Cure JM Foundation 2018 National Fundraiser

The Father Experience

Dads in Focus GroupDads play a unique and important role in their family, especially when dealing with chronic illnesses such as Juvenile Myositis. This session included the following topics:

  • Medication basics
  • How dads can be involved and maintain good communication with kids, doctors, partners and employers

John Kara, Co-President, Dallas-Fort Worth Chapter of Cure JM, co-led the session and offered some background on this special session.

“I sat in on the dad session last year and this was my first time helping lead a session. I was struck this year by how many dads we had that were within the first year of their kid's diagnosis. As a dad who went through that, I know it was a source of comfort to these men to hear of others shared experiences. That first year is so tough because of the firehose effect of the new and strange information and worse, the disinformation as you try to research and learn yourself and inevitably track in the wrong direction from time to time. It is a grounding experience.”

Dads at conferenceJohn described this year’s session, “The room was packed. We went around the room and each dad got to briefly tell their story. The process itself was therapeutic. It's tough being a dad in this scenario. I know in my house, as primary earner I have to budget my JM time around my job. My wife handles the kids’ health and doctor’s appointments, etc. You feel doubly helpless.”

John shared how the session is an incredibly personal one for him.

“I told my story of how I'm haunted by my failure to figure out something serious was wrong sooner than I did. I asked around the room who else carried guilt over that, and about every hand went up. I offered that we're not all stupid and unobservant in the room, and that the dads needed to find a way to forgive themselves for not detecting the problem sooner.”

John continued, “Our daughter is in remission and we have major problems now with effects of medicine. The dads were riveted to stories about what to watch out for once they get to that stage of disease management with their kiddos.”

John thinks the father session fills a great void. “When it was over we all wanted more time. We barely scratched the surface of what folks might have wanted to discuss.”