I am having a hard time putting words to the thoughts I am having today. There are so many parts of the story I am about to tell that need addressing, and so much at stake in the message.
I was on the phone the other day with a friend of mine I have had all of my life. He and his wife have a beautiful baby boy, let’s call him Brian. Brian was born with disabilities, specifically, he has WAGR syndrome. It is something that very few people ever need to find out more about, as so few people are born with the specific genetic traits. WAGR contributes such a small part to this story that I am not going to spend my time focusing on that aspect.
Brian is a happy, quickly developing little man, who is making progress every day. He is full of smiles, laughter, and love for those around him, and a true pleasure to be with. All of the things we look for in children of this age, he is doing well at. Eating on his own, learning to get more of his lunch in his mouth than on the walls or floor, getting around from place to place of his own free will, interacting with people, expressing himself, exploring and becoming more independent and just generally being a two year old kid.
There are a couple things that he has been working on developing, that with physical and occupational therapy as well as some support for his visual impairment, he is making great gains, and using his skills across his environments consistently well. He seems to like putting things in his mouth quite a bit, but at this age, everybody’s doing it!! My guess is that it is one more way for him to experience his world, with his vision limited a bit more than most his age.
He is a part of a beautiful family and is surrounded by uncles, aunts, grandmas, grandpas and family friends. He lives in a lovely neighborhood, where he has made friends with other little people his age, and spends his days as any two year old does, at school while mom and dad go to work, and busy at play dates and being a beautifully integral part of his family and community the rest of the time.
Sounds great, right? Well…that is where I need to get on my baby soapbox today. Continue reading