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The True Meaning of Joy

12/26/2017

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 In this house we celebrate the little things.  This year, I found my joy in the fact that Abram was interested and able to tear into and open his own gifts. It wasn't long ago that the sound of tearing paper would send him over the edge and we would have to retreat while everyone else got to open their gifts. This year he wanted to open ALL the gifts.... even his cousin's.

When he really liked a particular toy or gift, he'd sign "open, open, please!" and have us pull the toys out of the box right then and there. His favorites so far were a large garbage truck, a cool semi his grandma got him that shoots cars out the front of it and a very special swing he can get into. I was hesitant about the swing and was worried that it might not be a good fit for his sensory needs. We'd tried something similar at therapy years ago and it did not go well, so I'd put this purchase off for a great deal of time.  It turns out, he LOVES it and could spend a great deal of time just hanging there getting pushed in it. By the time he's done, he's literally folded in half and happy as can be.

My favorite part of the Holidays is getting to see all our favorite people. My dad was able to come visit us and he brought Abram a school bus from he and his wife, Dorie. Abram LOVES his Gramps n' Nana so he always gets so excited to hear that his Grandpa is coming for a visit and of course I have a video of such excitement. The fact that he says "yeah" seriously makes me want to cry all the happy tears.

Two of my oldest and closest friends were able to stop by with their husbands. I am always elated when our friends are able to come and visit. We live just far enough out of the city that it requires effort and planning to do so. I'm very lucky to have these great people in my life. Especially when the embrace my child and love him like he is their own family. Abram is lucky to have a very special "auntie" or two.

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We also were able to see my husband's side of the family and spent Christmas Eve day with all of his cousins, his Grandparents, and he even got to play a fun game of "Plinko" where he won $16 and he was quite proud. He definitely did not want mom taking the money for safe keeping. He wanted to hold on to it tightly, which made me giggle. He had a blast putting the coins into the plinko game and was so excited to sit on the floor and open all his new toys. He now even has his own little dedicated device to watch his youtube videos on which is something that helps him calm down and gives him much enjoyment!

For me, the true meaning of joy is seeing Abram overcome his fears and do the things that people told us he may never do. He is such a hard worker and fights hard for the abilities that he has and the hurdles he's overcome. 

Seeing my little boy getting excited to see his family at Christmas is heart-warming. He's such a sweet little boy who wants to be friends with everyone. He has so much happiness inside of him that I turn to him on hard days and he always finds a way to make me smile. His hugs are amazing and I couldn't be more proud of him.

He's been through so much, he's accomplished even more and every single year he seems to do all the things that we were told he may never be able to do.  In 2017 Abram learned to say "mom" again, he learned to ride an adaptive trike, he mastered a rock wall, he's running, learning to do stairs, learning to communicate with an iPad and is making new sounds almost every day.  He never ceases to amaze and surprise me and I cannot wait to see all the wonderful things he'll be doing by Christmas next year.

I hope that your Holidays brought you joy and happiness - even if it is simply the sound of your child tearing gift paper or getting a hug from someone you love. For us, all the important things are indeed the little things in life and I am grateful for all of them. ​

Excited to see Gramps today? "yeah!"

A post shared by Erin Miller (@abrammayhem) on Dec 17, 2017 at 4:49am PST

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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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