All posts by Stephanie

K IS FOR What I Know Now – A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

If I could go back 27 years to the day I found out that Josh had Down syndrome, what would I tell myself?

I didn’t know before he was born.  I didn’t know in the hospital.  I didn’t know the first few days as I was bonding with my baby.  That was a blessing.  I was a little bit afraid for his health because he had jaundice and had been under “the lights” in the hospital.  As a new, first time, young mother, I watched him like a hawk – keeping a hand on him even as he slept so I could feel his breathing. 

But I didn’t know the laundry list of possible health problems that would be presented to me in a few weeks.  I didn’t know the meaning of the words Down syndrome.  Heck, I don’t think I even really knew what a chromosome was.  I didn’t know what it felt like to really worry about my son’s future.

When I heard the words for the first time, I allowed myself to cry.  Once.  On the way home from the geneticist’s office.   

Then I went about the task of learning.  
Some things you can learn from others.  Statistics, probability, historic perspectives, can all come from books and “experts.”  
Best practices, health guidelines, suggested therapies – they’re all important and have their place.  As parents, we all look for this kind of knowledge, whether our child has special needs or not. 
But if I could tell that scared Mom, who wanted so desperately for her baby to be safe and healthy, one thing it would be this – 

“You know more than you think you do.” 


Maternal instincts are nothing to sneeze at when it comes to knowledge.  Doctors, family members, and the well-meaning “public at large” don’t know you or your child. 
 They can’t tell you how to love your child – and that’s what really matters most. 
The Road that is parenthood is a lifetime of learning, growing, and caring.  There are pot holes of fear, pain, and struggle to be sure, but those are just momentary bumps.  I’d tell myself not to get too caught up in the destination or how long it will take to get there.  

“Enjoy the ride – 

it’s the best one you’ll ever take –

and every inch is worth the trip!”

I IS FOR Invitation to Inclusion – A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Susan Holcombe

Today’s story comes from Susan Holcombe – mother of Rion.  

Do we have to be invited to be included?

One of my favorite things to see is when my son walks up on a group of teenagers “shooting hoops” and joins in.  Usually it’s a group of older teenage boys with four or five basketballs bouncing around.  Whoever catches the ball after it hits the rim shoots next.  

Here is what happens….Rion walks up with his lumbering, awkward gait.  The teens look at one another and then, as an act of kindness, toss him the ball.  The teens are kind, but they expect little.

It is more an act of charity rather than an invitation.  
Rion takes the ball, stands a good distance away, assumes a stance, eyes the basket setting up his shot, and sinks it.  The look of surprise on the other boys’ faces makes me grin.  I grin again as they toss him another ball as if they are thinking, “Okay, he got lucky the first time…..let’s just see if he can do it again.”  

Then one ball after the other, he sinks them from various distances.  The look of joy and amazement on the kids’ faces fills me with joy.  Rion isn’t trying to prove himself.  He is just enjoying the experience of playing with his peers.  After that, he is welcomed and he continues playing with the teens because he now belongs.  

Rion belongs because he has won their respect rather than their pity.

H IS FOR Heart Surgery – A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

My baby Weighed 18 Pounds and was almost two years old when I carried him into Children’s Hospital

Picture

The hardest moments I have ever endured, surrounded the days that lead up to and immediately followed my baby’s chest being cut open.


The moments of  
allowing,
needing,
hating
having his tiny beating heart in the hands of a surgeon,
a mere mortal.


It was almost exactly 22 years ago, he was Christened Easter morning, the day before his surgery. It was a shot-gun baptism.  I had him Christened for the sake of his grandparents and great-grandparents. I never believed that – if there is a God – he would turn away my innocent babe. However, my family needed the solace before Marcus went into the place where spirits don’t always return. I stood quiet and numb through the ceremony, filled with fear and when asked to answer: lying through my teeth.
In my mind I said,
No.
God cannot have this child.
Do not dare to take him from me. 

The next day, while I sat signing the eternal pile of paperwork and before I put my name to one more, I-understand-that-my-child-could-die and you-are-not-responsible, signature line, I looked at the nurse and said, “Tell me, again, why this is necessary.” 

As I remember, her voice was sharp, like a scolding teacher with a wrist whip, and she said, “Because if you don’t, the heart will continue to fail until he dies.”

“How long will that take?” I asked.

Again, in my memory here came a sharp sigh of judgment, or perhaps a sigh of I don’t have time for this, “We don’t know. He would maybe live to be 15 years old. And he could never have a good quality of life.” 
 
I nodded. I signed. And that night in the hospital all I could think was, What if he dies and I gave up the 15 years I could have had? 
 
Approximately half of all people with Down syndrome are born with a heart defect. Before heart surgery was available, this was the most  common cause of death for people with Down syndrome. Consequently, once heart repair and heart surgery became an option, the average life expectancy rose rapidly. 

Truly, heart surgery is a triumph.

Even if every time I write about those days, as I sit in a coffee shop, library, or home, I cannot stop the tears from coming and falling without care of who sees, when in truth it is because of heart surgery that Marcus is such a vibrant and strong adult. 

He graduated from the Madonna School a few years ago.
He threw dice on his 21st birthday.
Yesterday he posed for the next musical he is creating: “Great Day, the Musical” – in the spot where he sees the poster will hang. 

