Microcephaly Is Not a Four-Letter Word

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 that can cause brain malformations in a baby within the first few months of pregnancy, if the mother was infected during that time.

The news has put the word microcephaly on the map. Microcephaly is a neurodevelopmental disorder 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 children are minimally affected and some are more severely affected. An MRI cannot tell you how mild or severe the outcome will be with 100% certainty.

MaryEllen and Kevin have microcephaly. Theirs did not become apparent until they were about a year old. Their brains grew slowly after birth. The result was a severe developmental disability. They use their  wheelchairs for mobility and do not have useful vision. They cannot speak and have tons of medical equipment.

That’s what people on the outside see.

What they don’t see is their every day 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 it is always short-lived. There is no whining or complaining. There are no tantrums. There are just 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.

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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! And we are not delusional when we say 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.

MaryEllen and Kevin know life only from their perspectives. Guess what? They are happy.

Happier than you, even.

Think about that.

 

9 thoughts on “Microcephaly Is Not a Four-Letter Word

  1. “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! And we are not delusional when we say 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.”

    Yes! Thank you for writing this!

  2. Wonderful article Lori! Glad I finally slowed down and took the time to read it and I will catch up on the others. You are a champion for us all and plan to follow in your footsteps. Our children are very happy, beautiful, pure spirits. My Aiden is truly an angel, and very intelligent, despite his disabilities.

  3. My beautiful granddaughter has microcephaly along with several other disabilities. Everyday with her is a miracle from God. In spite of all the challenges, the happiness I get from her smiles makes all of the sleepless nights, trips to all of her specialists, stays in the hospital, worth it. We all love our very special babies and as you said, ” If you can’t say anything nice, just shut up.”

  4. Thank you for a wonderful read. My beautiful son, Ian, has gone to be with the angels now, and I miss his laughter and companionship every single day. While here, he touched so many, many lives and made me a much stronger person. I would not be who I am today of I had never had him in my life. No matter what defects a person has, that person is here for a reason. To be too blind and inconsiderate enough not to see this, is a loss. I learned what unconditional love is, I learned compassion, I became stronger all because of Ian. Love and hugs to you and your gorgeous dolls.

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