Words don't seem adequate to describe the feelings I've experienced while waiting as my little girl underwent neurosurgery. Simply sitting here, taking myself back there allows dark emotions to resurface. It hurts, physically aches, nothing compare to this
As the mum of Darcy - my gorgeous 10-year-old daughter who lives with hydrocephalus - I've had to live through this three times so far.
Darc was diagnosed with hydrocephalus just after her first birthday. The first time our GP alerted us that something may be an issue was during a routine assessment - her weight and length were average; her head circumference had grown disproportionately in a small amount of time. It was then hydrocephalus was first discussed.
From that moment, it seemed we were on a bolted horse. Our beautiful girl then underwent unltrasounds of her brain, CT scans and a confirmation of hydrocephalus.
The day after diagnosis she underwent her first neurosurgery to insert a ventriculo-peritoneal shunt. Simply put - an artificial drainage system for CSF from her brain, down a synthetic tube which sits beneath her skin, into her stomach cavity.
Darcy's journey is much like anyone's living with this condition in that daily life is dependent upon the function of her shunt. She's endured partial blockages, shunt malfunction, seizures and three neurosurgeries as well as spinal taps, shunt function test and countless MRIs and CT scans. Compared to many, this is a good run - so far so good!
I have moments when I reflect and can barely believe we've all lived through these experiences. As parents we would do anything to carry any burden if it meant our child would be free from pain. Before Darc experienced her first surgery, I remember waiting and not knowing what was next; feeling helpless and honestly not knowing how to get through the next day. Knowing only that I wasn't able to carry the load for my precious girl, feeling like a bystander on the hardest day of both her life and mine.
Since then things have changed. Whenever her shunt malfunctions, I know what may lay ahead. I know hard it's going to be. Stressful beyond belief. And nothing's going to change this.
It's hard to identify which moment is more painful - talking her through what's going to happen? Helping her deal with the prospect of more needles? Her negotiating that she'd prefer gas than an IV injection to go to sleep? Watching her remain so calm and non-complaining? Waiting and pacing the waiting room until we know the operation has gone as planned without complication? Seeing her wake from anaesthesia, seeing stark reminders of surgery? Combing her hair post-surgery; watching it fall on the hospital floor?
Or never once hearing her question why this is her life?