What is a respite home?
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Rest & Rejuvenation for Families
Provides short-term overnight care in a safe, home-like setting.
Allows parents to rest, recharge, and return stronger to continue caring for their child.
Offers a trusted alternative to emergency rooms, which are costly and not designed for respite.
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Expert Care
Staffed by trained professionals specializing in complex medical needs.
More than just medical support—families receive spiritual and emotional care.
Creates a space where children and families feel safe, valued, and understood.
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Warm, home like setting
Warm and inviting surroundings for gentle, dignified care.
Activities and surroundings that include crafts, sensory, and therapy rooms, along with outdoor gardens, peaceful water features and adaptive playgrounds.
Community space to gather and share support.
For families raising a child with a life-limiting condition, the daily reality can be exhausting — physically, emotionally, and spiritually.
Most parents provide complex care 24/7 with little support. They are nurses, therapists, advocates, and constant protectors — often without sleep, rest, or time to care for themselves, their marriage, or their other children. Overnight respite is not a luxury — it is a necessity (CRHA, 2025).
Our Vision |
At Beside Still Waters, our hope is to invite children with life-limiting conditions and their families to feel at home. A clinical team, along with dedicated volunteers, will help foster a joyful environment geared towards children, in addition to offering a range of therapies to foster connectedness, growth, and fun.
We will be a community-based respite home, that will host up to 8 children and families at a time through suite-style rooms. We also provide end of life support as it is needed.
We envision a world where every child’s journey is honored, and every family experiences a place of solace and healing.
SERVICES |
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We hope to provide bereavement services, in addition to child life therapy, memory-making activities, and the support of a chaplain. Caretaking for a medically complex child with a shortened life expectancy often involves prolonged grieving, and we understand the unique challenges that families face during this time. Our aim is to support families physically, mentally, and spiritually, addressing needs holistically. Supporting families is key in navigating this difficult journey, as we believe no one should have to walk it alone. Through our services, we want to be a pillar of strength, offering comfort, remembrance, and connection for families during and after their caregiving experience.
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Child Life Services are also integral to our program, providing support and education to children and families navigating health challenges. Together, these therapies create a nurturing environment that enhances the overall resilience and joy of our children.
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Music and Art Therapy allows children can express themselves and find comfort through melodies, rhythms, color and movement.
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Utilizing the calming presence of animals to help reduce stress and promote emotional connection.
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Optimizing movement and hands on / active vs passive range of motion are important elements to all individual care plans and quality of life metrics. A swimming pool for active engagement is possible as well.
Frequently Asked Questions |
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Palliative care begins at diagnosis and continues alongside curative treatments - potentially - for years. Hospice is specialized, compassionate care for children with a life expectancy of six months or less.
Yes - we are happy to provide both.
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Here is a brief list of medical diagnoses of infants and children for whom we would typically care for:
Genetic/Chromosomal: Trisomy 13, Trisomy 18, Wolf Hirshorne Syndrome, Severe Osteogenesis Imperfecta.
Neurological: Lissencephaly, Holoprosencephaly, Agyria, Joubert’s Syndrome, severe neurologic impairment from Hypoxic Ischemic Encephalopathy.
Congenital/Structural: Anencephaly, Potter’s Syndrome (absent kidneys/bladder), Hydrops Fetalis, Camptomelic Dysplasia.
Other/Complex: Severe Ehlers-Danlos Syndrome, Relapsing Polychondritis with severe Tracheal Stenosis, Congenital Cystic Adenomatous Malformation of the Lung, severe cardiac defects, and neonatal infections
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We offer palliative, respite and end-of-life care in a nurturing, home-like setting. We are hopeful to provide:
Pain and symptom management
Play, massage, music and pet therapy
Respite stays for children and families
On-site family accommodations
Sacred, supportive space for end-of-life care
All spaces will be designed with the specific needs of these children in mind — spaces that are accessible and welcoming. We work closely with each child’s primary medical team while providing a foundation of care and comfort for the whole family.
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Ronald McDonald House provides lodging near hospitals so families can stay close while their child is receiving treatment. Children do not receive any medical care at Ronald McDonald House—it is strictly a place for families to stay.
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A key difference between adults and children with life-limiting conditions is that a child’s life path is often more difficult to project, are more resilient and can live longer than expected, and therefore need more support for longer periods of time. Caring for children requires different and usually more resourceintensive services which is why hospice programs that traditionally provide adult palliative care are often unprepared and ill-equipped to appropriately handle care for a population with different needs than their usual patients.
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All services provided by Beside Still Waters are provided to families at no out-of-pocket cost to them. Our primary support is sought through the generosity of our community who make our care possible. We are continuing to work with state legislature for Medicaid reimbursements from families’ Medicaid waiver funds and work on new legislation regarding end-of-life care coverage.
