Rhonda

19 Oct

I was a baby when Rhonda came onto my life, so I don’t remember when I met her, but she was my first BFF.  Because my mom was a working mother, Rhonda’s mother Hattie was hired to be my babysitter, and I spent nearly every weekday at Hattie’s house for seven years. It was a carefree time, and there are so many memories I have of my childhood with Hattie and Rhonda.  Playing in the backyard and being chased by the chickens; plucking berries from the mulberry bushes growing wild along the railroad tracks; sitting in a metal lawn chair by the garden snapping green beans; the howling of the coon dogs out back as they awaited dinner time.  The hissing sound coming from the kitchen as dinner was cooking in the pressure cooker; glass canning jars filled with jellies, tomatoes, beans.  Eating Hattie’s macaroni and tomatoes.  The sizzle and welding sparks I’d see through the open garage door where Hattie’s husband worked on tractor engines. I even learned to tie my shoes at Hattie’s house.

But Rhonda was where my attention was.  If I remember correctly, Rhonda was 6 years older than I was, and I looked up to her.  Rhonda loved wearing rings, and she was one of those people who wore rings on every finger.  Sometimes when grown ups came to visit, they would bring a new ring for Rhonda because they knew she liked them so much, and we would spend hours huddled together scrutinizing every piece of jewelry in the Service Merchandise catalog marking and circling our favorites. We did the same with the Christmas catalogs from JC Penney and Sears.  Listening to records or the radio in her bedroom while looking at Teen Beat magazines and her pointing out excitedly when she laid claim on someone as her “boyfriend”.

I remember a bus picking her up in the mornings to take her to school, but I couldn’t go because I wasn’t old enough yet. I was fascinated by her notebooks.  She would often sit for hours filling pages and pages of spiral notebooks with what appeared to be cursive or shorthand, but I didn’t know what it said because I couldn’t read yet.

I vividly remember one particular day in my life with Rhonda.  We were tumbling and turning summersaults in the living room, and I noticed that Rhonda wasn’t doing them correctly. I would demonstrate for her, and I remember saying to her with frustration and confusion, “You’re older than me so you should be able to do these better than me.” Hattie who was in the next room and overheard our exchange came and sat down beside me on the sofa and asked, “Leslie, hasn’t your momma or daddy talked to you about Rhonda being different? She may be older than you, but she can’t do some of the things that you can do.” Different? Even though I was too young to truly comprehend what she was saying, that moment was pivotal.  On that day, my innocence was lost and the world looked different.

What I grew to learn was that Rhonda had been affected with mental retardation.  That’s what we called it back then. Today, we have progressed to terminology such as Intellectual Disability or Developmental Disability.

Growing up with Rhonda had a profound effect on my life, my personality, and my heart, and 25+ years later when I learned that my unborn baby would be born with a profound intellectual disability, I realized that Rhonda had been more than just my childhood friend; she was my heart’s greatest teacher.

Walk ‘n’ Roll for HoPE

13 Oct

Some people travel to Boston or NYC for marathons, but I’m traveling to Phoenix/Mesa, Arizona next month for the “HoPE Walk ‘N’ Roll” to support Families for HoPE. AND I NEED YOUR HELP!

Several months ago, my friend and fellow HPE mom, Heather Dawn Rinard began planning a fundraising walk to raise awareness of Holoprosencephaly in the Phoenix area where she lives. She recruited other HPE families in Arizona to join her, and they are planning and executing a fabulous event to be held on Saturday, November 9.

Heather committed to this event several months ago; however, in August, she learned that she has Stage IV cervical cancer. As a mother of four (one with HPE), she has begun chemo therapy which will give her more time. The doctors have told her that she will not survive this, but the chemo can give her precious time with her husband and children. After receiving the diagnosis, I asked Heather if she wanted to cancel the event because terminal cancer and chemo would more than qualify as a viable excuse to quit.

Heather is not a quitter or an excuse-maker, and she fully intends to continue with this event on November 9. I will be traveling to Phoenix for a week next month to support Heather’s fundraiser, but I will also be there to help with any tasks that are needed to lighten Heather’s load and help make the event everything she imagined it could be.

Since she joined the board of directors of Families for HoPE in 2015, Heather has been my right-hand and go-to person–especially during our social media campaigns for HPE Awareness Week, Brackets For Good Tournament and Giving Tuesday promotions. You may have even seen some of our Facebook Live broadcasts. Whenever I have issued a call out for help, Heather, without fail, responds with, “What can I do?”

