For so many parents and caregivers caring for children living with illness and medical complexity, the stress and burden of caregiving can be overwhelming. Practicing self-compassion can help us shift out of survival mode, allowing us to better deal with challenges and grow our emotional resilience. Within this guide, you will find some great tips on the benefits of self-compassion and ways to practice self-compassion which can enhance your well-being and capacity to be the caregiver.

Aunts and uncles of a little girl with Tay-Sachs, Havi, describes the origins of their family’s “Shabbirthday” ritual which they celebrated every Friday of her life. Celebrating Shabbat and her birth, every Friday. It was a time to celebrate Havi intentionally and to let friends and family in. They had 57 Shabbirthdays during her lifetime and continued after her death to honor her life. The ritual helps keep her very present.

Aunts and Uncles of a little girl with infantile Tay-Sachs — who moved to be near the family — share some ways they helped the parents: providing respite for sleep, celebrating events and hosting micro-beautiful moments and meals, finding equipment to keep her comfortable. Equipment tips to help with oral feeding: Dr. Brown’s Baby’s First Straw Cup and Sassy Baby Food Nurser and Ark’s Z-Vibe Travel Kit with Spoons

The Aunts and Uncles of a little girl with infantile Tay-Sachs — who moved to be near and support the family — talk about wanting to protect the parents from their own sadness; and how the mom encouraged them to share and show their feelings – to grieve together, collectively. The balance between sharing and protecting. Communication is key.

The aunts and uncles of a little girl, Havi, who moved to be close to the family and lived together following her diagnosis with Tay-Sachs, talk about how they made it work. Boundaries, finding FULLness, tending to their respective marriages.

The aunt of a little girl, Havi, who died from Tay-Sachs, talks about how loving on Havi and her parents was a gift she gave herself; and on how she is finding ways to keep loving and giving following Havi’s death.