I feel like there’s a gap. Between when things happen and when I feel them. When I think back to when Mikaere was born and we were faced with one giant crisis after the next, each one worse and scarier, each one forcing us to examine our thoughts on life and death and what we value and what we love… there is a thing that happened. You just face the next thing, you put all your feelings to the side, and you just get on with it. There is no time to process, no time to recover, no time to feel.
My baby is having seizures. My baby has been admitted to hospital. My baby’s seizures won’t stop. My baby is in intensive care and in a coma and there is nothing they can do and we’re having an emergency baptism and we’re being moved to hospice on end of life care.
We were reacting to what was right in front of us, making logical decisions about what was important to us.
I didn’t feel the feels. You can tell, when you look back through my instagram posts. There’s one when we’re in the ambulance being blue-lighted to hospice. That’s usually a 45 minute drive. We did it in 25. In the post I talk about how quick the drive was, but I’m not talking about the dread, the fear or all of the feelings.
Being told there was nothing else they could do, that my baby was going to die and that we were going to hospice to wait for that moment – it was just another thing in a series of things that were happening.
By then I was emotionally numb to the constant depth and severity that come with big moments like that one. I had long stopped feeling my feelings.
That was two years ago, and it’s only now that the genuine emotional backlash of all that is being worked through. I’m emotionally raw and it’s all just under the surface all the time. I feel like I’ve been emotionally flayed with two years worth of emergencies.
But we’re in a time of calm at the minute (kind of). It’s been a year since Kai’s last admission (can we take a minute and just marvel at that?!), and we’ve enjoyed being at home. Don’t get me wrong, there is always and forever the tense anticipation of it everything going downhill. I feel like I’m constantly on edge with ‘is this it? Is this the beginning of the end?!’
But at least I’m feeling the feels. The gap between feeling the feels and what’s happening, it’s closing. It’s hard, because I don’t know how to manage the feels and cyclic grief and all the things, but I’m trying.
Oh special needs life. Onwards we go.