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The Lessons I Want My Children to Learn As a Parent With Chronic Illness

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As a parent, I feel as though my rare disease, amyloidosis, has taken away from my children’s experiences. It even took me away for almost a year of their lives. As I battled my illness, I was not able to be the primary caregiver for them. There were many things I missed out on. Time was taken from us. It has caused them stress. It has made them worry. It has made them sad.

The negative impacts of having a parent with rare and chronic conditions are obvious. But what about the ways it can positively affect them? I set an intention a long time ago to find the good during my difficult times — to focus on the joys and light, rather than the sadness and darkness.

They must be able to learn lessons from the rough patches, right? Isn’t that how we build character?

Which brings me to my latest intention: to help my kids learn from all we are going through. These are the lessons I will try my best to teach them:

  1. Life is not always fair. It’s not a fun lesson, but a necessary one that will help them when faced with disappointment. Sometimes you’re not going to like what happens to you. Accept your circumstances. Change what you can, and most importantly, accept what you cannot.
  2. Don’t let the world harden you. You can’t always control your circumstances, but you can control your reaction. When you face adversity, try to find a way to learn from it. Try to find a way to become a better person because of it.
  3. Don’t compare yourself to others. The only life you can live is your own, so don’t waste time with comparisons and being envious that someone else has it easier. Find the good in your life and do what you can to maximize it.
  4. Be resilient. When you fall, try your best to get back up. If life throws you a curve ball or “plan A” doesn’t work out, regroup, get back up, and start again with a new plan.
  5. Capture joy. Seek it out. Moments are fleeting and can change in an instant. Create your own happiness and be grateful for every minute that’s been given to you.
  6. Leave your mark on the world. Every person has unique talents and skills they can share. Find your way to make the world around you just a little bit better. When my future was uncertain, one question that came to me was “Have I made an impact? Have I made difference — even a small one?”
  7.  Create as many moments as you can. Don’t wait for them. The timing will never be perfect, so savor as much as possible.
  8. Be kind. You never know what battle someone else is facing. Struggles are not always obvious. I hope with all my heart that you’ve learned this from watching me.
  9. Hang on to hope, even when it seems pointless. Life is ever changing. Your current situation may not be your final destination.
  10. Give love, and be open to receiving it. Surround yourself with as many amazing, generous and kind people as you can. Create a supportive community for yourself and fill it with love.

As we go through life together, I will do my best to lead by example, remembering to keep learning so I may pass life’s lessons on to you.

Originally published: February 25, 2019
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