A Life as Mark Zulauf
Francine
Mark was expected in January but was born on a stormy December night in 1991. The doctors tried to send me home; complaining that, “it was too early”. I said no, I’m staying. I gave birth later on.
Two days went by in the maternity ward. Every time I nursed him, he would stop and gasp for his breath. His big brother had never done that. I mentioned it to the nurse.
Then after his circumcision, the doctors brought us to the nursery. They had explained that Mark was not well. When I saw him, I fell to my knees.
So MUCH medical equipment around and connected to my baby’s tiny body.
Mark had to be transported by helicopter to Children’s Hospital of Philadelphia. We followed in the car. CHOP would become our home away from home.
By the time we got to CHOP, the experts had a diagnosis: Hypoplastic Left Heart Syndrome.
We were given three options:
Three surgeries over about two and one-half years with a 70% chance of survival
A heart transplant (if not rejected and if we get one in time)
Take him home and make him comfortable.
We chose the three surgeries and Mark did remarkably well. Then nine years later in the Spring of 2004, Mark got a virus. Then his little tummy swelled with fluid and the cardiologist diagnosed Mark with Congestive Heart Failure. He confidently gave Mark medication.
But his recovery was not meant to be. Mark’s next challenge was a heart transplant. He received the transplant on November 4, 2004. It was his grandfather’s birthday. We were one of the lucky families: we were home in five months. There were good days, bad days. During that time period Mark made many friends. He had many interesting experiences like music therapy (playing guitar). He also lost a beautiful little friend: Maya.
Mark finished High School and now works at Marshall’s department store. Marshall’s has a program to hire special needs people. Mark has enjoyed working there for eight years. He is very fond of all of his co-workers, especially the members of his department.
He is also a member of Shining Stars, a performing group that creates shows of singing and dancing and in doing so the group makes friends and grow as people. It started as a special needs group and has now expanded to include all abilities.
Mark’s experiences with special needs and health challenges have not made him an angry, bitter person. On the contrary, Mark wakes up like he did as a baby: with a smile on his face ready to embrace the world. He was voted “Friendliest” in Kindergarten”. He is a devoted, faithful friend. He gives to others generously. He has many interests. He enjoys music of many genres. He likes country music (old and new), heavy metal, classic rock. He enjoys watching baseball, collecting baseball cards, memorabilia. He likes car models. His room is filled with his interests.
He just embraces life.