words. . . “I’ve just come from evaluating your son and reading the scans of his brain.  As was expected from the prenatal ultrasound, I can confirm that he does have holoprosencephaly.  As a result of that diagnosis, I could give you a list of all of the things that your son will never be able to do; however, I don’t do that anymore.  I find that as soon as I say those things, these kids will prove me wrong; so, I’ve learned to just keep my mouth shut and let these kids show me what they are going to do.”  In that moment, I knew that this physician would be a great member of Sammy’s medical team.

I had done my homework, and I knew very well all of the many things that Sammy would never be able to do.  Being somewhat sarcastic at times, I decided one day to make a list of the things that Sammy would never be able to do compared to other “typical” children.  Here are a few of my favorites that I incorporated into a scrapbook page:

Say bad words
Tell lies
Play in the toilet
Put his fingers in light sockets
Eat from the dog’s bowl
Swallow pennies
Bully other kids
Put crayons in the dryer
Climb into the dishwasher
Sneak off and elope in Las Vegas