September 30th is Microcephaly Awareness Day! It’s a day to say, “Hey, you know someone living with this condition.” Microcephaly is rare and literally means small head. Tommy has a smaller than average head size. That’s all it is. Like most conditions is can be mild to severe and the impairments and complications associated with this also range from mild to severe.
Microcephaly is an intimidating diagnosis to get and one we got the day Tommy was born. But it’s merely one part of Tommy, a characteristic not a definition. Today Tommy is walking, talking and learning. He is happy and healthy. That’s a lot to have in this world and I am grateful.
If you are a new parent dealing with this diagnosis stop Googling right now! You will only scare yourself. Get on Facebook and join one of the many microcephaly groups for parents where you can get the information and support you need.
You may think you have never seen anyone with this condition but you probably have. Some people have mild cases of microcephaly and don’t even know it. Unfortunately, there is one other way you may know of this condition. It made me sad and more than a little sick to see how microcephaly was portrayed in the American Horror Story series. I wish people could understand that there are real children and adults living with this condition. It is not a joke and it is not an exotic curiosity.
Tom has taught me a lot about kindness and vulnerability. Being the mother of a child with special needs can make you incredibly vulnerable because you have to trust the world with your child, and that child may not have the same defenses or capacities as other children. It is not an easy thing to do but we all have to live in this world.
That’s why I’m sharing this information about microcephaly. I have always believed that putting human faces and stories to circumstances can make them less intimidating or “other.”
Hello to all the little micro-loves out there! I hope you have a great day.