Each time I sit down to write I ask myself whether the content of what I share will harm or heal the individuals at the heart of the story.
And whilst this generally takes the form of assessing whether the information I’m sharing takes away from the dignity of the victim, or hopes to aid the cause which may repair the ‘crime’ responsible for their harm, today it’s a little different.
Today, I feel I owe an update on our own two boys and the health struggles which we found out about, last month.
I do so cautiously, conscious of the stigma around brain related ailments. How do I take you into our confidence without infringing on their own rights to medical confidentiality, in the same way I’d protect the identity and autonomy of a child not born to me?
I’ve circled the drain on this a little and feel it prudent to disclose the following:
Despite our hopes that further investigations would dispel initial concerns about anomalies within both of our boys’ brains, specialist consult has confirmed our fears, and both Harvey and our unborn baby boy, have abnormalities in their brains, within varied impact.
Typing that out feels absurdly permanent.
At this point, we are approaching Harvey’s cyst non-invasively, and we will not be operating. In consult with his neurosurgeon, this seems both the sensible and medically appropriate option. He will be closely monitored for recurrence of symptoms, and regularly have additional MRIs, but at this point, the cyst doesn’t seem to be causing damage to surrounding brain tissue (hallelujah).
Sitting with the fetal specialist, specifically declining termination for our baby, who is already such a loved and wanted real member of our family, felt surreal. We are unwavering in our desire to see this precious boy and sit in faith that he’ll come out perfectly the way he should- whether that meets medical perception of genetic perfection or not.
The abnormality initially spotted is more pronounced than we thought, but as precious Soph responded to the news yesterday, ‘Ma, he wouldn’t fit in here if he was ‘normal’’. And that’s just it. He will be perfectly perfect however he emerges.
And for this we are immensely at peace.