The last three months have been tricky… all of the baby/medical stuff of the day to day aside, this whole time I feel like I’m still coming to terms with the idea that I’m raising a special needs child. A disabled child. It’s a concept/reality I’ve been mulling over while my everyday unfolds around me.
For a long time I ignored the future possibilities, my baby was beautiful and you’d never know he had a horrid metabolic issue. He was just a little baby boy and if no one mentioned anything about disabled futures I could live in the happy denial bubble indefinitely, and I did. Right up until we were back in hospital. Then we switched between no future with horrid end of life directives and whatever future would be allowed to us once the seizures were done messing up Kai’s brain. It was made clear that damage was being done with all his seizures.
When we came to hospice we were shown what that second future might look like. There are some severely disabled children here. No one asks or tells about diagnosis’s. There are enough children here in wheelchairs, who are nonverbal and different. Disabled. Children with special needs. And it’s difficult, facing them at every meal, in the corridors, with the different noises and teeth grinding and the drool. The odd movements, the vacant stares, the different facial expressions. Almost all the nonverbal kids are either eating paste or fed through pumps. They’re talked over the top of, or when they’re talked to, it’s in a funny sing song rhetorical way. And every time I see them, I think this is our future.
It took a three days or so at hospice before I stopped looking away like I would have in the before. Before, while I was out and about, if there was a disabled child in a wheelchair I would have said it was rude to stare and averted my gaze. Now I know it wasn’t that it was rude at all, but that I was uncomfortable. I was uncomfortable with those less able than myself. Shame on me.
Now I greet these kids by name, and I talk to them. I ask about their days and I study them, while I wait for a response. Sometimes I get one, a noise, a movement. Sometimes I don’t.
I watch their parents, who laugh and mop up the drool and talk and sing and love on their kids so hard. The parents here are joyous, like they’ve taken it all in their stride and are doing the best they can by their kids. Don’t get me wrong, I’m sure there is a difficult side, but here at hospice when there is so much help and support respite parents are joyous with the time and help and the break.
I’m still coming to terms a very very different world than what I imagined. Before Kai was born I’d planned to go back to work. Letting go of that plan, the one where Kai is healthy and I can go back to work was difficult. But this week I emailed my accountant to begin the process of closing down my company. I stopped drawing a salary. I closed off all the services I won’t be using. And I hate this, I hate that I’m not earning, that I’m not supporting myself independently or contributing financially and having to rely on Sam for money. I’ve had to swallow my pride and recognise that this is what’s best for our family, that Kai’s needs go over and above a typical 3 month old, and he will forever need help. That this phase of intense caring is not temporary, he will not grow and become more independent. He will forever need me to be his carer.
And so I filled out the 30 page form for the disability allowance. The first question took me a good day or two to answer. It asks if we’re applying under special conditions. If, according to his doctors, whether his disorder is terminal and is not expected to survive the next six months.
I ticked the yes box, at the urging of our nurses. I felt like I was betraying Kai and my hope for him. The next 29 pages were equally brutal. Each question asked for extreme detail as to why my son was disabled. And with every question I answered the denial bubble took a beating. By the end of the form it had popped, and I was exhausted, and sad. So so so sad.
Accepting our reality and our future, grieving our dreams for our son, and living each day as it comes and no more has been horrid. I’m still wrangling with it, to be fair.
Pragmatically I know that I need to get through this dark patch to the other side, where I can move forward and do all the things I can for Kai, to improve his quality of life.
Emotionally I’m not there yet.
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