I am ever thankful that Marcus heart was mended and he has grown strong.
 


G is for Grandparents – A to Z blogging Challenge on The Road WE’ve Shared

Today’s post comes from Ethan Saylor’s paternal grandmother.  I’m so grateful to her for sharing her memories with us.

Ethan Saylor was the first grandchild for Bob and Dottie Saylor.  He had a special relationship with Grandma and Nanny (as he called Granddad).  Ethan spent a lot of time with them and Thursday nights were always Ethan nights.  His Mom or one of his caretakers would drop him off at their house and he would eat dinner with them.  Some of his favorites were pizza, rice and brownies.  He spent a lot of time at the head of the table, usually going through one of him many notebooks, or playing cards or board games.  Ethan loved to sneak food when he thought no one was looking.  Grandma often found Hershey Kiss wrappers hidden throughout the house after he went home.   Ethan loved to sing and play his harmonica.  On cold days, he could often be found sitting on the front porch on the glider playing his harmonica and singing at the top of his lungs.  Most of the time you had to listen carefully to understand what he was singing… one of his favorites was “Amazing Grace”.

F IS FOR Fashionable – A TO Z BLOGGING CHALLENGE ON THE ROAD WE’VE SHARED

By: Stephanie Holland

Fashionable

That’s Josh 
to a “T” !

Josh has always been able to express himself with his clothes.   He may not fully understand why you shouldn’t wear a leather jacket outside in the summer (it looks cool so what’s MY problem?) Sometime he doesn’t care about wearing a coat in winter – especially if it covers up his ensemble….  but he knows what he likes!  Right now – it’s two or more gloves (not necessarily pairs) with the fingers cut out – layered for effect – and whichever hat or wig suits his mood.  

Legal Issues

In the News

One of my roles here on The Road is to scour the news for stories that are relevant to our community.  I usually share them via “ScoopIt” and post them to our RebelMouse site.  Once in a while I’ll be particularly interested in a story and elaborate on it either on FaceBook or here, on my blog page.

Two recent articles about lawsuits that have been filed on behalf of people with developmental disabilities caught my attention.

Continue reading Legal Issues

E is for Ethan – A to Z Blogging Challenge on The Road We’ve Shared

Today’s post is written by Ethan Saylor’s Aunt Terri Saylor Wilson  (and one of my dearest friends!)  

Thank you Terri for sharing some of your special memories of Ethan with us!

For more information on the story, you can see our page on #JusticeForEthan,


This is my nephew Ethan Saylor.  I had the honor of being his aunt for 26 years before he died tragically in January 2013.  
I spent a lot of time with Ethan when he was younger.  I have so many great memories of Ethan when he was little… we use to go for car rides and listen to the Men in Black song by Will Smith.  He loved it, and the louder, the better!  He also liked going the the airport and watching the small planes take off.  
When my husband and I adopted our daughter, Macy and Ethan immediately formed a special bond that was just as strong as the bond Ethan and I had.  

E is Ethan, but E is also for everlasting…

This kind of love….

….is everlasting!!

Josh Gets it

Don’t underestimate him!!

One of my favorite things to do is to “eavesdrop” on the conversations that Josh has with himself, his “boys” (the stuffed animals he surrounds himself with) or the television.  As an only child, he’s had develop his own ways of entertaining himself, and he’s a pro at it by now.

Every now and then I’ll realize that I’ve heard him say the same thing before.  There’s one phrase that he keeps repeating on a regular basis “it’s a BABY talking!”   It made me wonder what the heck was going on so I decided to look into it.   Turns out, he’s talking to a commercial.

Continue reading Josh Gets it

D is for Determination – A to Z Blogging Challenge on The Road We’ve Shared

By: Susan Holcombe

Today’s story comes from Susan Holcombe – mother of Rion.  A video of Rion’s reaction to receiving the news that he had been accepted to Clemson University went viral.   He’s a true athlete (swimming, basketball, and baseball).  Thank you Susan for sharing another story with us!  (You can read more about Rion in two stories on our Guest Blog page.)

D is for Determination – to be 
on the team

When Rion was 13, he expressed to us that he wanted to join a basketball team.  Now, Rion is great at “shooting hoops”, but he knows little about passing, dribbling, fouls, outs, etc….But we never say no to Rion.  We signed him up for a Christian basketball program called Upward Basketball.  Some of the other 12 year-old boys on the team were very accepting while the competitive ones kept the ball from him. 
Game after game, Rion would be on the court with no one passing him the ball.  This frustrated him to no end.  Also, Rion is very sensitive to sudden loud noises and the buzzer scared him to death.  For this reason, he played with earphones on his head to block out the blaring noise.  I am sure this looked strange to the others.  It was during the third or fourth game that the coach encouraged a boy to toss Rion the ball.  
Rion had this special shot he would always make in practice.  He would always make it from the sides, just right or left of the basket, no matter the distance.  Rion was motioned to go to his “special spot” and sure enough, he made the shot!  From that game on, the boys would toss him the ball when they could and he made that basket over and over!  

At the end of the season, Rion was awarded the MVP for scoring the most points and for having a Christian attitude throughout each game.  The best part of this experience?  

When Rion made a shot, parents from BOTH teams stood up and cheered and he was always congratulated by the opponents at the end of each game.