Living with a chronic illness is pretty tough, but trying to be the best parent at the same time is even more difficult. There is so much more than just fatigue and pain that chronic illness warriors like myself deal with and that affect our parenting. There are other debilitating symptoms that affect our emotional state as well. For me, Scleroderma, a chronic connective tissue disease that hardens and tightens the skin and connective tissues, has physically changed my facial appearance. It was really hard to accept these changes and simultaneously be the positive mom my son deserved. It took years to accept my new “me”. I have telangiectasia (dilated small blood vessels on the skin) on my tight face, my lips are thinner and my fingers are pulled back in a fist position. I regained some confidence and self-esteem with the help of my family. The best support has been my son who was 5 years old at that time of my mental chaos and loved me unconditionally just the way I was.
As I was raising my son, it was important to model empathy, kindness, and respect for others. I wanted him to grow up to value people for who they were and not by how they looked. Lamentably, we are surrounded by people who make life harder by staring, making unnecessary comments and disrespect. My son was too young to understand any of the chaos I had been through, but I definitely knew I didn’t want him to become a heartless grown-up who wouldn’t care for other people’s life challenges. I am very fortunate that it didn’t take me too long to notice that he is naturally kind and respectful. I truly believe that his experience living with me, has made it seamless for him to understand that everyone has their own challenges. He has learned that some challenges are obviously noticeable and others might be invisible.
That being said, I learned the hard way that not all families instill characteristics such as empathy, kindness and respect in their children. I am sure it isn’t intentional not to do so; there are so many other things we need to keep up with as parents. It wasn’t until my son started school, that I understood how rough it could be on kids who have a family member who has a disability or doesn’t conform to the “normal” looks. Sometimes, my son would come back home from school confused and uncomfortable. He questioned why some of his classmates stared at me and why they looked at my hands so closely when I did drop off or picked up from school. It was in school where my differences were pointed out to him. Since then, he became more aware of how I was evaluated by others. It was heartbreaking to see him bothered by something I had no control over.
Our confidence and positive attitude has helped both of us live happy and carefree. It is a fact that children are curious by nature and it is our job to guide them to understand that being different doesn’t mean it is a bad thing. We need to educate them, encourage kindness and point out different abilities in the people around us. The best way to teach empathy is by inspiring our kids to be kind. I live by the quote from the picture book When Charley Met Emma by Amy Webb that says, “different isn’t weird, sad, bad or strange. Different is different. And different is OK!”