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What I Hope to Teach My Child as a Parent With Dysautonomia

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Every day people preach about the obstacles you will face as a parent. Every day stories are swapped comparing parenting battles won and lost. But often what is overlooked and misunderstood is parenting with a chronic illness. When your day consists of barely being able to get out of bed from overwhelming fatigue, forcing yourself to take medications that do nothing and the isolation that comes along with your illness, how do you care for someone else – let alone yourself? How do you keep up with a 4-year-old energizer bunny who seems to have discovered a hidden Red Bull stash you had no idea even existed?

Parenting with a chronic illness is complex and filled with trial and a lot of errors. Parenting with a chronic illness oftentimes is a team effort and in order to survive, you throw it all in the air and cross your fingers that your team has your back. Every day I wake up hoping for a good day and lie in bed Googling magic cures when it doesn’t happen, all while a curious 4-year-old with a million questions observes eagerly and persistently.

“Mommy, are you having a good day?” “Mommy, when your doctor fixes you can we drive and go eat pizza because you will be better?” All the while, I know this is possibly my new forever – living with a chronic illness – yet I don’t have the heart to tell her, so instead I put on a smile and tell her how much I look forward to all of her ideas and adventures.

Through my illness, my little princess has learned empathy and true care for the well-being of people that many adults will never have or be able to understand. As a parent with a chronic illness, I find myself feeling so discouraged in what I am not doing that other parents are that it is hard at times to remember all the good that comes from parenting with a chronic illness. Things such as the maturity kids with ill parents develop, the empathy and compassion they exhibit, the strength we teach them each and every day through our battle and the ambition, willingness and responsibility they show in wanting to help take care of things to make our life easier and better.

It is so easy when we are ill to get down on ourselves and feel like we are less-than-par parents, when in a reality we are doing the best we can with the hand we have been dealt. We embrace the good days and live them to the fullest while surviving the bad ones with a little help from the amazing kids being raised dealing with chronic illness! And they truly are nothing less than amazing!

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Thinkstock photo via Choreograph.

Originally published: May 24, 2017
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