I Thought You’d Be Over The Grief By Now

I had dinner with an old friend a few weeks ago and inevitably the conversation turned to autism and grief. It always does. My world is autism. The crazy roller coaster that it is.

Over a much needed glass of wine I told her about the roller coaster of my life. I always preface by saying, it’s a lot. I swear I’m not exaggerating.

I told her all about Cooper’s wins lately. I told her about his new autism center and how we are done with public education and emphasized how stressful it was to make those decisions. I told her I should have quit my job when he was born. It probably would’ve been easier and saved me a lot of stress. But, we joke that it’s a good thing I didn’t. I probably would’ve lost my mind by now.

I went into detail about his latest diet modifications and supplements and the huge successes that came from cutting out gluten and dairy. I told her that he is officially potty trained…a skill I never truly believed he would master. We did a quick toast over that one. No more diapers for this mama. I told her about I lived on my bathroom floor every second I wasn’t at work training him. From start to finish it took three weeks. I told her about the enemas and stress and that I swear I’m a different person after that ordeal. She laughed of course. I was serious though.

We talked about his latest regression and struggles and how stressful autism can be. I told her how physically and emotionally tired I am. Tired of fighting with insurance companies and doctors. Tired of advocating. Tired of carrying the weight of this little persons disability and his unknown future. I told her about the guilt I have with Sawyer. And how I worry constantly that I am spoiling him too much. I told her about my latest fight over a stroller.

I told her how ultimately that all of it makes me sad. My son has never spoke, made a friend, went to a birthday party, sang a song or played a sport. I still struggle to accept that it might never happen. I love him so much and accepting that this is forever is really, really hard. I told her I’m scared all of the time. I’m scared of puberty, the future, when he’s 180 pounds and when I can no longer care for him.

I’m sad that he isn’t going to live life to the fullest. Whether it’s politically correct or not I’m heartbroken that he is missing out on all of the experiences life has to offer.

I told her how some days, for brief seconds, I’ll forget that he is autistic. I’ll think this is going to be okay. That maybe he’ll snap out of it. And then the second is over.

I told her my heart is broken and I’m worried it might always be.

She listened to every word I said. She let me word vomit all of my worries and fears. And then she said, ’Don’t take this the wrong way, because I don’t mean it mean, but I thought you were past all of this by now. You seem so strong and OK with Cooper’s autism. I’m just confused. I really thought you’d be over the grief by now.’

There are a hundred ways I could have responded to her. I could’ve been angry with her. I could’ve snapped back. I didn’t though because I actually understood what she meant.

I simply said, I thought I’d be over the grief by now too.’

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