25 FebA new treasure.
We have a precious new butterfly – a fragile little boy who desperately needs love and tenderness. Noah has a rare congenital brain malformation which particularly affects his cerebellum, the area which governs movement. He has developed hydrocephalus (fluid on the brain), and may have additional challenges such as heart defects, other neurological issues, or abnormalities of the urinary tract. His presentation is complex, and it’s hard to tell what his future holds.
We do know a little about his past though. He was abandoned at around 7 months of age, most likely when his condition started to become more apparent. We can’t even guess how afraid his first family must have felt as they watched their little boy develop and realized things were not right. They might have noticed his skull slowly enlarging, or his motor development lagging. They might have always been aware of his unusual facial features, but never dreamed that things would get this hard. We don’t know their circumstances or what they went through, but their hearts must have shattered into pieces as they walked away from their son.
For the few months after abandonment, Noah’s care was challenging. His appearance is quite confronting for carers unaccustomed to such sick children. His large head circumference and rolled back eyes are startling. His movements are jerky and it’s difficult even to know how you should pick him up. Compassion was never lacking, but fear and uncertainty prevented Noah from getting the care he needed.
And so Noah has come to us, and it is our privilege to learn how to comfort him and meet his needs. It’s not an easy task, even though our staff are experienced in caring for critical children. Each new child brings new challenges – it’s like performing a dance you know well, but with a brand new partner. You have to slow down, count your steps, and align your interpretation with your partner’s. That’s where we are with Noah – slowing down, counting our steps and taking time to find out how he feels.
In the short time he has been here, we are happy to say that we are finding our feet with him. The sores on his skin are healing, he’s eating well and sleeping well, and generally seems to be quite settled. We will be looking into shunt placement, to reduce the pressure in his skull, and continuing to monitor his many difficult medical needs. But underneath all these complications, Noah is still just a baby. He needs the same things all babies need – good nutrition, tenderness and respectful love. When you think about it, some things aren’t complicated at all.