Ep 180 When a Child Gets Diagnosed

A Conversation with Lisa Rigney

Let’s start the blog with the show notes for this Episode –

On this episode I speak with Lisa Rigney of the Edmonton Chapter of the Canadian Celiac Association about her family’s experience of having a child diagnosed with celiac disease.  Lisa takes us through what happened, and more importantly, how the family coped.  We all understand a serious diagnosis is overwhelming, but I think by sharing our experiences, it lets us all realize that we can only do our best in trying times.  Lisa explains some of the situations she wasn’t prepared for, as well as the discussions she had with other family members, friends and the school.  At the end of our conversation, we agreed to meet up again soon to talk about the support systems available to families of the newly diagnosed, and expectations as the child gets older.

Sue’s Websites and Social Media –

Podcast https://acanadianceliacpodcast.libsyn.com

Podcast Blog – https://www.acanadianceliacblog.com

Facebook – @acanadianceliacpodcast

Twitter – CeliacPodcastCA

Email – acdnceliacpodcast@gmail.com

Baking Website – https://www.suesglutenfreebaking.com

Instagram – @suesgfbaking

YouTube – https://www.youtube.com/playlist?list=PLUVGfpD4eJwwSc_YjkGagza06yYe3ApzL

Email – sue@suesglutenfreebaking.com

Other Podcast – Gluten Free Weigh In – https://glutenfreeweighin.libsyn.com

My Thoughts –

I had in my notes to ask Lisa about some of the emotions she and her family felt around her daughter’s diagnosis at the time, but I didn’t expect to ask her about “guilt”, and it was something we kept coming back to.  I think we can all agree that the child who gets a diagnosis of celiac disease is alleviating themselves of many years of health issues, and that’s a good thing.  On the other hand, there is often the thought – why me, why us, why our family?

Guilt is an odd emotion.  We feel it because we think we could have done better, or because we had caused some part of an unfortunate situation.  There will always be unfortunate situations whether your child has a serious medical condition or not.  As far a celiac disease goes, it may be not packing suitable snacks for an unexpected outing, but with other children, it might be you didn’t pack an extra pair of shoes or socks after they stepped in a deep puddle. 

As parents we want the best for our kids, and Lisa said it correctly, that we’d gladly take the celiac disease ourselves than having it diagnosed in one of our children.  But that’s not the way it goes. 

Many of the families I know, have, over time, learned to be grateful for the “first” family diagnosis that led to solving the medical mysteries of other family members.  Often the “first” is in a child.  We regularly take our kids to see a doctor for recurring complaints that, as adults we might let pass.  Because they are our children, we pay more attention to their health than our own.  I suppose, that turns out to be the opposite of “guilt”.  We go out of our way to ensure the health of our kids, and sometimes that means finding out they have a condition with a genetic component, that is life long, will be difficult at first, but as it resolves, life will be good again, health is restored and often other family members realize they too need to pay more attention to their health.  Not guilt, but love.