Mother and child polar bear navigating icebergs shaped like conversation bubbles

Tips to Better Navigate Raising Children in the Midst of Illness

Establishing a conversation regarding Parkinson's disease (PD) is an important part of parenting in the midst of illness. My conversations with my daughter have been evolving over time. As she has matured and understood things better, we have had various discussions ranging from ‘Will I have PD too?’ to ‘Why can’t they find a cure already?’

Learning to be empowered

We must lead by example because “we can’t live in one truth and parent in another”, I heard a Bible Study leader at Women’s conference once say. It is very true, even when children are little, even before their brains can process all the information around them, if they sense their parents are anxious, angry, or afraid they too will incorporate these feelings into their own lives.

Subsequently, if children are raised in a home full of turmoil and stress they can have behavioral issues as teens and adults including long-term depression and academic problems. However, if we have a positive attitude and outlook on life that is not centered on our disease or us as victims, our children can, in fact, thrive emotionally and academically learning to be more compassionate and resilient.

Setting appropriate guidelines

As parents with PD, we should first learn to establish a new set of rules and realistic guidelines. We must also keep in mind that these expectations need to be flexible and allowed to change over time as children grow and the disease progresses. Plus, the expectations should always take into account not only everyone in the immediate family, but also each individual's unique gifts and responsibilities. For instance, a child’s responsibility should center on their own social, physical, emotional, and academic development.

Children, although encouraged to help out, should not become caregivers! Remind them that the disease is not a punishment nor anyone’s fault. It's a normal occurrence - like having a rainy day - because in life at some point all of us will have to live with or care for someone who is chronically ill. However, this does not preclude us from living our lives to the fullest or give up on our dreams.

Note that not all bad behavior or problems in our kids are related to us having an illness. Sometimes, children/adolescents just like to push the boundaries of our parenting skills or have issues related to growing up. Independent of your style of parenting, remember to be consistent - children and teenagers need rules to feel secure.

When my daughter started suffering separation anxiety due to my frequent hospitalizations, I made an extra effort to show up and be near her everywhere she went until she overcame her issues and no longer needed to see me to know I would be there for her.

Focus on the positive aspects of disease

For instance, like me, now you may be able to stay home and be more involved in their daily lives. So you are not so good at doing some things that you were good at like math? Which has happened to me. Some days I can’t remember what one plus one is much less do complex algebra to help with my daughter’s homework. Instead, I help her with the things I am still good at like English and writing.

Be present in the moment!

In the end, there is no one way or one specific time to discuss salient issues with your children. It can be while driving or waiting in line to drop off or even while watching a T.V. show together. Don’t limit the conversation or halt their questions. Be as open and as specific as their age and maturity level allows. Above all remind them that your love for them is unconditional independent of disease state, and your willingness to be involved and present in their lives will be a priority even in the midst of dealing with disease. If you need to rest and take a larger dose of medication in order to make their performances and attend their school activities then so be it. Your children will not only gain self-confidence from your unconditional love but learn that although challenges in life exist how we handle them is what defines us.

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