5 Minutes that Changed My Life for the Better
This week, for the first time, I had the opportunity to be a guest blogger. (wow!) Pediatric Home Service (PHS) is a home health care agency that focuses on helping meet the medical needs of kids like Levi so they can thrive at home. We were first introduced to PHS in 2010 as the go-to for all of Levi's medical supplies. This is just one of many ways they lighten the load for families like ours. Working with PHS over the years has made having a medical-home so much easier. It has been a privilege to be invited by them to write about our times of family respite at Faith's Lodge. It is my hope that through this post, more families like ours will discover and visit Faith's Lodge.
Here is a copy of my guest posting!
5 Minutes that Changed my Life for the Better
Four years ago I had a rare moment when my medically complex son, Levi, fell asleep after his therapist left our home. I had 5 extra minutes of peace to myself before the next round of medications was due. I decided to check my email quick, read a little more carefully through the backlog of messages, and still have a moment to make a cup of tea. Or so I thought…
An email from PHS caught my eye. It was an invitation to join an event they were hosting. “PHS sponsors organizations?” I thought, “Who?” Scrolling down I found my answer: Faith’s Lodge.
Inside Faith’s Lodge website I found the answer to a question I had been quietly asking myself for a year. “Do families like ours ever get to take a break? The kind that nourishes your soul.”
Care for the Soul
We had just been through Levi’s winter from hell. Four rounds of pneumonia, seven identifiable lung infections, not enough nursing support, as he teetered on the edge of life and death for months. All the while juggling the needs of his newborn brother and trying to figure out how to be a family of four.
Yes, answered Faith’s Lodge. Yes.
I learned Faith’s Lodge mission is to support parents and families facing the death or medically complex condition of a child in a peaceful environment to reflect on the past, renew strength for the present and build hope for the future. Faith’s Lodge: A Place Where Hope Grows.
In its North Woods setting, Faith’s Lodge provides a peaceful escape for families to refresh their minds and spirits while spending time with others who understand what they are experiencing.
Wow! I nearly melted into a puddle of tears right there in my chair. Really?! Someone has already prepared a time and place for families like ours to refresh? I immediately called and asked for an application. It was an absolute step of faith because in that moment we were barely making our mortgage payments. I trusted that if our application was accepted then by some miracle I could find the funds for us to go.
Making Meaningful Connections
In just two weeks our application was accepted. Faith’s Lodge didn’t flinch when I said we would need to take along two PCAs and a night nurse in order for my husband and I to have a little time to ourselves in the midst of our stay. They went out of their way to accommodate our family’s needs. By the time summer rolled around and our departure was weeks away, I found an organization that would cover the cost of our rooms at Faith’s Lodge and squirreled away extra cash for our travel expenses.
Our five night stay at Faith’s Lodge was exactly what they promised. For the first time since my son was born we were able to relax, breathe deeply, and enjoy some serious fun.
We met families like ours for whom machines, beeps, tubes, meds, orthodics, wheels, and caregivers were the norm. It soon became hilarious to watch half the room jump when someone’s feeding pump beeped. We shared meals, our kids played together, and we finally had someone to talk with who understood our realities and spoke the same medical language.
Most of all we had fun together.
We have been blessed to return to Faith’s Lodge for three years. Crescent Cove has generously supported the financial costs of our stays, helped to provide meals, and support the opportunity to make meaningful connections with families like ours. We are so grateful for Crescent Cove’s commitment to providing family respite. The partnership between Crescent Cove, PHS and Faith’s Lodge is dynamic and life changing.
Returning for Renewal
Every year Levi has been able to meaningfully engage in friendship as a result of the daily interactions with kids like him. For his younger brother, Faith’s Lodge has allowed him to experience and appreciate extended periods of time with families with medically complex children – long before he has the words to say so. Each summer we have met new friends with whom we continue to keep in touch. Each time we have been transformed through the renewing of strength and building of hope.
By bringing the realities of Levi’s medical complexities into the sacred and peaceful space of Faith’s Lodge we are able to see him in a new way. We problem solve differently and take home new strategies for how to improve life at home for him. One year we discovered the essence of what is becoming his Make-A-Wish. Another year we found a new way to engage him better in family mealtime. Every year we bring home treasured moments and lasting memories. The kind that fill your soul and brings a smile.
As a fellow parent, I invite to you visit Faith’s Lodge with your family this summer. It will change your life for the better.
PHS loves being able to connect with like-minded organizations that help make life better for the patients we serve. Faith’s Lodge is a long-time partner of ours as they supports parents and families coping with the death or medical complexity of a child in the peaceful environment of their lodge in Danbury, WI. We look forward to another great year together as we all help take care of the whole family.
Dannell Shu blogs at MamaShu.org, contemplating family life within pediatric palliative care. She invites you to follow along. Dannell and her husband lead an ICU at home to care for Levi (6), who was born with severe brain damage. Younger brother (3) says Faith’s Lodge is his favorite place.
