WHITE BEAR LAKE, MINNESOTA — Hugh and Pat from White Bear Lake, in Minnesota have two daughters with Down syndrome, but they are exhausted. Having not slept through the night for a decade because of the demands of disability, this family was in desperate need of respite. Through the Joni and Friends Respite at Home program, Pat had a chance to breathe! This new program gave the whole family the encouragement they need to keep going.
Hi I’m Hugh Maetzold. This is my wife Pat. We have two daughters aged 11 and 9, Bethany and Lily, both with down syndrome.
We don’t really feel like our family’s all that interesting or special. We’re just a family.
My background is a physical therapist and I thought I knew what it was like to work with people with disabilities. When Bethany was born it was a completely different story and I everything I thought I knew got thrown out the window.
Our typical day we’re getting them up. They need help getting through the morning routine of getting dressed and every little detail they need to be reminded of right now. One of our educators one time said they don’t just pick up on things that typical developing children would normally pick up on.
Everything has to be taught. How to eat with proper manners and to go wash their face or wash their hands. It doesn’t stop. They don’t outgrow that need for 24 hour vigilance. 11 years into it and our kids still get up at least once a night and so we tend to be exhausted parents as well.
We get the question ‘how do you do it all? How do you work at home and all of that? And you just have to redefine what “all” is.
Before we were married I volunteered with Joni & Friends in a couple of different capacities and I never expected to be on the receiving end of the gifts that Joni & Friends offers to families with disabilities and I never realized the impact that the volunteers and the resources and the organization as a whole is for those impacted with disabilities.
The Joni & Friends Respite at Home program has been sending interns to our house. About once a week they come for three hours and they do a lot of different activities with the girls, giving me some respite and giving the girls some enrichment. The respite just gives me a chance to breathe a little bit.
Justin Hanson, University of Northwestern Nursing Student, Respite at Home Intern:
Once given the opportunity and once you step into the household you get so much out of it. It’s so empowering as a student to get to see how empowering it is for a family. You get to see the parents. They get to step away. They go on things like separate vacations. They can’t just both leave and we can tell that’s very meaningful for them and they benefit greatly from it.
Lilia Silva, University of Northwestern Nursing Student, Respite at Home Intern:
We bond with the parents. We bond with the families. In the end I think I learn more from them than what they learn from me.
Experiencing what life is like in a different household really is a building block in opening the eyes of our visitors.
We will not change a thing because as much as have to invest into our kids, we see God’s grace pouring out through them. My faith has grown more since being a parent of children with special needs.
I think the Respite at Home program has been a fantastic new addition to the services that Joni & Friends provides.
About Joni and Friends
For 40 years, Joni and Friends has provided the hope of the Gospel and practical resources to people affected by disability around the globe. Ministry programs include Wheels for the World, Family Retreats, the Christian Institute on Disability, and church ministry training. Joni and Friends also delivers inspirational media such as the Joni and Friends radio program and podcasts. To find out more, please visit www.joniandfriends.org.
- Global News Alliance, Minnesota Family with Special Needs Children Finds Rest and Enrichment
- Joni & Friends, Official Website