46: Parenting a Child with Transverse Myelitis | Mary Ann McCarthy

Everything changed for Mary Ann and her family on December 20, 2017. She got a call that no mom wants to receive – her daughter collapsed on the playground. Mary Ann later found out that her daughter, Claire, has transverse myelitis. Listen in as Mary Ann shares the difficult process of coping with such a serious diagnosis and helping her young daughter manage paralysis.

Quotes:

• “You’re looking for glimmers of hope within different peoples’ stories, but also always comparing yourself, and wondering, you know, how your case is different.” – Mary Ann McCarthy
• “You’re not always getting a lot of answers, but you do find support in it.” – Mary Ann McCarthy
• “We felt like we were trying to put band-aids on symptoms and we weren’t ever getting to the root cause of what the problem was, which is a neurological condition.” – Mary Ann McCarthy
• “It’s sort of heartbreaking for me to think about all the cases out there of kids with various conditions that don’t have someone advocating for them. They don’t have somebody saying, think outside the box, they don’t have somebody taking them a second or third or fourth time. Because there’s hope in a lot of these things and there’s ways to think about conditions maybe in a new way.” – Mary Ann McCarthy
• “If we force her into a world that’s not fit for her all the time, she’s going to be frustrated and she’s going to not feel good about herself. And if we put her in a world where she feels comfortable and accepted and affirmed about the way she is, she’s going to excel.” – Mary Ann McCarthy

Highlights:

• 1:45 – The day Mary’s world changed forever
• 9:28 – What is transverse myelitis?
• 12:12 – How to get answers
• 14:06 – Advocating for surgeries
• 21:00 – A new surgery
• 23:07 – Trying to find a positive light in the midst of a wave of emotions

Speakers: