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Kindergarten

11 Aug

As much as I try to avoid thinking about it, this week is a difficult one as most of the kids in our area are headed back to school. This year, Sammy would have begun kindergarten.

Just before he passed away, we had begun the early discussions about the possible options available to him. We had hoped that his preschool teacher might also be his kindergarten teacher because she is such a great teacher. Last year, the children in Sammy’s class found a cricket in the classroom, and because they were interested in crickets, his teacher incorporated a cricket theme into their weekly lesson. They learned about crickets–where they live, what they eat, how they make their sounds–and they made their own cricket representations using tissue paper, pipe cleaners, and egg cartons. One little cricket managed to find its way into the classroom, and because his teacher was inspired, Sammy learned all about him.

Last week when I had trouble sleeping, I stayed up late watching TV in the dark. Suddenly, I felt something fall onto me, and I looked up to see what it might be, but of course, it was dark so I didn’t see anything. Still not feeling comfortable about what it was and fearing what it could be, I began investigating, and that’s when I saw the culprit on the carpet. A big ol’ cricket! I’ve since found three crickets in the house so far! Sammy may not be going to Kindergarten this year, but I think he’s still playing the role of class clown by pulling pranks on me!

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!”

Five things from the HPE conference . . .

14 Jul

We just wrapped up the HPE Conference, and there’s so much to tell. I’ll share more in the coming days, but here’s a few things that are especially memorable to me:

1. Sammy has a twin, and his name is Andrew! Prior to the conference, I had never seen a picture of Andrew, so I had no idea that he was a Sammy Yammy impersonator! Steve and I were able to spend a little bit of time cuddling with him, and we both intend to visit Andrew in West Virginia for more one-on-one cuddle time with him. As soon as I have a photo of him, I’ll have to share it.

2. My van was used for transporting several of the families to and from the airport, and it gives me a warm feeling whenever I drive my van now knowing that such amazing families and living miracles have had a presence there.

3. Gas prices need to come down so that I can hit the road and visit some of our families. With 43 families in attendance, it was difficult to spend much one-on-one time with anyone. Of course, two moms and I did stand outside our hotel rooms talking until 3am on Saturday morning, and that seemed to be the best way to catch me.

4. One of the siblings gave me a beaded bracelet with the word “HOPE”, and she told me how much she missed Sammy. Another sibling told me that Sammy meant a lot to her.

5. I’m exhausted, but fulfilled.

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