The doctors tell me my son has mitochondrial disease. They say it’s a progressive, incurable disease, but they can’t tell me what will happen next or when it will happen or even if he’s going to live to be a grown-up. How do I cope?
The diagnosis of mitochondrial disease in your child or children can make you feel like your world has been turned upside down. The foundation on which you stand may seem torn from under you. Although no parent has any guarantee their child will grow up and live a “normal” life, most parents move through life with that assumption. The diagnosis of mitochondrial disease challenges the most basic assumptions of parenthood.
When your child is first diagnosed, you are likely to feel mixed emotions. It is normal to feel grief, sadness, anger, anxiety, and even relief at having a name to put to your child s symptoms. These emotions don’t typically end a few weeks or months after the diagnosis.
There are periods of relative stability in which you will adjust to your child’s new normal (i.e. feeding tube, wheelchair). Yet, when your child develops a new symptom or a visit to a doctor brings more disturbing information, you are likely to experience another grief reaction. It will take time to physically and emotionally adjust to the diagnosis of mitochondrial disease. Be gentle with yourself.
- Recognize how you feel (this can sometimes be difficult!)
- Understand how you cope; remember you and your spouse may cope very differently.
- Find a few people with whom you can speak about how you feel. Those who can listen may not be the ones you expect. You may have to search for the people that can truly listen to you talk about the painful and joyful feelings that come with parenting a child with mito. Talk to them, write to them getting the feelings out through words can be immensely helpful! Research consistently demonstrates that parents of children with chronic illness cope better when they have considerable social and emotional support.
- Seek group or individual therapy.
- Take care of your own health with proper nutrition, exercise, and fun (yes, fun!)
- Be an active member of your child’s medical team. Ask questions, gather information. Make informed decisions. This can reduce your feelings of powerlessness and lack of control.
- Get involved with non-profit organizations directly benefiting those with mitochondrial disease. This is also helpful in reducing feelings of helplessness.
- Lastly, realistic hope is important. Although the unknown of mitochondrial disease can create anxiety in parents, it also contains hope. The course of mitochondrial disease is almost always impossible to predict and, in that, lies enormous hope for the future of all our children living with mitochondrial disease. Hold tight to that hope during times of worry and fear.
Children are incredibly resilient and positive. Let yourself learn from your child. Immerse yourself in the moments that bring joy to you and your child.
Content provided by Ann Reckling