Finding the right tone

As I write about our experiences and Barnaby’s journey something that has been very difficult is finding the right tone to portray the reality of the situation. Sometimes I find myself spinning things very positively because that’s how I need to be thinking in that moment, other times I am able to write more realistically about the more terrifying details. 

As I go back and read this blog from the beginning I find that updates all sound a lot more positive then either of us were feeling, especially in those early weeks.  The birth story is traumatic and Ana has been suffering real PTSD around many of the realities of having to be in the hospital every day after what happened.  Today marks day 107, almost a third of a year of hospital life since Ana went to the emergency room pregnant and unsure what was happening in a city that we don’t live in. 

These days have been both glacially slow and disorientingly fast.  For everything that we are thankful for there are also untold hardships and some hauntingly scary moments that we have not shared here. Some things were left unsaid because they are too hard to talk about, others because they were too small to feel important. Some of those small things grew in importance until we were caught off guard by the gravity of them as our family was literally struggling to survive. 

Here is photo of Barnaby the day he was born and one from yesterday.

A fear that we both have about sharing our experiences is that it will somehow come off as overly triumphant and diminish the terror and dread that we have had and sometimes still do have from this. Of course we maintain hope that Barnaby will flourish into a wonderful person capable of taking on life’s challenges, but that fate is not assured. There is a very real possibility that things will materialize in his development that are vestiges of the neurological trauma that he endured. Here we are 3 months later and he is still getting head ultrasounds once a week to monitor his ventricle sizes and a million other little things that are normalized for us but not how most people think of caring for a child.

On our better days his potential is a source of great joy and we can take a certain solace in the mystery of the brain and the fact that even the top neurological experts operate without any real certainties. Nobody can tell us what he will become.

On gloomy days the uncertainty of it all is oppressive and we sit around lamenting that even the top experts operate without any real certainties. Nobody can tell us what will become of him.

Barnaby’s most recent MRI last week was read by a leading neurologist at Children’s Hospital to say that his specific trauma as a premature baby with Hydrocephalus may put him at a higher risk for difficulties with language and speech. He thankfully doesn’t seem to have grey matter damage in the way that they were so worried about in the first weeks of his life. The neurologist told us that the kinds of things they might expect from his MRI can be helped by early intervention and attentive parenting and lots of real language stimulation, talking to him.

Ana looked this senior attending doctor in a white lab coat with a bowtie very seriously in the eyes and asked: “so love can help cure this?”, and he got tears in his eyes as he said yes.