That’s right. My son Thomas is a child who is living with microcephaly. It’s a diagnosis that your average person had never heard of until about a month ago. When news about the outbreak of the Zika virus and it’s likely relationship with a rash of new cases of microcephaly hit I was shocked. Doctors don’t even see this condition very often and now it’s all over the news. It’s heartbreaking to watch the news every night and see pictures of babies with microcephaly and hear everyone saying BIRTH DEFECT! Ugh. It’s so hard to hear.
There is reason to be alarmed though. Those babies and their families will be facing tremendous odds because of the microcephaly and because of the lack of Early Intervention available in those areas. I was so lucky to have access to great medical care for my son and a team of experienced professionals who have helped Tommy to grow and thrive.
It hasn’t been easy. He has hypertone, feeding issues, and developmental delays. He had a feeding tube for five of his six years and went through years of feeding therapy until he could eat enough to sustain himself. He is blind, but not because of the microcephaly. So yes, Tommy has had many challenges to overcome in his life. Yet somehow, he really has thrived. He walks with a long white cane and does an excellent job with it. He started cane training at age two and he’s been unstoppable since. You should hear his Orientation and Mobility teacher rave about him and his technique!
Tom was slow to develop language but he’s got it now. He doesn’t always talk in full sentences but I think that’s because he gets his point across with phrases. He’s not one to elaborate. He’s far too busy for that! We started speech therapy when he about 18 months old and he continues to have speech therapy at school.
He’s beginning to learn Braille; in fact, our whole family is! We met with his classroom teacher (a Teacher of the Visually Impaired or TVI) who gave us ideas and a plan for working on Braille at home. I love to read so I’m quite motivated to make Tommy a reader. I’ve been reading Tommy two or three books a night before bed for years and he loves it. It’s a special thing we get to share together and I think it will have the sneaky benefit of making him a reader. He already loves stories and has begun making up stories for me lately. He recently told me a story about our cat going to Home Depot and then having burgers at Five Guys. I had no idea our cat had such adventures!
I get it. Microcephaly is a scary diagnosis. Some children are severely affected and require a lot of care. That’s all true, but like many conditions there is a range of severity. Tom is affected but he is also doing quite well. He’s his own man and he’s developing at his own pace. I can’t help but admire his sense of self and incredible decency. I know that he’s a special little boy and I hope to shape him into a good man. That’s all any parent can really do.
I hope people can see past the headlines and remember that these are children. Children that will grow up to be adults in our society. We need to learn to embrace the reality of the human condition in all its forms because everyone has something to offer this world. I really hope that more research is done on microcephaly and that we find new ways to help people with this condition. Let’s start by remembering to treat all people with respect and find ways to see the value in everyone.