Something to say . . .

10 Aug

There are times when I sit in front of a blank screen hoping for something profound or inspiring to write about, and nothing comes to me; therefore, I have nothing to say. Of course, I think it’s actually that I have something to say; I just don’t know how to say it.

At the HPE conference, I spent some time with 17 year-old Robert from New York. Robert didn’t speak verbally; however, he used an augmentative communication device to help him communicate. If you’ve been a Sammy fan for a while, you may remember that we were just beginning this type of communication with Sammy.

Like Sammy, Robert activated the device by moving his head to his left to press a special switch attached to his wheelchair. Robert gave me an awesome demonstration on how the device worked, and I was so impressed. Contained on the device were pre-recorded messages, phrases, and words; many of them were recorded using a masculine voice whenever possible because what 17 year-old boy wants his voice to sound like his mother’s? Visually, the top of Robert’s device contained words or pictures to represent the various words and phrases available. It was set up in a grid with 4-5 rows down and probably 8 columns across. Each square of the grid contained a little light, and Robert would watch as the device would light up each row. When the appropriate row was lit, Robert would turn his head and select that row. Then, the device would scroll through each square in that row and when the light came on at the appropriate word or phrase Robert wanted to say, he would turn his head to activate the switch. With that movement, the device would activate the pre-recorded word or phrase. Words, phrases, and sentences could also be added and recorded as needed to suit the situation.

Thankfully, Robert was patient with me. At first as he demonstrated the device, I would try to fill in the blanks of what I thought he was trying to say, but I didn’t always get it right. Finally, Robert activated a pre-recorded sentence that said, “It’s my turn to talk now!” I think my eyes bulged out of my head and my jaw dropped open when I realized that my friend Robert was politely telling me to “just shut up and listen”! (I have a feeling that Sammy was totally enjoying my moment of humility!) In that moment, I realized that Robert didn’t need me there to fill in the blanks; he communicated just fine on his own using all of his skills and abilities. He knew what he wanted to say, and he knew how to say it.

Recently, I’ve been listening to a CD by Matthew West, and the first track on the CD is a song called “Something to Say”. Every time I hear that song, I think of Robert. In those moments when I sit in front of the empty screen thinking that I have nothing to say, I think of Robert and what he would say if given the opportunity. Even though he is unable to speak, he certainly has something to say.

Laps 5 and 49

27 Jul

Last night, we were at the Anderson Speedway in Anderson, Indiana during the inaugural running of the Anderson 400. Laps 5 and 49 were sponsored in memory of Sammy by JNB Motorsports. JNB Motorsports consists of Josh and Bruce Timmerman. Josh’s mother, Debbie, was one of Sammy’s home-health nurses, and for the past two seasons, Josh has used his race truck to help raise awareness of HPE by displaying the Families for HoPE logo.

Last summer, Sammy was invited to Anderson Speedway to watch Josh race. To take Sammy to a race was definitely outside of our comfort zone, and there were a lot of questions we had to ask ourselves.

  • Sammy already had many seizures each day so how would he react to a loud, stimulating race track?
  • What about mosquitos and temperature once the sun went down?
  • Where would we sit and could we maneuver his wheelchair?
  • What if a piece of debris were to fly up and into our direction?
  • Who in their right mind would take their child with a trach to a dirty racetrack?

It took a lot of thought and planning, but we decided to give it a try. Early in Sammy’s life, Steve and I decided that we would try to give him as many opportunities and experiences as we could, so we took a deep breath and made plans to go racing. True to Sammy’s “predictibly unpredictible” style, he proved to us that he LOVED the entire experience–the louder and dirtier, the better! By the end of the season, Sammy had attended at least three different races.

This season, Sammy’s life has been remembered through a memorial tribute on the tailgate of Josh’s truck. As he puts in laps around the track, Sammy’s legacy lives on. The entire Timmerman family has been a wonderful support to us, and they have been there with us and for us time and time again over course of these past few years. When the opportunity presented itself for named sponsorships for the Anderson 400, they surprised us by sponsoring two laps in honor of Sammy’s memory and the gesture truly touched our hearts.

Opening Address for the 2008 HPE Conference

21 Jul

I wanted to share a little more about my favorite parts of the HPE conference. On Friday, July 11, I awoke at 3:10am. As I was trying to fall back to sleep, I had a sudden realization that I was scheduled in the conference agenda to publicly welcome and address the conference attendees during the morning session. I arose from the bed and stumbled in the dark to the desk in our hotel room. With only 2 hours of sleep and hardly the ability to even remember my own name, I sat down in front of my laptop and prayed for something meaningful to say to our HPE families who had traveled so far in their journeys with their children. The following is the answer to my prayer:

Welcome to Indianapolis! You may have heard of a little race we host known as the “Greatest Spectacle in Racing”.

I Googled the word “spectacle”; in general “spectacle” refers to an event that is memorable for the appearance it creates. This weekend, you are part of a spectacle—only this is the “Greatest Spectacle in HoPE”!

An uncle of mine would always say, “Let me put on my spectacles,” when he wanted to take a closer look at something. Let’s all put on our spectacles and take a closer look around this room. Do you realize that every single parent in this room has sat in a hospital room or a doctor’s office and heard the devastating news that their child had holoprosencephaly? 17 letters, 7 syllables, 1 word that would change everything.

Yesterday afternoon, I noticed two men entering the hotel lobby—one wearing a sports coat, the other wearing a very intellectual-looking bow-tie. They glanced around as if they were curiously looking for someone. I was anticipating the arrival of some of our conference presenters, and since they sort of had that “deer in the headlights” look on their faces, I timidly asked, “Are you here for our group?”

One replied, “No, we’re here to pick up a colleague for dinner, but we’re curious about your group.” I turned around so that I could see what they were seeing which was a hotel lobby filled with wheelchairs and people having a wonderful time—with laughter, smiles, and hugs.

I said, “It’s holoprosencephaly.” To which they both replied in unison, “Really?” In my mind, I was thinking, “They’re not here for us, yet they know what holoprosencephaly is? That never happens!”

So, I asked the obvious, “You’re familiar with the condition?”

What I discovered was that these two men specialized in oncology—and they were both OB-GYNs!

These two doctors walked through the hotel door seeking a colleague, and what they witnessed instead was a jaw-dropping, eye-opening sight. They didn’t see devastated families—they saw laughter and celebration. They saw children in wheelchairs who were smiling and were very much the center of attention!

Because you were busy enjoying yourselves, you weren’t aware of it, but they saw it! They walked through those hotel doors, and you all smacked them in the face with HoPE! So today I say, “Welcome to Indianapolis. Home of the Greatest Spectacle in HoPE!”

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