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Apr 11

Thoughts on a Three Year Anniversary

Marc told me once that he thought losing a child is the worst thing. Losing a child slowly is the second, and watching your child suffer in pain is the third worst thing that any parent can go through. Sam wasn’t ever near death, but the pain and the trauma is something that I don’t think any of us will ever fully get over.

My life is separated into two parts, before the accident and after. I trace back to this time three years ago, before the pseudo tumor diagnosis, when he was in so much pain and nobody knew why. I remember the sheet of paper on the refrigerator that I used to track which medication I gave him and when. I remember the white rice he ate, endlessly, because everything else tasted terrible. I remember how he cried, how he screamed in pain and would pass out in the middle of it and wake up screaming again in an hour. I remember standing in his hospital room, as the medical rounds were happening, and every specialist who came in had a different prognosis and treatment plan. I remember falling apart on the cleaning lady who came in to replace the toilet paper, because I couldn’t hold it in any longer. Nobody knew what was wrong with my baby, nobody knew how to fix it, and I couldn’t see any way out.

It was simply horrific, and as much as I want to, I’ll never be able to forget.

Things are on the cusp of changing suddenly. Or not suddenly. We’ve been moving to this point since the accident. He’s been healing, and growing and getting ready for this for years, and I find myself, today, on the edge of Sam starting back at school (albeit on a very reduced schedule) thinking back on where we were and what we’ve done. The decisions we made when nothing felt like a choice, and what the ramifications of those decisions were on all of our lives.

Could we have accepted the blindness earlier? Done more, sooner? Did I shelter him too long, let him stay home and safe and accommodate the disability instead of teaching him how to deal with it? Was it a choice? Or was it always going to have to come from Sam, was it always going to be when he was ready to make these changes and not a moment before?

Sending Sam back to public school, even on a very limited basis terrifies me. I’m afraid it won’t go well, that he’ll hate it, that he’ll convince himself that he CAN’T do it. I’m afraid of sliding back into that place, that dark, dark place, where he was afraid to leave the house, afraid to go to a store or out to a party. I’m afraid if school goes badly, it’ll teach him that he can’t do any of those things.

I hide all of it. I fight for him to go to school. I fight with everyone. I cry at so many meetings and gatherings, I’m pretty sure the school system gave in and did what I wanted just to make sure that Weepy McGee would stop showing up everywhere and sobbing all over them. I’m the public school cheerleader, promising incentives for going when he’s reluctant, doling out video games and trips to the Dollar Tree with reckless abandon. I say all the right things because he needs me to believe that he can do this. And so I believe. Even when it terrifies me.

Because, in the end, this isn’t about me at all. And whatever happens, if he thrives in public school, or hates it and comes back home, it’ll still be the right choice for him. Sam has survived unimaginable pain, and the slow loss of vision. He’s learned that terrible, awful things happen when your mom is right next to you, with no warning and it’s nobody’s fault. He’s learned things that I never wanted my baby to know, how to manage pain, how to distract yourself from loss, and how to claw your way back to normalcy. Wherever this journey takes him, I know he’ll get there in his own time.

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