Sammy Yammy and HoPE

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.

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.

In all of the stress and craziness of planning for the HPE conference, some very good things have come out of it.  Today, I talked on the phone with seven different HPE moms representing the states of Illinois, Michigan, Ohio, Indiana, South Dakota, and Oklahoma.  I love talking with my HPE peeps!  In planning for the conference, I also have had the opportunity to talk with several of Sammy’s doctors who are involved in the conference in various capacities.  A lot of pediatric medical facilities use the phrase “family-centered care”, and often times, it’s nothing more than a marketing phrase.  Today’s conversations with Sammy’s physicians reminded me once again about what a great medical team we had caring for our son and the lasting bonds we have formed with them.