Providing moments of calm in the storm of caring for a medically fragile child
Ann Schrooten is the founder and president of The Willow Tree Foundation. She has a tremendous gift to give, but is faced with an interesting challenge. More often than not she has to convince the parents who have been referred to her to take what she has to offer: time for themselves.
“That is part of my mission, to help parents understand that self-care is not selfish, it’s necessary for their own wellbeing and the wellbeing of their child,” says Ann. “As they tell us when we are on an airplane, you have to put the oxygen mask on yourself first before you help your child with their mask. The same principal applies to our parents. They have to take care of themselves in order to have the physical and mental strength and stamina to take care of their child.”
The Chandler nonprofit organization funds the cost of respite activities for parents of a medically fragile child. This means that the child has a condition that requires 24-hour monitoring and supervision to prevent life-threatening complications, prevent health deterioration, or to maintain status. Families are referred by professionals who are a part of their care team, such as a doctor, social worker or therapist.
The Willow Tree Foundation will do things such as pay for a two-night stay at a resort, cover the cost of spas services, and provide a gift card to help with meals. They’ve given concert tickets and gym memberships. The foundation also offers day retreats and events for moms and dads for shorter periods of time, and separate events for parents so one can stay home to care for their child.
These activities provide much needed rest and a safe place to share, laugh and cry about things only someone who’s also walked their path can truly understand.
“There are no eyes looking away, changing the subject or avoiding the hard stuff,” explains Ann. “Parents of medically fragile children don’t typically find each other in their neighborhoods, on the ball field or at the school carnival. They are in their homes suctioning airways, feeding their children through feeding tubes, and flushing central lines. They are pacing in surgery waiting rooms and sleeping on plastic chairs in PICUs. It takes herculean efforts, all the stars to align just right, and a lot of nudging for these parents to take time for themselves.”
Ann knows firsthand about caring for a medically fragile child. Her inspiration for starting Willow Tree was her son, Jack, who was born in 1998 with a rare congenital muscular dystrophy.
“While life with our children is difficult, it is also filled with profound love, immense joy, and ever-present hope,” she says. “Jack radiated love every day of his life. A little boy who spoke no words, spoke volumes by the way he lived each day. He faced the hardships of his life with unprecedented joy and grace, and he challenged me to do the same. Jack introduced me to the amazing and resilient families the foundation serves. He has given my life such purpose and direction and, even in his absence, he continues to guide me with his beautiful spirit.”
Jack passed away in 2014 from complications of his disease, 10 years after he inspired his mom to start the foundation.
When Ann envisioned what life was like for parents such as herself, the image of the willow tree swayed in her mind. Like the tree, these parents are ever bending, never breaking.
Learn more at WillowTreeFoundation.org and on Facebook.