HERE’S WHERE I NEED YOUR HELP . . . Heather has done so much to help me carry my load over these past few years, and I want to repay that by helping her carry her load now. Whatever she needs to make this event a huge success, I will be there asking, “What can I do?”

What can YOU do? You can make a donation to help my dear friend reach and exceed her fundraising goal and honor her commitment to persevere and HoPE in spite of life’s struggles.

https://app.99pledges.com/fund/hopewalknr1/leslie-harley

Thank you!

 

HOCKEY!!

4 Apr

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Next Wednesday, April 10 marks what would have been Sammy’s 16th birthday.  Yesterday, we had a unique opportunity to memorialize Sammy, so we took advantage of it.  We painted his name on the ice at Indiana Farmers Coliseum located at the Indiana State Fairgrounds, and it will be there tomorrow as the Indy Fuel plays the final home game of the regular season.

When the Indy Fuel hockey organization was formed five years ago, Steve and I were there for the first puck drop.  It was also my very first hockey game.  I grew up in Indiana where basketball reigns supreme and where professional football has only existed since 1984.  Aside from putting the puck in the net which is tended to by a goalie and the tendency for fights to break out, I knew nothing about hockey.  After that first game, I was a hockey fan!

We have attended several games during each of the five seasons, but we made the decision to become full-season ticket holders (36 home games) for the 2018-2019 season.  Steve and I have enjoyed the season so much.

When I imagine what our current life might look like had Sammy not been born with HPE, we would be teaching him to drive a car in preparation for his drivers license.  We would have been dropping him off at school dances, taking him to baseball practice and scheduling orthodontic appointments.  He likely would have been looking for a summer job, and hopefully would have been described as responsible, respectful, and fun-loving.

IMG_4896 (2)But we aren’t doing those things because he isn’t here, and he never had a brother or sister to help fill the empty space left behind.  Instead, we go to hockey games, and Sammy goes with us in our hearts.

On game nights as I walk down the main concourse outside the Coliseum, I remember pushing Sammy’s wheelchair in that very spot and stopping to tie a green helium balloon to his wrist during the Indiana State Fair.  As we park by the Arts building, I remember taking Sammy into that building because it was air conditioned and how we placed wet paper towels on his arms and legs to try to cool him down.  As we pass by the Cattle Barn, I remember how engaged Sammy was when watching the dairy cows.

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As I sit in my seat at each and every game, I look across the ice and remember where we sat together for the circus.  Because of Sammy’s wheelchair, we were able to sit in the handicapped section right down on the floor where the ice is now.  You can’t even begin to imagine the fear I had as I watched the lions and tigers being led in and out of an opening that seemed way too close for this momma’s comfort.  And, I remember watching his fascinated reaction to the performers in the motorcycle cage (aka “globe of death”).  It freaked me out, but it was his favorite part.

In the past 16 years since Sammy came into our life, I would have never predicted that hockey would help sustain us in the grieving process, but no matter the cost of parking and tickets, this hockey season has been priceless.

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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

One of these days . . .

8 Jan

Whenever I listen to this song by the Christian contemporary group FFH (Far From Home), it always makes me think of Sammy and others who are challenged by physical bodies which limit their abilities and freedom.

One of these I’m gonna fly
Over the mountain
One of theses days I’m gonna ride
On the silver lining
One of these days I’m gonna witness
All I’ve been missing
One of these days

One of these days I’m gonna do
All the things I’ve never done
I’m gonna finish all the races
That I’ve run but I’ve never won
I’m gonna see a million faces
And recognize every one
One of these days

One of these days
I’m gonna see the hands
that took the nails for me
One of these days
I’m gonna hold the keys
to the mansion built for me
One of these days
I’m gonna walk the streets of gold
that were paved for me
One of these days
I’m gonna see my Savior face to face
One of these days

One of these days I’m gonna see
Just what became of me
On the day that I believed
And you took myself from me
And I believe that I will see
What I’d have been if you didn’t save me
One of these days

One of these days I’m gonna talk
With all the saints that have gone before
In their sandals I will walk
And we will sit upon the shore
And I will learn all the things
That I never knew before
All this and more

One of these days I’m gonna be
In a place where there’s no more need
No more pain and no more grief
No more foolish disbelief
Ah the joy that there will be
When at last we finally see
One of these days

I’m gonna see my Jesus face to face
One of these days

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!

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!

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