Caring for a seriously ill child is a journey no parent ever expects to take. Yet, within this heartbreaking challenge lies an opportunity to empower our children, ensuring their voices are heard and their needs are met, even during the most difficult times. In this episode of "Comforting Closure - Conversations with a Death Doula," host Traci Arieli talks with Toula Saratsis, a mother, advocate, and end-of-life doula who has lost a child and now dedicates her life to supporting others.
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Listening to Our Children: Why Their Voice MattersÂ
One of the central themes discussed in the episode is the importance of listening to our children, even when they are young or very ill. Toula emphasizes that children, regardless of their age, have a right to be heard in decisions about their care. Whether it's choosing what to eat, deciding who they want to spend time with, or even making more significant choices about their treatment, giving children a voice can empower them and provide a sense of control in an otherwise overwhelming situation.Â
Maintaining Normalcy: Helping Kids Be KidsÂ
Another crucial point Toula shares is the importance of maintaining a sense of normalcy for children during their illness. Despite the medical treatments and hospital stays, children still need to feel like kids. This can mean continuing their favorite hobbies, spending time with friends, or simply playing games. These activities can provide much-needed emotional relief and remind children that they are still more than just their illness.Â
Advocacy and Collaboration: Working with Healthcare ProvidersÂ
Toula also discusses the role of parents as advocates for their children. Being a strong advocate means ensuring that your child's needs are met, asking tough questions, and making informed decisions about their care. Collaboration with healthcare providers is essential in this process. By working closely with doctors, nurses, and other professionals, parents can create a care plan that truly reflects the best interests of their child.Â
Support for Parents: You Are Not AloneÂ
Caring for a seriously ill child is incredibly challenging, not just for the child but for the entire family. Toula highlights the importance of seeking support during this time, whether through counseling, support groups, or simply leaning on friends and family. After the loss of a child, grief can be overwhelming, but resources and communities are available to help parents navigate their grief and begin to heal.Â
Empowering our children in pediatric palliative care is about more than just making medical decisions—it's about honoring their voices, preserving their childhood, and advocating for their needs. As parents and caregivers, it's crucial to remember that you are not alone on this journey. Whether you're currently navigating this path or supporting someone who is, take a moment to explore the resources available, connect with others who understand, and continue to be an advocate for your child's voice and well-being.Â
Links/ResourcesÂ
Guest: Toula Saratsis can be found on Facebook and Instagram. You can also email her at toulasaratsis@gmail.com.Â
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