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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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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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Dandelions from Heaven

11 May

Dandelions from Heaven (Author Unknown)

Mothers Day is coming…and I wanted to send you a sign…
Something you can tell others…”Is from an angel of mine”.
So I searched the Heavens high and low for that perfect thing…
And low and behold I found it….and a smile I hope it will bring.

So when you look to the Heavens and see the yellow stars in the sky.
Just think of me…your angel…in the Heavens way up high…
And just imagine those stars…are dandelions up above…
Yes! Dandelions are also in Heaven, which you know how much I love.

So on this Mothers Day…when you awake and feel blue…
You will notice those yellow stars…are no longer in view…
So just look to the meadows and the dandelions you see…
Are the ones I’ve tossed down this Mothers Day from me!

And when you find a dandelion that has turned from yellow to white…
You’re supposed to make a wish…and then blow with all your might.
For you will be blowing kisses…to me in Heaven above….
And I will be catching them and blowing them back…sent with all my love.

Please know that I am with you…on this Mothers Day…
And also in the days ahead…God and I will never stray…
We will be with you in the morning…when you wake and see the sun…
We will be with you when you say your prayers…when the day is done.

For God and I will never be…very far from your side…
For I can now be everywhere…and God will be your guide…
So…remember when you see dandelions…it’s your guarantee…
That I am always close to you…For dandelions are free to roam…now just like me.

…brought to you by the number 9…

9 Apr

I was talking with some friends recently about how much we all enjoyed watching Sesame Street as children, so in that spirit, I thought I’d share some thoughts on the number 9.

Today is April 9, and in just a few hours, it will be Sammy’s 9th birthday.  Sammy lived 4 years and 9 months, and at some point during the next year, we will reach the day when Sammy will have been gone from us longer than he was here with us.  I know that day is coming, but I try not to think about it too much.  Instead, I choose to celebrate the anniversary of when that little miracle boy totally changed my life nine years ago.

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Always with me…

1 Sep

[His mother] kept all these things in her heart and thought about them often. (Luke 2:19; NLT)

I think of Sammy every single day, and quite possibly, I think of him at least once every waking hour of my day. Sometimes, I think of him for hours at a time. No matter where I am or what I’m doing, he’s never very far from my thoughts.

I’ve tried to find a way to describe what it feels like for me now, 3 years after his death. Although I can’t see him or touch him, I feel like Sammy is a part of every moment in my life. The best example I can give is early pregnancy–after the positive pregnancy test but before the fetal movements can be felt. From the moment of my positive pregnancy test, I was consciously aware that I was pregnant. Even though my mind might focus on whatever task was at hand, my thoughts would always drift back to the fact that I was pregnant. I could be typing at my desk, answering the phone, doing my job, but I was still keenly aware that I was pregnant. No one could see it, I didn’t feel it, but I knew that a new life was there. For those months I carried him in my body, he went with me wherever I went because he was a part of me.

Today, I can focus my mind on the tasks at hand; I can type at my desk, answer the phone, and do my job. I can drive in the car, shop at the grocery store, and do any daily task. All the while, Sammy is never far from my thoughts. In some ways, I could say that Sammy has simply moved to a new location in my body; I carry him in my heart, and he goes with me wherever I go because he is a part of me once again.

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