They’ll do whatever they can to get a smile out of her. You don’t get that just anywhere.
Sarah has been a patient at Bronson Children’s Hospital since about a year after she was born. She was diagnosed with 1p 36 deletion syndrome, which means she has chromosome deletion. She is now 14 years old. We’ve had years when she has had just one or two stays a year at the children’s hospital. This year has been rough, as she’s been hospitalized about ten times.
Sarah has a special relationship with many of the staff members here, especially Dr. Cameron. She even has a t-shirt with a picture of him on it! She also has a blanket with his picture and some of her other favorite doctors.
Sarah has had surgeries at other hospitals and it is just not the same as Bronson. When we are here they tell us the nurses are fighting over who is going to take care of Sarah. It’s a comforting feeling being here with the personal care that we get.
One of the things Sarah really likes is music therapy. When the music therapist’s name came up today she started signing that she was really excited for Suzanna to visit. On the days Sarah isn’t feeling well, Suzanna brings out a smile in her.
Because Sarah is non-verbal, sometimes new doctors or staff members didn’t know what to expect when they arrived at her room. The art therapist, Meg, created a sign to hang outside of her room so people knew some of her favorite things and they would know a little bit about Sarah before they walked in.
I’m on Bronson’s Patient and Family Advisory Council, which gives me an opportunity to give input on things that families experience here that could be improved. I think it’s a great thing that Bronson is truly listening and taking things into account and validating what I’ve said.
The staff here really is very caring. One night Sarah was in pediatric intensive care and couldn’t sleep. So, we decided to have a dance party in her room. The nurses all took part, then the next day, the day shift nurses wanted in on it too. They know how to have fun here. They aren’t afraid to put themselves out there. They’ll do whatever they can to get a smile out of her. You don’t get that just anywhere.
To support programs and services at Bronson Children’s Hospital, sign-up for or donate to the Bronson Children’s Hospital Run & Walk, on Sunday, September 30, 2018.