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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