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Love the Little Things in Your Life...

11/30/2018

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I've never met another human more determined, hard-working and filled with love than my son. 

​
They said he may never walk. They said we could do PT until we were blue in the face and it wouldn't make a difference. They said he had a "cognitive disconnect" and that he'd never understand that a picture represents an object. 

Now he's riding an adaptive trike, walking up stairs alternating feet, going down them with assistance and he can jump. Now he's using sign language, picture exchange and using a communication device to tell us what he wants.

Never let anyone tell you what your child will or won't do... Even if they have special initials behind their name.  Abe will do all the things he was meant to do, when he is ready to do them and I will celebrate all the tiny-to-most (but HUGE to us) milestones in his life. 

He has taught me to slow down, to appreciate the little things, to love hard and to forgive easy. He also taught me there's a reason to smile every single day no matter how bad of a day you've had. 

You've just gotta keep your chin up, surround yourself with people who make you laugh and love the little things in your life that make up the big things. Thanks Abe. You changed my life.

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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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