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
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
https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7
https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
https://www.stitcher.com/podcast/once-upon-a-gene
https://overcast.fm/itunes1485249347/once-upon-a-gene
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