Small head, big heart

One of our adopted sons, Nick, has microcephaly, which means his head size is much smaller than normal. Consequently, his brain is also smaller, but he has suffers from extreme brain damage. The medical assignments are extensive and include: extensive polymicrogyria, abnormal myelination, mild dysplasia involving the cerebellar hemispheres. Nick also suffers from cerebral palsy, specifically left-sided hemiplegia, and seizures, which are currently under control with three different medications twice a day.

Oh, wait! There's more. He has profound hearing loss in his right ear with moderate to severe in his left. He wears a hearing aide in the left ear, but lately even that doesn't seem to help. Thankfully, we all know basic ASL and we're able to tell him from across the room to go clean up, etc. without informing the entire neighborhood.

Nick wears an orthotic on his left leg to stabilize his ankle and cause his heel to strike the floor when he walks. He tends to toe-walk on that side because his muscles are so tight. He has use of his left hand, but your heart will break as you watch him struggle to manipulate those fingers to button a shirt or zip a jacket. He can do it, but it takes time and enormous amounts of mental energy for his brain to tell his hand how to move.

Nick has always had issues with eating, although lately he can't get enough macaroni and cheese. His gag reflex is very sensitive and it's common to watch him choke on simple food. He's become quite good at using his tongue to push the food to another part of his mouth so he can continue to chew, but those first few months after bringing him home were nightmarish. Vomiting at EVERY meal, three times a day, seven days a week, four weeks a month, you get the idea. To see this child now go to a restaurant and actually ask for food and then eat with no issues, well, it brings tears to our eyes every time.

Nicky has global delays, which doesn't mean he's stupid. The child is quite smart and adaptable, but he's delayed. Sure we give him breaks, but he's also expected to do his chores like the other children. We always set the bar high for him and guess what? He eventually will reach that bar (OK sometimes he uses a bar stool to reach higher, literally, but I'm amazed he can keep his balance for that long while showing some serious problem-solving skills!) and we raise it even higher.

The one thing DOESN'T have issues with is showing how much he cares about you. He's a little love who hugs anyone and everyone. He genuinely feels LOVE towards you, unconditionally. And he seems to know who in the room needs that hug. After church one day, he sought out our priest at the time, who happened to be a man with little patience or tolerance for children, walked right up and wrapped his arms around the grumpy man's legs. Even said "Aw, love you!" The priest was stunned and you could see him immediately relax, almost as if Nick's loving energy passed right through his grumpiness.

So, this is Nick in a nutshell. Unpredictable, loud, whiny, energetic, enthusiastic, spontaneous, loving, caring, frustrating, challenging, joyful and amazing all wrapped in a skinny, little boy package.