Transcript of Horstmeyer Family Video

Narrator 1: Home video of a boy sitting on the carpet clapping and kicking.

Dad: [Reading] ...pushed his way out and he was a beautiful butterfly.

Narrator 2: It's story time for five-year-old Samuel Horstmeyer, and with every word his dad reads, Sam becomes more animated.

Erin Horstmeyer: When he is happy, he is just, he can't contain himself. He just is overjoyed and his smile, you know, it could be a tough day and you know, you can get up and keep going, and he gives you that smile and it's worth it, you know, to be up all those sleepless nights.

Narrator 2: Unfortunately, the number of sleepless nights has been many for Sam's parents, Erin and Jeff. The Horstmeyer's only child requires round-the-clock care. Sam was born with an autosomal recessive form of microcephaly, a condition marked by a small head, severe developmental delays, blindness, and other challenges.

Erin: So not only is he born with a very small, underdeveloped brain, you know, that's put him way behind in life, he has this visual impairment that's also put him that much farther behind.

Narrator 1: Sam sitting in a wheelchair.

Narrator 2: Sam also struggles with a complex seizure disorder that is difficult to control with medicine. At times, Sam can have multiple seizures in one day or clusters of seizures over several days. Caring for Sam has brought hardship because Sam will only sleep in an upright position. Erin and Jeff have alternated sleeping in this recliner with him every night for five years.

Erin: We do what we have to for Sam. We both love him so much and obviously my husband is the one that is in last place all the time. Sam requires so much care.

Narrator 2: Sam began receiving support services at 18 months and in the fall of 2007, began kindergarten in his community of Sioux Falls, South Dakota, an event which became a key post of the family's blog site, Horstmeyer Happenings. Erin says it has been a battle nearly every step of the way to secure the educational and occupational services Sam requires.

Erin: We really put our foot down and Sam did end up receiving the services that he needed, and they also learned that we are a family that isn't going to be walked on. We're a family that's going to be there to say, this is what our child needs and this is what his rights are, and he should be receiving these services.

Narrator 2: The Horstmeyers acknowledge that the pressure of caring for Sam has been overwhelming at times. Jeff became anxious; Erin, usually cheerful, turned morose and felt she was losing control, especially as her home became invaded by therapists, home health aides, and even well-intended church parishioners dropping off a meal.

Erin: It's just constant revolving door of people—some that you know really well and are very comfortable answering the door in your pajamas—and others that you don't know very well and you still have to answer the door in your pajamas because that's what your life dictates.

Narrator 2: Erin says antidepressant drug therapy has helped her regain control, but challenges persist. Caring for Sam is physically demanding as well. His wheelchair weighs 60 pounds and he weighs 45 pounds and growing. When we spoke to Erin, she was recovering from her third foot fracture, resulting from either losing her grip on Sam's chair or landing on her foot improperly after trying to lift Sam. Husband Jeff has suffered back injuries.

Erin: Physically, he doesn't help at all, and is very, very wild and active, so when you're trying to lift the weight, you're also trying to control hanging on to him.

Narrator 2: Still, the Horstmeyers are extremely proud of Sam's progress. When he was born, doctors held out little hope for much of a future. Even though Sam doesn't talk, his body language shows he understands, especially when his parents read one of his favorite stories.

Jeff Horstmeyer: [Reading] Five little ladybugs.

Erin: A smile ear to ear, you know, hands clapping, legs moving, you know, we always say he shows his emotions with his entire body.

Narrator 2: In a positive development, the month after our interview, Erin and Jeff hired a nurse who stays overnight five nights a week caring for Sam. That means Erin and Jeff are getting more sleep and looking toward the future.

Erin: Some days you're just ready to have more children; other days you think, you know, Sam needs me and he needs my full 100 percent attention, and do I have enough in me to give him what he needs as well as raising another child?

Narrator 1: Photos of Sam standing and climbing stairs in a physical therapy room.

Narrator 2: For now, the Horstmeyers are content to savor every one of Sam's milestones. They are encouraged because he has once again begun taking steps with assistance, something that had stopped during his chronic seizure activity, and they never lose sight of the big picture. Parenthood does look different than they thought it would, but they wouldn't change it, though they acknowledge some parents might struggle to understand their world.

Erin: The hopes and the dreams we have for him may seem like they're minimal to many other families, you know, because most children—to typical families— because children learn to walk and they talk and they say, "I want a glass of water." But our hopes and dreams are just that he can have enough communication or those types of things, just to be able to have independence, what little bit it may be. We would love for him to be as independent as possible.

Narrator 1: Sam sitting in his wheelchair, clapping and smiling.