"Parents can support children with chronic illness by letting them know what's going and what lies ahead in terms of treatment, providing many opportunities for choice as possible, and trying to model calmness in their reactions."
Although this article specifically talks about another chronic illness than VHL, many of the ideas can apply to parents of children of VHL. What do you think? What do you want to share with other parents?
From” “Coping with chronic illness like congenital heart defects” by SickKids staff (Hospital for Sick Children, Toronto)
... What do parents worry about? … Some specific issues include:
- Having to hand over care of their child to other people and having to put their trust in the health care team
- Stress over making medical decisions for their child and not understanding what's going on
- The struggle with their own emotions — anger, guilt — and physical and mental exhaustion
- Figuring out how to support their child
- Stress on the marriage
- Spending so much time at the hospital that working becomes impossible and family income is significantly reduced
- Worrying that everyone is evaluating how you deal with your child
- Fear of surgery and its outcome
- Fear of an emergency situation and knowing when to get help
- Not knowing whether a medical or behavioural problem that arises after treatment is related to a heart condition
- Stress of not knowing how their child is doing from one clinic appointment to the next
- Not having access to a doctor who is knowledgeable about their child's condition
- Knowing how to parent a chronically ill child
- Not knowing how the condition will evolve and if or when it might worsen
- What to tell friends and family
- Monitoring their child's symptoms and knowing a condition may be worsening
- Learning how to meet a child's needs at home after treatment
- Meeting the needs of the entire family while caring for a sick child
- Trying to define a "new normal"