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Raising My Children While Living With an Incurable Disease

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To me a good life is a balanced life. One where there is good and bad, laughter and tears, light to work in and darkness to rest. And then there is noise and silence; what I want to talk about today is the chatter that surrounds us all.

There is a constant buzz of opinions in the air; everybody has thoughts about everything and nothing, from politics and religion to things that don’t really affect us. Some choose to vocalize most of their views; others like myself try to determine if our comments are important, helpful and most importantly… wanted. I try to exercise respect as much as I can, however I do not always receive the same courtesy, especially when it comes to my parenting style.

I raise my children according to my own values and I value life. In my experience, the moment you get diagnosed with an incurable disease, your outlook on mortality changes and your perception of reality changes with it. In my case, my multiple sclerosis has taught me to be more selective about what triggers my emotions. I have learned to pick my battles and enjoy my days as if they were my last on earth.

I choose what makes me sad, mad or glad and I can better control how I react towards everything, including my little ones. I try to apply these lessons in my family life most of all, because that is where I spend most of my time. I continuously question what is the last thing my children are going to remember of me if my health deteriorates, and this makes an enormous difference.

I search for that balance when it comes to child rearing. I have to prepare my boy and girl for the future so they grow up to be responsible adults who are honest, kind and happy. I discipline them according to the situation and it is usually removing privileges of TV and video games, very simple and straightforward. I find it works, and a calm reminder of these consequences usually does the trick.

For some reason, people around me persistently judge my parenting skills, and their verdicts are all over the place. Some think I am too strict, others believe I am too soft on my kids, and a few believe I got it just right. My children are healthy, loving, funny and spontaneous; that is all I really ask of them.

I understand my spectators often don’t consider my situation; they don’t look at my moments as fleeting as I do; as a result, I have become an expert on discarding unsolicited advice and being discreet. I do not feel the need to repeat a long complicated explanation about life and death or the impressions we leave to our loved ones. Maybe as they grade my parental work I should also give them a few lessons on the wealth a second of life contains: of using your five senses to absorb existence to the fullest and cherishing to the maximum the gift that is the present.

I am deeply grateful to all of the people who care about my family, and me, but you don’t have to worry about my children. I actually think a lot of people could learn from my example: I do the best I can, and I raise my children on my own loving terms, on my amazing race against time. And take my word for it… silence really is golden.

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Photo by contributor.

Originally published: January 10, 2018
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