Everyday Miracles

I connect with the special needs community on social media daily. In real life I know few people who have children with special needs; however, on the internet I know tons of people who have children with special needs. And sometimes I need to see pictures of other cute kids like my Tommy who have eyes that look different or who have a heads that is a little smaller than usual.

Chilling as he gets a tube feed.

I love to hear what these kids are up to, commiserate with the parents who share stories, and give virtual high fives. Other parents I know might not get excited when I say that my almost four-year-old son spoke a full sentence or took his shoes off by himself, but in my special needs online communities I get the support and understanding I need.

The special needs community is like any other community. There are rules for conduct and some things are frowned upon. I don't need people coming onto a sight for visually impaired and blind children and bragging about how their child can now see just fine now, or how they have one good eye and are so glad their child is not held back in life. But unfortunately, that does happen. I know people want to give hope to new parents just beginning this journey but often what they give is false hope. Sometimes we don't get a fairytale ending. Some of us will walk a more difficult road and we have to learn to be okay with that.

I also hate it when people suggest we pray for a miracle. Let's get this out right now. Tom is a miracle. Today, just as he is, Tommy is a miracle.  Some children with the same conditions as Tom are profoundly affected. Quite often, children with microcephaly and his kind of brain differences cannot walk, talk or sit up. However, you will not find me on a microcephaly support group site saying that Tommy is a miracle and listing all the things he can do because I find that both cruel and unhelpful to others.

Treating the cat to a musical performance. She is spellbound...

I think that sighted people are so terrified by blindness that they can't imagine Tommy could possible be happy as a blind child. Tom was born blind and this the world as he knows it. He is quite happy. Some would say that he is extraordinarily happy and pleasant for a three-year-old.  People who meet Tommy often comment on how happy he is. I wonder if they would say that if he was not blind?

Will science advance to the point of establishing vision for Tommy someday? I don't know. Dr. Capone, Tommy's retinal surgeon in Detroit, was confident that such medical advancements would be made and available in Tommy's lifetime. But if that never happens it is not a tragedy and Tommy's life is not a tragedy now. His life as a blind child is different from that of a sighted child but it is no less valuable.

Einstein said, "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." I think there are lots of miracles out there for those willing to take notice of them.