Marie Carter

Topics discussed:

Explaining Celiac to family members
Contacting your child’s school

Video Text

Oh family. It’s very hard as a parent to realize that there’s something wrong with your child. But it’s also hard for a grandparent to realize there’s something wrong with their child. One of the reasons is, you have to think back and think “There might be something wrong with me.” And some people have a hard time with that.

Aunts and uncles, a tough time understanding – although, even though they tried very, very hard, sometimes things – you know sometimes she got a hold of something or they would give her something, not knowing that it wasn’t OK. Other times, there were times when they would say “Oh you can have just a little bit of this.” And my older daughter, who’s only 3 years older than her said, “No she can’t!” So it was difficult. In fact I think we’re still dealing with some of that. I’m not sure it will ever stop. I don’t know that there’ll ever be a time when anybody understands this as well as we do – you know – being her parents.

I was a teacher in the same school that she attended in elementary age. It was still a very difficult thing. And they were very supportive but they didn’t understand. So going down to the cafeteria and talking to the lady, she had 600 other little people to take care of. We tried cafeteria food, but my daughter mostly just carried her lunch and brought it.

I think the very best thing that I could say at the beginning is to persevere. If know something’s wrong with your child, you know your child probably better than anyone else. So persevere, don’t let the guilt take you over, and know that this is not the end of the world. Because it’s going to be hard. It’s not easy but you will survive. I did! I know you will.

I’m Marie Carter. My daughter is 22 years old. She has Celiac Disease. And we are living our life.