Categories: Atypical Family Date: Jan 28, 2016 Title: Giving a Break
By Deborah Cavanagh
I picked up the phone and heard, “Debbie, it’s your Uncle Lou. I wanted you to know I met the people who run David’s Refuge. You know them too, right? You and Brian should take a weekend and get away. This is for families like you!
Ryan McVay | Getty Images photo
I picked up the phone and heard, “Debbie, it’s your Uncle Lou. I wanted you to know I met the people who run David’s Refuge. You know them too, right? You and Brian should take a weekend and get away. This is for families like you!”
Of course my Uncle Lou was absolutely right.
Warren and Brenda Pfohl started David’s Refuge in 2012 in honor of their son David, who passed away after a 13-year battle with Batten disease. They understand the stress, exhaustion, isolation and fear that comes with caring for a child with a life-threatening medical condition and special needs. They have walked the walk. Lived the life.
Their mission is to provide respite for parents and guardians of children with special needs in the hope they will be refreshed, restored and renewed in their role as caregivers. Close to 200 families have benefited from David’s Refuge in the past three years.
To accomplish this, the Pfohls partner with local bed-and-breakfasts. Parents are offered two glorious nights at no charge. The flavor of the weekend is driven by host couples, who are or have been parents of children with special needs themselves. The goal is to unplug, find rest, and restore the hope and motivation to press on in the task of caring for their families.
Why wouldn’t one jump at the chance for this experience? Well, I will tell you.
If you have a child with medical issues, you can develop what I call “hospital perspective.” While you may be facing challenges that seem insurmountable to the outside world, there is almost always a family in the next bed, or next room, dealing with something scarier.
Our daughter, Amanda, required heart surgery at 4 months of age. Then she developed complications. We were released from the cardiac intensive care unit after a couple days and sent directly to the pediatric intensive care unit at UCLA Medical Center.
I was feeling pretty mad at God and the world in general. Here was my 4-month-old baby, unable to get off a ventilator and possibly requiring more surgery.
Then I became aware of the family behind the curtain literally five feet from me. They were losing their teenage son. He had cystic fibrosis. I could feel their anguish. I could hear their cries. I knew the moment he died.
It was mid-December. Almost Christmas. Showing unimaginable grace and empathy, the mother came up to me as they were leaving and gave me a hug. She said, “Love your baby, she is beautiful. I will pray for her.”
I will never forget that. And it always makes me feel that no matter what I am experiencing, someone is in a more challenging place. Someone has a greater need. I cannot become so wrapped up in my day-to-day life to miss that.
And yet I believe people come into your life for a reason. That reason might not directly benefit you but in fact might be for others.
Warren and Brenda kept showing up at events I attended. These events all centered on special needs. Being braver than I, they eventually introduced themselves and told me of their mission. Their calling.
Not only have they created this much-needed respite opportunity, they are masters at sensing those who can be open to their charitable hospitality.
They understand parents must be reminded to take care of their relationship. They “get” that we ignore the toll our situation inflicts on us. That many need a guiding hand, or a gentle kick in the pants, to take a break, if only for a weekend.
Warren and Brenda know from experience the importance of quietly reading a book without half-listening to the baby monitor for sounds of distress. The restfulness that comes from a weekend of not doing middle-of-the-night bed checks. The connection that is re-established during a quiet, leisurely dinner for two.
When I run into them again, and I know I will, I will thank them for what they have created. And if you are so lucky as to be offered a weekend getaway at David’s Refuge, remember what my Uncle Lou said. Instead of feeling unworthy and making excuses, graciously accept. This is for families like you. Saying yes is for the benefit of your family, and your family includes you.
Deborah Cavanagh lives in Manlius with her husband and two children. She has written for local organizations supporting children and adults with special needs. Learn more about David’s Refuge at davidsrefuge.org.