28. Sharing Story’s Story, Life and Living with Special Needs & MED12 - Amber Frye

The Mother's Embrace

“We really feel strongly and passionately that our most important job as her parents is to give her the biggest piece of paper we can find and let her write her own story.”

Welcome, everyone! In today's episode, we have the honor and gift of sharing Story’s story. Story was diagnosed with MED12, a very rare genetic disorder that is not commonly presented in girls.

Today, Amber talks to us about her experience growing her family, raising Story, shifting perspectives after her diagnosis, Story’s developing personality, having a new experience with her second baby, Nova, and looking ahead at the future.

Amber Frye is a mother to two, wife, entrepreneur, and musician. Amber’s strength comes from her experience as a mom since her daughter, Story, was diagnosed. She is determined to help other moms navigate their lives while raising kids with special needs.

Also on today’s show, we get a peek into a day in the life in the Frye household. Tune in this episode to hear more. Here we go!

In this Episode You’ll Learn:

• [06:26] A quick snippet about Amber.
• [09:30] What it was like growing her family.
• [12:17] The day I met Story.
• [15:04] Amber’s experience with Story.
• [20:44] Doing all the tests.
• [23:03] Opening up and shifting perspectives after Story’s diagnosis.
• [31:43] What is normal anyway?
• [34:17] What did Amber think about special needs before Story?
• [37:41] A day in the Frye household.
• [39:32] Amber’s advice to others regarding special needs and being a special needs family.
• [41:52] What’s a helpful thing a fairy could do for Amber?
• [43:22] Great gifts for special needs kids.
• [45:14] Amber’s advice to her younger self.
• [46:54] Amber’s experience with Nova.
• [50:21] Talking about the future as parents.
• [53:30] What is something that Amber needs a hug about?

Quotes:

• “You have to shift your perspective in the way that you look at this because it’s different.” [27:44]
• “We really feel strongly and passionately that our most important job as her parents is to give her the biggest piece of paper we can find and let her write her own story.” [28:12]
• “When yours looks a little bit different, it’s hard to not compare, to feel like you don’t stack up to other moms. That’s kind of on you a little bit.” [32:51]
• “It’s very important to feel all of the human emotions that you feel.” [36:36]
• “There’s a voice that’s going to tell you that you’re going to be in this place forever, it’s going to be hard forever… You’re not going to be in this place forever.” [45:29]
• “I know that sadness and happiness can coexist in one.” [54:01]

Connect with Amber Frye:

• Instagram: https://www.instagram.com/amberbfrye

Links:

• Let’s Write Your IG Bio FREE formula, process + worksheets
• From Social Media Stressed to Empowered in Your Online Brand $24 Masterclass
• The Lab Membership
• Shop my hand-painted Jewelry Line
• Instagram: @Rachelcamfield or @themothers.embrace
• Website: https://www.rachelcamfield.com/
• The Mother's Embrace Spotify Playlist

Resources:

• Hope Therapy

Call to Action:

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