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I'm not crying. You're crying: Aka - a gift from Abe's School

5/21/2020

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Not unlike all families, COVID-19 came in and reeked havoc on our lives but for a child like Abe - the upheaval in his daily routines and the inability to see his support staff did a real number on him. 

The last 9 weeks have been incredibly difficult as Abe struggles with not understanding why he can't go to school, why he can't go into a business to push shopping carts (literally his favorite thing ever) and why we can't go inside when we do get the opportunity to grab take-out. Not to mention, he didn't get to see his daddy, his super-cool bonus mom Lesli, his big-bro Carter and their sweet dog Lincoln (who he talks about endlessly) for a month while we worked hard to keep him safe.  He's not been able to see his big sister and his brother-in-law-to-be either. Poor Abe's world got really, really small. 

With School and his private therapies - Abe has a team of well over TWENTY people to help him live his best life. As a parent of a child with complex needs (medically and educationally), it is beyond difficult for me to juggle working from home, care taking and attempting to be mom, therapist and teacher.

When I let the school know that Abram was really struggling with understanding why his whole world changed and got turned upside down, they responded in a way that I did not expect!

THEY MADE HIM VIDEOS. VIDEOS!!!

If you know Abe - his treat is YouTube. He LOVES videos of people talking to him. After seeing him struggle for months on end in not understanding why he couldn't see his people - imagine my surprise when the school responded in the best possible way! They sent me these videos - just for Abe. It made me cry.

To his school district - thank you so much for making these videos for him. It will be something I will remember and cherish forever. These little bits of kindness go so far with kids like Abram. It is much appreciated. 

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    About Me

    Erin is a green-haired, tattoo-covered mama powered by sarcasm, iced coffee, and the occasional emotional spiral.

    She’s raising an incredible son with a rare genetic condition, advocating with sharp knowledge and a softer heart — because both matter.

    She's trying not to lose her mind in a house that includes her husband, her son, her mother, a team of no less than five workers, and approximately 3,000 daily interruptions.

    She’s got a sixth sense for fake people, a deep love for horror movies, and a soft spot for anyone who’s ever felt like too much and not enough at the same time.

    Erin doesn’t pretend life is perfect. She shows up messy, honest, and real—whether she’s in advocacy mode, snack-fetching mode, or “why is everything a mess” mode.

    ​She’s built of grit, wit, compassion, and just enough rage to get things done.​


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  • Home
    • About Abe >
      • Abram’s Viral Photo: The Wizard of Awws (Baby Ming) | Abram Mayhem
  • Blog
  • In the News
  • UBE2A Deficiency Syndrome
    • UBE2A Publication List
    • Abram's UBE2A Symptoms and Diagnoses >
      • Abram’s Pineal Cyst Journey: Insights, Updates, and Long-Term Care >
        • MRI Imaging of Pineal Cysts in UBE2A Deficiency
    • Why Genetic Testing
  • Helpful Links
  • Abram's Art

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