Since Christmas Kai has had a new community neurologist. I’m not sure how I feel about neurologists. Most are fairly logical and we get the ‘we can’t treat the underlying disorder so let’s just make Kai comfortable’ line over and over.
Our new neurologist… he’s a bit different. Typically you like your doctors, as someone of authority holding lots of trust over your health, to be straightforward and logical people. Our other neurologists with the doom and gloom line have been. Very logical. Very straight forward. Very doom and gloom.
Our new guy is much more stream of consciousness than linear and straightforward. His mind is clearly going a kajillion miles a minute and what comes out his mouth is a stream of this point and that point with this study and that ancetodotal story.
But. A huge bit giant but. He is the first neurologist to offer us help. To offer slightly out of the box treatments to help protect Kai’s brain. He hasn’t given any guarantee’s, and as far as we can tell, there is no harm. But, he’s given us something small to try.
I think you have to be a certain kind of person to be willing to go over and above the usual ‘we only operate within the box of typical management options’ to explore other options.
Our neuro guy? He is it.
We’re willing to try it, assuming the harm is limited or can be mitigated, that there is some supporting evidence (even if it’s minor) and we put measurements in place to determine its effectiveness.
So, on one hand, hope.
On the other, at the same appointment I was completely blindsided by another sign of Kai’s disability.
We measured the circumference of Kai’s head. As far as I can tell his head looks in proportion with the rest of him, I was sure it was growing like it should. And sure, it’s growing.
But not in line with his age, weight or height. He’s in the microcephaly range. His head isn’t growing as much as it would be in a typical child, because his brain isn’t growing as a typical child’s brain is. My babies brain is not growing as it should be.
Another physical sign of my son’s disability.
It’s hearbreaking, hey. It knocked all the wind out of me, and while the appointment moved on I was struggling with all the emotions.
When we got back to hospice later that night, Kai was having a speight of seizures and as I held him outside in the hope that the cooler night air would help, I cried.
I love my little guy so much. I have so much hope, but every day I grieve for him. Every day I grieve for the uphill battle he fights in his little body.
And I struggle – trying to weigh up what’s best for him, what treatment we should and should not do, what questions I should be asking. I have to turn away from the emotional to be able to go into an appointment and have those conversations, but you can’t deny the emotional impact. It comes out and when I take the time to feel it it’s overwhelming. I find it so difficult to align my logical treatment plan and emotional sides.
Fighting for Kai, it’s an everyday, every moment thing. To be honest, some days when it’s overwhelming I hide. I’ll lose myself in a movie, or a game on my phone for a moment or two. It’s hard to switch off. I feel like I don’t know enough, that I’m not talking to the right people, that I’m not doing enough research, or not organising enough fundraising events, or just, all of the things.
I don’t feel like I’m enough, and that’s hard, because I have to be. For Kai, and his future, it’s on me and Sam. We have to be enough.