To the People Just Learning About Microcephaly Because of the Zika Virus

In recent days, news about the Zika virus has flooded the airwaves. If you haven’t heard of it, it is a mosquito-borne illness, and there’s a possible association between the Zika virus and infants with microcephaly. (According to the CDC, “because of the possible association between Zika infection and microcephaly, pregnant women should take steps to prevent mosquito bites.”)

The news has put the word microcephaly on the map. Microcephaly is a condition in which slow growth of the brain causes slow growth of the skull. This can result in developmental disabilities in the child. There is a wide range of abilities within a microcephaly diagnosis. Some people are minimally affected and some are more severely affected.

Two of my children, MaryEllen and Kevin, have microcephaly. Theirs did not become apparent until they were about 1 year old. Their brains grew slowly after birth. The result was a severe developmental disability. They use their wheelchairs for mobility and have low vision. They cannot speak and have a lot of medical equipment. That’s what people on the outside see.

What they don’t see is their everyday joy. Yes, there are moments that are unpleasant, like early morning wake-ups for MaryEllen or when the Harry Potter audiobook is done for Kevin, but there are also smiles and happiness. Kevin’s laughter is contagious! His shoulders giggle with him. And MaryEllen’s smiles are something to be experienced. You can feel her joy.

So, this is for you, people just learning about microcephaly because of the Zika virus:

Microcephaly is not a four-letter word. It’s just a word. It shouldn’t provoke anger or negativity. It is a neutral word.

Behind every microcephaly news article is a person, a wonderful person! Think before you comment. If you don’t have something nice to say, please, just don’t say it. We moms of children with microcephaly don’t want to hear that you would never want a baby with disabilities. We don’t want to hear that you would never want a “life like that.” We care for and love our children just like you do. Our children do not have horrible lives.

Please don’t feel sorry for us. We’re not sad! We are happy. Loving our children is easy. Living in a world where people frown upon their existence is difficult. Don’t be a part of that.

Follow this journey on The Heartful Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.