7/14/08 - 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.
7/15/08 - 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.
7/21/08 - 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 “dear 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!"
7/27/08 - 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.