ONCE UPON A GENE - Episode 101 - Finding Beauty and Connection When Raising a Medically Complex Kiddo with Melanie Dimmitt - Author of Special
Author Melanie Dimmit received her son's cerebral palsy (CP) diagnosis and she scoured the world for hope, stories, insight and companionship- desperate to know what she was up against and that everything was going to be okay. The result is her book, Special: Antidotes to the Obsessions that Come with a Child's Disability.
EPISODE HIGHLIGHTS
When you say not to feel ashamed of your feelings, what does that mean?
At the beginning, it's hard because you have thoughts and feelings that make you feel like a terrible person because most of us come to disability with no experience or knowledge. I thought my son having a cerebral palsy diagnosis was the worst thing that could ever happen to me or him and it felt like the end of the world. You think terrible things, you feel like you can't talk to anyone about how you're feeling, and you have layers and layers of guilt. Getting a diagnosis and learning that your child's life won't be how you imagined is a form of grief. All of this is normal. Give yourself time and don't beat yourself up as you process through the thoughts and feelings you initially have.
Were you good at processing your feelings and moving on?
I was good at being in denial and I didn't accept Arlo's disability for about six months. I began to see a psychologist who helped me to feel anger and sadness, to acknowledge how hard it is and that it's okay to feel how I feel. Professional help and connecting with other parents while writing my book helped me feel less alone.
What moments with Odie do you savor because of Arlo?
Everything. As she was growing up, it blew our minds how easily things came to her as we were working so hard with Arlo. Arlo is nonverbal, he doesn't roll, he doesn't sit and left to his own devices lies on the floor with a big smile on his face. He needs a lot of support, nothing comes easy and he's worked incredibly hard for head control, core strength and fine motor skills. There's a bitter-sweetness to Odie growing and hitting milestones, but having Arlo has made us more relaxed and better parents to Odie.
If you were asked to submit a story to your book today, what would it be?
Special is a gaping wound for me, though I'm glad it's there for parents just starting their journey. I feel entirely different now. The old me wouldn't want to hear the new me saying it's fine. I'd say to old me that I know I think people are pretending it's okay when it's not, and they're making the best of the scenario, but I promise that's not true. I promise you that you'll never wish this away. It's hard, unfair at times, times that Arlo is unwell and it's awful, but I wouldn't change any of it. Arlo is a phenomenal person, he's so much cooler than you can imagine. You are happier and more fulfilled than you ever would have been without Arlo.
RESOURCES MENTIONED
Special: Antidotes to the obsessions that come with a child's disability
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