I want to write to you to tell you all the positives that can come from special needs, or rather, what we learn and how we grow as individuals raising children with special needs. I want to give inspiration rather than sorrow, the promise of a rainbow after the clouds. But I can’t. Not because I’m swallowed with sadness, I’m not, but because I’m confused.
We’re at a point where I know what to do, yet don’t know what to do. It’s an odd place to be. J has good days where his articulation and ability to have conversations is surprising, making me take a step back. There are days toileting seems to be a non-issue, hygiene might show promise, the meltdowns are at a minimum. Then he doesn’t sleep and it’s all gone. I know this cycle. I know this is what’s going to happen with the combinations of disorders he has.
I know he needs an IVIG infusion. I know insurance likely will refuse our appeal, that Medicaid, in its current state, will likely not pick up the (very expensive) treatment, leaving the only other option to be even more invasive and risky – surgery. I know this, and I know it’s all a waiting game…but it seems so unfair.
It’s unfair that he can’t have 2 days in a row that are good without a week of havoc to follow. It’s unfair that the progression of treatments have failed leading us to where we are now. In the hurry up and wait game. The confusing area of what to do next if we can’t get this covered.
It’s unfair that his epilepsy went undiagnosed (despite our efforts) for 5 years, permanently damaging his brain in ways we can’t comprehend, and yet, we’ve done all that we could since and our next step is being dangled in front of us, just out of reach. And we have to wait to see if they’ll give it to us, or take it away.
So I’m left in the confusion of how I’m going to advocate for my son. How I’m going to quiet is seizures and help him move towards a more promising rainbow. I’m confused and uncomfortable with the waiting for treatment when the urgency for treatment is so great. It makes no sense to me.
But then again, not much of this journey has…