Archive | July, 2008

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!”

Michaela

15 Jul

Over the weekend, I had the opportunity to be in the presence of 35 miracles! 35 individuals who were born with Holoprosencephaly. Each of these 35 had only a 3% chance of surviving to birth, and each has defied all odds and predictions by the medical community. I loved it when one of these miracles would reach out to me. Some would reach out with their hands and arms, others would reach out with their voices, and others had only the ability to reach out with their eyes. But, they all touched me! They touched a place deep within my heart, and that is where I get my strength and courage to continue on.

One in particular touched me deeply. 14 year-old Michaela didn’t speak, but she communicated her love. As she came to realize that our time together was coming to an end, Michaela began to cry. Not the type of crying that a small child does when he isn’t ready to leave the playground—instead, these were the tears of sadness. The tears of a young woman who understands that she will be leaving people who love her for who she is, and people she may never see again. Her tears were no different than my tears, as we both had the realization that we had experienced something special that we didn’t want to end. As I held her hand and stroked her hair, I savored the moment as I knew that I had been touched by a miracle.

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