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Wheelchair

6 Apr

Sammy’s birthday is on Friday, April 10; it would be his 6th birthday.  It’s difficult to believe that this is the second birthday we have celebrated since Sammy went to heaven.  Last year, we went out to lunch with family members and the nurses who cared for Sammy in our home.  After lunch, we all gathered at Sammy’s preschool as his teachers and classmates joined us in releasing balloons in memory of Sammy.  A few days after his birthday, we also attended a concert by Chris Rice, one of Sammy’s favorite singers/songwriters.

Over the past few weeks, Steve and I have been trying to determine how we might honor Sammy’s birthday this year.  We finally decided to take a road trip to West Virginia to make a special delivery to David, a little boy with HPE.  We will begin our trip on Friday, Sammy’s birthday.  For the past year, Sammy’s wheelchair has sat empty, and we have decided that it’s time to give the wheelchair a new home.  David needs a wheelchair, and we think Sammy would be happy if he knew that his “Cadillac” will be going to another little boy.

It hasn’t been easy to let go of Sammy’s things.  We don’t hold onto these things because of their material worth, but so many of Sammy’s things hold such memories for us.  Many sweet memories surround Sammy’s wheelchair.  Sammy’s wheelchair allowed him to roll down Main Street at Disney World.  At preschool, all of Sammy’s classmates would gather behind his wheelchair, and they would give Sammy a group escort to his awaiting school bus.  Because Sammy never traveled lightly, it wasn’t uncommon to lift Sammy out of his chair, and then see the the entire wheelchair tip backward without his weight in the chair to counter balance it.  Before we give it to David, I may even have to let someone push the wheel of the chair over my foot one last time for old-times sake!

On the night that Sammy passed away, it was so very strange for us to drive home in the van with an empty wheelchair sitting in the spot where Sammy should have been sitting.  Sammy’s wheelchair sat untouched for nearly 10 months as I just couldn’t bring myself to go through the storage pockets and remove the supplies and items that we had stored there.  Even a year later, I still haven’t gotten comfortable in walking through the front door of church without pushing that wheelchair, so Steve and I have found that if we enter and exit through a side door, it doesn’t feel as unnatural to us.  Some of my identity was wrapped up into that chair because everyone just automatically knew it was Sammy Harley rolling through those doors on Sunday morning.

But now, it’s time to let go, and the wheelchair is our first step.  Sammy’s journey has ended, but the journey for David is just beginning.  We’re excited that David’s family will be able to use our gift to make special memories with their son.  Maybe it will even make a return trip to Disney World one day!

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!”

Adrenaline Junkie?

22 Jun

As the HPE conference draws near, a lot of thoughts begin to come to the surface. I’m so excited to see the HPE families; some of them I have already met, so it will be a joyous reunion. Others, I will be meeting for the very first time–even though I feel that I already know them so well. There’s a special bond I feel with these families because they truly know what it’s like to walk in my shoes. They speak my language, and they know where I’ve been because they have been there too.

Of all of the children I’ve known with HPE, there is one particular child who was the most like Sammy in nearly every way–almost constant seizures, medically-fragile and very complex. When I would reach the end of my rope and had alleviated all of my other resources, his mom is the one I would seek. She had a few years of experience on me in the complexity department, and I could ask her the difficult questions that no other parent or doctor could answer for me. Whether she knew it or not, I seemed to reach out to her when I was in my darkest hours and most fearful of losing Sammy. Her son passed away three years ago at 4 years of age, and his death was so very upsetting to me.

After Sammy passed away, she made a comment that sticks with me. She said that following her son’s funeral, after everyone had gone home, she remembers being completely exhausted. Four years of constant stress, worry, and caregiving took every bit of physical energy she had. In those four years, there wasn’t time to rest. When others routinely asked her how she did it, she always said that her son came with adrenaline. I can almost picture the scene–“Here’s your new baby along with a four year supply of extra adrenaline because you’re gonna need it!”

Last week as I talked with our grief counselor, I realized that my four year supply of adrenaline gave me the physical energy to keep going every day in order to keep up with Sammy. As I thought about it, I began to see how Steve and I learned to thrive under pressure. While in crisis mode, we were on our game. As I prepare for this HPE conference, I can sense that same adrenaline pushing me and enabling me to complete tasks that otherwise wouldn’t be possible. That’s where I’m struggling–I’m a planner and a list maker at heart; it’s not in my nature to “fly by the seat of my pants”, but that seems to be my middle name these days. I’m temporarily stuck in the “Tyrany of the Urgent”, and it’s those urgent matters that are propelling me forward. The adrenaline rush comes when the urgency strikes, but have I become an “adrenaline junkie” able to function only when my back is against the wall? If so, I’m in serious trouble because it’s not healthy!

The good news is that after the conference, I will be able to take a deep breath and slow down a little. The best news is that my way of coping is to turn to Jesus who said, “Come to me all you who are weary and burdened, and I will give you rest.” Sweet rest!

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