Ryan House Executive Director on Continuing To Serve Children with Life-limiting Conditions During a Pandemic




Eric: When we had you on the schedule this week someone asked what was Ryan’s House? Can you describe what Ryan’s House is?

Tracy: We provide respite, palliative and hospice care to kids and support to their families. So, if a child has what can be considered a life limiting illness, they’re not expected to live into adulthood, they qualify for up to 28 days a year for respite, which are short stays with us at our house at Thomas and Central. That way families get a little bit of a break. Those stays are short stays. It could be up to 48 hours. It could be up to a week. Just to give their parents or their caregivers a chance to take a deep breath, to spend time together, to spend time with their other kids and quality time with the family. These are kids with major medical needs and parents’ attention really is on that a lot of the time. This gives them a break to pay attention to other things, too.



Eric: You were telling me, 2020 was going great and things were going well and March happened. As the executive director, what was your mindset like trying to figure everything out?

Tracy: I like to have plans. So, as soon as we started to see what was happening in the community and in the world, we started to have conversations about “What did we need to do?”. It was clear from day 1 that we would remain open. Our clinical staff would remain working at the house, and we needed to figure out how we would do that safely both for our staff and for our patients and their families. That really became our first focus. How do we do what we do everyday, and our staff do it really well. How do we do that without really knowing what everyone is dealing with? We were still in that phase, do you wear a mask? Do you not wear a mask? 

Very quickly it became apparent we had to limit who was in the house. We sent home our development administrative staff to work from home. We sent our volunteers home, and they should be coming back this week. We are very excited because we haven’t had them in the house since March which has been hard but we’ve worked with some amazing partners who have helped fill the gaps too.



Eric: You said rain plan. You have that leader mindset. What was the rain plan?

Tracy: We actually had our largest fundraiser due for March 27th. By March 15th, it was pretty clear what was happening. 

We postponed the event till August to see how things looked and to make a decision on what August would look like. I joked we had Plan A, Plan C and we have about 600 versions of Plan B. Nobody really knew. 

We have a Gala in December and clearly we aren’t having 250 people in a ballroom, but we’re trying to come up with some alternatives. Are people going to be comfortable with that in December? What are our numbers going to look like in Arizona? There’s just so many things. I feel we’re back to that A, B and C plans.



Eric: As a planner, how challenging is it knowing that most of us right now are working, planning month-to-month, sometimes week-to-week. What’s that been like trying to communicate that message to staff?

Tracy: I think because we have the mission that we have…that makes it a little easier on a day to day basis because that’s the goal. We’ll figure out what we need to figure out to make that happen, but our goal is to be open everyday. 

…The things that keep you up at night as a leader are, where’s the money going to come from? We pulled off our event in August as a completely virtual event. We brought in less money than we would have in an in-person event, but we had less expenses so we almost came out even which we were thrilled with.



Eric: There are silver linings. You were saying for some, maybe funders have stepped away, others have stepped in right?

Tracy: Absolutely. We’ve been so fortunate in our community. We’ve had community leaders like the Virginia Piper Center who have really come forward and brought other funders with them to give out more money then they have budgeted this year to be able to support organizations like us and organizations throughout the state. And we’ve had individual donors who have done the same.



Eric: Ryan House is really well-known in the nonprofit community, and what have those discussions been like for you with other nonprofit leaders? What are you doing? How are you doing it? How are you getting it done this year?

Tracy: I find, the leaders I talk to are in the same boat. Either they provide a service that has continued the way it was, like we’ve had, or they provide a service that has pivoted to do it online or virtually or some form of that service. Luckily, I don’t know many who have had to shut down their programming. They’ve all figured out a way to make it happen. I think it comes back to the funding and how do you make that piece of that work.



Eric: How about the mindset too? People have this very optimistic mindset with everything going on. Despite everything that’s going on, it seems like that mindset helps everybody and propel your team through these very challenging times.

Tracy: …Everybody is committed to the mission. It would be easy to get down on things, but when you look at where we are headed, I think on some of this other stuff, the mindset is “we’ll figure it out.” We’ll figure it out because this is where we need to be. 

…Everybody is in a different place with this. Everybody is struggling with their own thing…Just having to keep in mind, you can’t get upset with somebody else right now no matter how much you might want to, but everybody is dealing with their thing.



Eric: How about you and that mindset transition? From March until now and looking ahead into 2021, Where are you at? 

Tracy: I never want to wear a suit again. I don’t feel like I have as many sleepless nights. I feel like we’re in our new norm. I feel like we still have a lot of unknowns on the finance side as far as how we are going to plan some events and where the money is going to come from, but I feel like if we keep sharing our story, the story of our patients and our families, I have faith that it’s going to happen. I know our community is amazing, and I know the people we work with are amazing. 

..When I stop, take a deep breath and have a little grace with myself, I realize that we are going to get there. It just may not look like it did before, and that’s okay.