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.’


Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Comments

  • Barb

    December 1, 2017 at 12:38 pm
    Reply

    You never get over the grief, you find a way to cope with it and live your life. You will always grieve the loss of […] Read MoreYou never get over the grief, you find a way to cope with it and live your life. You will always grieve the loss of a "normal" life for your child (and yourself). My son is 33 years old, and I feel for him because he will never be independent, never be able to make the simplest decisions about what he wants to do in life. I understand others may have greater/different problems and challenges, but I am not living their lives. Read Less

  • Diana Fitts

    December 2, 2017 at 11:52 am
    Reply

    As an OT, I've seen parents go through grief all over again each time a child reaches a new stage of life. It's hard when […] Read MoreAs an OT, I've seen parents go through grief all over again each time a child reaches a new stage of life. It's hard when a child can't go to prom or live in a dorm in college. The grief doesn't stop because there are always new experiences to tackle. Thank you for posting this and being so honest with your grief. It's a message that a lot of people need to hear. Best, Diana www.thesensorytoolbox.com Read Less

  • Lizzie

    December 4, 2017 at 3:33 am
    Reply

    HI Kate, thanks again for sharing. My Oliver is 9 and non verbal too. I am still definitely sad and like you I […] Read MoreHI Kate, thanks again for sharing. My Oliver is 9 and non verbal too. I am still definitely sad and like you I don't think that will change any day soon. Oliver has a non-autistic twin and it is so difficult not to compare (although comparing is what led to an early diagnosis). It is heartbreaking now that party invites have mainly stopped appearing for Oliver, when they want to do very different things all of the time. I still wake up and sometimes wonder if autism has been a bad dream. I wake up having dreamt that Oliver has spoken to me and I was so wonderfully happy in my dream that it makes my heart ache even more when I realise that it didn't happen. However, like you, I also notch up the successes and 'wins' and Oliver developing his own adorable character is certainly one of them. BUT it is so, so HARD. No-one can even imagine unless they are living the same life. Big hugs x Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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