Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom

ONCE UPON A GENE - EPISODE 177
Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom

Alyssa Poskarbiewicz is a mom to a daughter Lenny, who has CHARGE syndrome. I actually got to meet her in person last spring and she's beautiful inside and out. I think you'll enjoy our conversation, but also go on to listen to all the past Once Upon a Gene episodes, especially the once-monthly storytelling episodes, which Alyssa has contributed to.

EPISODE HIGHLIGHTS

What are your concerns and how do you decide what to share about Lenny online?
It's personal for everybody. There are times that I feel a need to share personally and times when I pull back. Interestingly, people will often reach out when I'm not sharing to make sure everything is okay. I wasn't someone to share personal things before, but I needed a different level of support and this journey looked different than it did when I had my first child. I didn't have friends with children in the NICU or born with serious medical concerns. I didn't know anyone with a personal experience with a rare genetic disease. I used social media to seek out resources, podcasts and communities, which has been helpful to me and allowed me to open up more. 

How do you move through situations or moments when people make comments that bother you?
This is a practice and it takes time to get here. I started trauma and processing therapy last fall and I've found it to be tremendously helpful because I was very easily triggered by hurtful comments before. I have made a lot of progress in letting comments slide, but I'm still working towards this practice that really depends on whether or not I'm in a good place and how my daughter is doing at the time. Sometimes I can brush things off and sometimes things strike me and I need to vent and talk through my feelings. 

Can you talk more about the type of trauma therapy you do and what you've taken away from it?
When we were in the NICU, we were assigned a therapist and I first connected with her. She would come in casually to talk through the diagnosis and things coming up in the hospital. She would also come in to talk with us at subsequent hospital stays. She recommended trauma therapy to me, so I found a therapist. We started with EMDR- reprocessing because I was experiencing a lot of PTSD. We did several sessions of EMDR, which I found to be helpful. Then we moved on to general processing, talking through things, processing emotions and moving forward.

LINKS & RESOURCES MENTIONED
ONCE UPON A GENE - Episode 139 - Remember Who You Are
https://effieparks.com/podcast/139-remember-who-you-are
Courageous Parents Network
https://courageousparentsnetwork.org/
Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life
https://www.amazon.com/Emotional-Agility-Unstuck-Embrace-Change/dp/1592409490

TUNE INTO THE ONCE UPON A GENE PODCAST
Spotify
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
Apple Podcasts
https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
Stitcher
https://www.stitcher.com/podcast/once-upon-a-gene
Overcast
https://overcast.fm/itunes1485249347/once-upon-a-gene

CONNECT WITH EFFIE PARKS
Website
https://effieparks.com/
Twitter
https://twitter.com/OnceUponAGene
Instagram
https://www.instagram.com/onceuponagene.podcast/?hl=en
Built Ford Tough Facebook Group
https://www.facebook.com/groups/1877643259173346/

Interested in advertising on Once Upon a Gene? Email [email protected] for more information!

ONCE UPON A GENE - EPISODE 177

Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom

Alyssa Poskarbiewicz is a mom to a daughter Lenny, who has CHARGE syndrome. I actually got to meet her in person last spring and she's beautiful inside and out. I think you'll enjoy our conversation, but also go on to listen to all the past Once Upon a Gene episodes, especially the once-monthly storytelling episodes, which Alyssa has contributed to.

EPISODE HIGHLIGHTS

What are your concerns and how do you decide what to share about Lenny online?

It's personal for everybody. There are times that I feel a need to share personally and times when I pull back. Interestingly, people will often reach out when I'm not sharing to make sure everything is okay. I wasn't someone to share personal things before, but I needed a different level of support and this journey looked different than it did when I had my first child. I didn't have friends with children in the NICU or born with serious medical concerns. I didn't know anyone with a personal experience with a rare genetic disease. I used social media to seek out resources, podcasts and communities, which has been helpful to me and allowed me to open up more. 

How do you move through situations or moments when people make comments that bother you?

This is a practice and it takes time to get here. I started trauma and processing therapy last fall and I've found it to be tremendously helpful because I was very easily triggered by hurtful comments before. I have made a lot of progress in letting comments slide, but I'm still working towards this practice that really depends on whether or not I'm in a good place and how my daughter is doing at the time. Sometimes I can brush things off and sometimes things strike me and I need to vent and talk through my feelings. 

Can you talk more about the type of trauma therapy you do and what you've taken away from it?

When we were in the NICU, we were assigned a therapist and I first connected with her. She would come in casually to talk through the diagnosis and things coming up in the hospital. She would also come in to talk with us at subsequent hospital stays. She recommended trauma therapy to me, so I found a therapist. We started with EMDR- reprocessing because I was experiencing a lot of PTSD. We did several sessions of EMDR, which I found to be helpful. Then we moved on to general processing, talking through things, processing emotions and moving forward.

LINKS & RESOURCES MENTIONED

ONCE UPON A GENE - Episode 139 - Remember Who You Are

https://effieparks.com/podcast/139-remember-who-you-are

Courageous Parents Network

https://courageousparentsnetwork.org/

Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life

https://www.amazon.com/Emotional-Agility-Unstuck-Embrace-Change/dp/1592409490

TUNE INTO THE ONCE UPON A GENE PODCAST

Spotify

https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7

Apple Podcasts

https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347

Stitcher

https://www.stitcher.com/podcast/once-upon-a-gene

Overcast

https://overcast.fm/itunes1485249347/once-upon-a-gene

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/

Interested in advertising on Once Upon a Gene? Email [email protected] for more information!