I love seeing the progress Evan is making, and also reading DeDe’s perceptions of parenting a child with a disability. Evan has Harlequin Ichthyosis and he’s almost five years old. You can read DeDe’s blog and follow their adventures on Facebook.
Being the mother of a child with special needs has been rewarding as well as exhausting. I have become a better person because of Evan, who has Harlequin Ichthyosis, and I am very proud of all the accomplishments he has made. Does he do the same things as other children his age? No. But that’s ok. That’s our life. We are happy and that is what is most important. Some people do not like the term “special needs”. This term does not bother me at all and really seems accurate, as my Evan really is special.
Special is a term used to describe something better, greater, or otherwise different from what is usual. I cannot think of a better description when I think about Evan. He is special in so many ways. And though he may require special care and have special needs, there is no reason to think of it negatively or as anything other than wonderful.
I’ll be honest, I am sick of doctors. I am sick of appointments and I am sick of worrying. But it comes with the territory so I just pick up and move on. I tend to not take things for granted, like having healthy skin (myself) or how I can easily close my eyes when I sleep. Most people wouldn’t think twice about the fact that your eyes close when you sleep. But in the Ichthyosis world, it is a moment to celebrate and be grateful for when it occurs. My husband made a point to show me how grateful he was for the care I am giving Evan. After checking on Evan while he slept, he came downstairs and wrapped his arms around me, since he noticed Evan’s eyes were closed tight. Sometimes the simplest gestures have the most powerful impact.
I am very proud of my special needs child. And when it comes down to it, doesn’t everyone have special needs? Doesn’t everyone have needs that are unique to themselves? Things that make life happier or easier? In reality we are all special and we all require “special needs”. Others just require a little more.
Different is special.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.