Finding out your child has a neuromuscular disorder is an incredibly difficult time for the whole family. It’s perfectly normal to feel a range of emotions, from anger to guilt, depression to denial, as you come to terms with what the future holds. Many parents will go through a period of grief, where they mourn the life they had or the life they had envisioned for their child.
According to Muscular Dystrophy Canada, parents may feel isolated when they find out their child has a neuromuscular disease. Feelings of helplessness and despair are common as they initially learn about the disease, but these feelings often turn to hope and determination as they discover ways to be active in their child’s treatment.
As the child gets older, it’s common for parents to hide many of their feelings to appear strong for their child and the rest of the family, but it’s important parents deal with anxiety and depression before those emotions negatively impact their health.
Finding support can benefit parents of children with neuromuscular disorders. Local support groups or online forums can offer a wealth of emotional and practical support. Reach out to others who are in a similar position — hearing their experiences can be incredibly helpful.
Some parents may find counseling useful, either as a family or on their own. Talking with professionals about the stress and anxiety associated with looking after a sick child can help parents to refocus and embrace their new lives.
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