57: Parenting a child with KAT6A | Audrey Conley

Audrey and her husband knew something was different about their son moments after his birth. But it took 10 years to get an accurate diagnosis. Join Audrey and Emily as they speak openly about the challenges of raising a child with a rare genetic condition.

Quotes:

• “I’m not meaning this in a negative connotation, but just to explain to people out there, I feel like I am with a perpetual baby, because I have to literally get him out of bed, help him go to the bathroom if he will go, feed him, dress him, get him ready for his day, brush his teeth for him, wipe his face off. I’ve been doing this for 13 years now, and some days are easier than others. Some days I can fly right through it and not think about it. And other days it’s just a little bit of a pity party for myself.” – Audrey Conley
• “We’ve lost a lot of friendships, and I don’t blame people for not wanting to be a part of our world. That’s a hard reality. You lose a lot of friendships, but at the same time, you gain some of the most special people in the world.” – Audrey Conley
• “You got to seek out other people. There are other people like yourself that are in your situations, even though you feel very alone. Find your tribe, because that’s what we call it these days, right? Our tribe.” – Audrey Conley

Highlights:

• 1:13 – KAT6A
• 8:18 – Navigating the diagnosis
• 10:49 – Finding a solution
• 12:41 – A day in the life parenting a child with KAT6A
• 13:36 – Dealing with the loneliness of special needs
• 15:10 – Finding a community
• 17:32 – Preserving your marriage while parenting special needs

Speakers: