Ichthyosis Awareness Month - an update on Evan. "Different is special."

Since we last caught up with Evan and DeDe, Evan's become a big brother! He is SO doting on baby Vince - the photos of them make my heart melt. Beautiful. 

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. 

Say hello to some of my best friends, DeDe, Evan and Vince!

 

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.

A parent's job is to care for, protect, love and provide a happy life for their child. Those are, at least, my goals as a parent. Ultimately making sure Evan is safe and as healthy as he can be with all considering. Is it an easy job? No. Is it a rewarding job? Absolutely. I have come to appreciate the finer things in life. Things like having conversations with Evan, seeing him get excited over a toy or game, watching him play pretend or seeing how caring he is with his baby brother makes me forget about the overwhelming pressure of his care.

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.

My life has been so wonderful. And so has Evan's. There really isn't anything I would change about it. If anything, I would like to take the "life threatening" aspect out of his disorder. We can handle the skin care and management. We can handle the baths and endless Aquaphor applications. We can handle the the social interactions and comments from strangers. But the worry for his life because of weight gains, dangerous temperatures or possible skin infections is not something I like getting use to. 

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.

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