We’re so glad you’re connecting here with others, @Adri. Do you have support from your community, beyond your medical providers, who are assisting you? If you're in BC, Canada, you might want to call Connect for Health. They can help you with caregiving and other things that aren't necessarily within the realm of the health care system. https://www.painbc.ca/chronic-pain/connect-for-health

Are there other parents out there in a similar situation who can connect with Adri and offer some support?