When you hear the name Weis mentioned along with the word sideline, you undoubtedly think of Notre Dame football. In this case, there is a Notre Dame connection, but this story takes place miles from the sideline at Notre Dame Stadium.
Maura Weis, wife of Notre Dame football coach Charlie Weis, has written a book called “Miles from the Sideline.” The book covers her journey with her special needs daughter Hannah.
The Weis home is filled with pictures of a happy marriage, and a beautiful son and daughter. It seems like a storybook life, but getting to their current lifestyle wasn’t an easy journey.
The horses in the stable at the Weis house were a critical part of the healing that Maura needed when she suspected that something was very wrong with Hannah.
As she was developing, Hannah lost the few words that she knew at the age of two. Maura feared the worst.
Maura says, “she went from a child that wanted to be with me all the time, she wanted me to hold her while I was cooking and she wanted me to do all those mommy things and she went from that to just wanting to sit in front of the TV. All she wanted to do was watch Barney. She had no interest in the pets or her brother and that really triggered the scare in me.”
It’s that scare and her battle to save her daughter that Maura talks about in her book. Frantically searching for a reason for Hannah’s withdrawal, she began questioning herself. She says, “you look back, well, did I eat the same things when I was pregnant with Hannah than I did with Charlie, did I do anything differently?”
The answer was that Maura had done nothing wrong. Although she admits that the stress led to depression, her family, God, and animals got her through her darker days.
Maura recalls, “I had a crazy Arabian horse at the time, she was so gorgeous, she was beautiful. There's something empowering about riding a thousand pound animal and making that connection with them without forcing them to do something and I think that I find God in places like that.”
Maura’s new ride is appropriately named “ND” and while her four legged friends helped, Maura also went to therapy and tells other parents it’s a good move. She say, “it's okay if you are depressed about the diagnosis or whatever is going on with your child. I think that's completely normal.”
Initially diagnosed with autism, it took ten years to find out Hannah’s regression was caused by ESES, a severe and rare epileptic seizure disorder that caused seizures while Hannah slept. She takes medicine now and doctors say she will out grown the seizures.
Maura says because of that, she looks forward to Hannah growing up. She said, “I'm really looking forward to her becoming a mid teen, even though that's most parents nightmare. I'm looking forward to Hannah becoming a 15 year old.”
It’s not the life for Hannah the Weis family would have picked, but it’s one they accept. Maura says, “it’s the journey that you go on and you find out that God has given you a gift.”
The public attention of being the wife of the head football coach at Notre Dame might have its ups and downs, but Maura believes it’s been a positive experience. She says, “I have to look at it as a good thing. You know and I think that Charlie is here for a reason and I think that it's been a great ride. You know Charlie has got this very important job and he's with a great university and I think that he's a good compartmentalizer and I've become a good one too. He’s great with Hannah, he's a great family man, and I think that's the part people don't see. They don't see the person that's there, because there's such a great soul in Charlie. He goes so much further than football.”
Tougher than any game on Notre Dame’s schedule, Hannah’s disability has taught the entire Weis family that they can grow through the pain. Maura says that Charlie Jr. has also become a better person because of Hannah. She says, “he's learned a lot from Hannah too I think. He my may not talk about it all the time, he may not want to talk about it all the time but the lessons are there for him and he's learned them.”
Maura’s advice is to fight for your child and face the challenge head on. She advises, “I think families, as I tried to write in the book, need to get together like a football team does and stick in it together, stay together as a group.”
Much like Notre Dame’s famed four horsemen, Maura, Charlie, Charlie Jr., and Hannah will ride together. While the mother-daughter dreams may not be typical, Maura feels blessed. She says, “she's mommy’s little girl. It's different, but it's great too, she just adores me.”
Hannah is currently in school and a very happy child and Maura's book is a great read for any parent.
Now Maura has a number of book signings coming up:
We also have a link to the charity the Weis's started in their daughters name--Hannah and Friends. The link is at the bottom of this article.