Our daughter Wendy has such a funny sense of humor! She is entertaining and very interesting, but she is hard to get to know because she is nonverbal. Well, she’s not completely nonverbal. She does say one word, “Mom”. Wendy also knows about 6-10 words in sign language. Of the few words that Wendy signs, she will sign “dog” when she sees a dog. Well, one day we were sitting together, and we asked Wendy, “Who is this?” as we pointed to her mom. Wendy said “Mom”. Then we asked Wendy, “Who is this?” as we pointed to me, her dad. Wendy smiled at me and since she is unable to say the word Dad, she signed a word. The word she signed was “dog”. Wendy laughed and laughed at her joke.
Since Wendy is nonverbal it is hard to see what is going on unless you pay attention, which is why we love Jill’s House so much! Wendy’s Direct Support Professionals are always paying attention to her. Wendy would probably say her favorite thing about Jill’s House is that she gets her own personal friend for the weekend; a friend who plays with her goes to the different rooms with her and spends time with her. It’s a special time for Wendy!
Our family lives north of Baltimore, so we are only able to participate in Jill’s House Weekend Program. We would love to participate in Jill’s House Moms or Jill’s House Dads events, but we are just too far. But what we can participate in is so worth it!
When it is a Jill’s House weekend, we have learned to pack her suitcase while Wendy is at school. We pick her up from school and drive directly to Jill’s House. It might take us 2-3 hours to get there on a Friday afternoon, but she is so happy to learn that it’s a “Jill’s Weekend” she will sing the entire way. Even though we can’t make out the words she is singing, we know it is a very joyful tune. On Sunday when we pick her up, she is happy to see us, but there is no comparison to the joy she shows on Friday when we are dropping her off.
I am the secretary for the PTA at Wendy’s school and oversee the emails that are directed to the Board. About 8 years ago, a new family had moved into our community and had asked if any places offered respite. The President said that the family should contact Jill’s House. I had never heard of Jill’s House at that time, so I decided to look into it as well. We took a tour and fell in love with it! Wendy was about 5 years old at this time, so we got her on the waiting list so she could go when she turned 6 years old. She’s been going to Jill’s House ever since!
While Wendy is at Jill’s House, we enjoy doing activities with our 16-year-old daughter. We may choose to travel out of town, stay home and watch a movie at night, or simply sleep in. Our whole family is very active, and we are always together, but we also know that our activities can get boring for Wendy. Jill’s House is a break in our routine and very exciting for her!
Wendy has an iPad with a communication app called Proloquo2go. The app came with basic buttons for Wendy to communicate with us, and we have logged in to customize buttons for family members, school, and vacations. We have a whole page dedicated to Jill’s House!
In 2020 we went on a Jill’s House Family Retreat. We all had a great time! The Jill’s House shuttle bus was there, and since Wendy loves buses, we would often visit the bus throughout the weekend. I took a picture of the logo on the bus, and that is the picture we use on her iPad button for Jill’s House.
We know a lot of families with children who are medically fragile, families whose caregivers are battling sickness, and even some families who have lost their children. Some of these families, we know very well. And while they are waking up every morning in what can seem like really difficult circumstances, they still get up each morning. It’s so good to have perspective. So, we have a family motto. “Get up and do it anyway!” It might be hard, and the days might be long. But we only have one choice. So, get up and do it anyway.
What we want for Wendy are meaningful days, and that’s what Jill’s House does for her. We know that Jill’s House focuses on giving the kids like Wendy meaningful days.
Thank you for making stories like Wendy’s possible.