On Monday evening, we opened our home to a new set of ‘medical students’. We have been part of a seminar run by UMDNJ for over 10 years (on and off). The students are 3rd year students participating in a pediatric rotation during which they will receive training in treating patients who have disabilities. As part of the seminar, they are required to visit the home of a family raising at least one child with special needs.
I do this because I feel that it is so important for these soon-to-be doctors to cross the threshold from the clinical into the personal. I like them to see who we are, how we live, and what we need from the medical community. I hope that telling them the stories of the difficult beginning as well as what challenges we expect to face in the future will leave a lasting impression on them.
Three young men who we’ve never met before walked through our front door into our “you-get-what-you-get” environment. They walk in to video games and dinner prep and having to step over toys and dodge nerf bullets. During dinner, the guys ask lots of good questions. Did we know Ethan had Down syndrome before he was born? Who gave us the news and could it have been done better? What are all Ethan’s diagnoses? What were the early years like? How do the boys interact? What do we hope for his future?
I make sure they all have two big plates of chicken parm and I never tire of telling them that we need doctors who will listen, doctors who are human. I share with them some of our lowest points, personal things. I tell them that there were things that were and still are very hard. I tell them not be afraid to be optimistic and encouraging to new parents. I tell them that although they will be treating children during all types of difficult times and terrible illnesses, that raising children with special needs can be a gift.
I remember lots of our medical students over the years. I hope that they remember us and that it changes how they deal with another family who needs compassionate medical care or a family to whom they need to share difficult news with. Mostly, I hope they will remember how much we adore Ethan.