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Maura Weis co-authored Miles from the Sidelines: A Mother's Journey with Her Special Needs Daughter (Sorin Books, 2008). This heartfelt book describes the emotional and spiritual journey the Weis family has experienced with Hannah (13), whose name means grace of God. Maura has been married to Charlie, the football coach for the University of Notre Dame in South Bend, Indiana, for 16 years, and also has a son Charlie, Jr. (15).

In 2003, they started Hannah and Friends (hannahandfriends.org) to give out grants of up to $500 to people with low to moderate income who have kids with special needs and need a special bike, or therapeutic horseback riding lessons or music therapy. A year ago they purchased 30 acres in South Bend to build 16 residential homes for adults with special needs.

MomSense Editor Mary Darr talked with Maura about the challenges and blessings of raising a special needs child. Editorial assistance was provided by MOPS Area Coordinator Peggy Brinkmann from Wisconsin.

Describe your daughter's developmental delays.

Although Hannah was diagnosed with autism when she was 2½ years old, that diagnosis never sat right with me. My maternal instinct told me that something wasn't right with Hannah, but it wasn't autism. I'd tell the physicians, "She's really not talking." And they'd say, "That's OK, but does she understand?" I wasn't sure what she understood. But I knew something was wrong with her diagnosis.

Ten years later we discovered Hannah has a rare seizure disorder called Landau Kleffner Syndrome, which starts around age 15 to 18 months. That's when Hannah's developmental complications emerged. We didn't see the seizures happening because they occurred at night. But they caused her mental retardation and developmental delays.

How is Hannah doing today?

She's 13, and the doctors told us her seizures will end in her mid-teens. But we did an EEG back in April, and found out she's seizure-free!

Every night when I put Hannah to bed, she asks me, "Are you happy?" She's so sweet! Other people have 13-year-old daughters with whom they're struggling with so many issues, and we have the sweetest teenager ever. Hannah is like a 4- or 5-year-old who has a limited vocabulary of about 50 words. She perceives much more than what she verbalizes. She's a smart girl, though, and knows how to get her point across. And she's very independent. You can sit with her for awhile, and when she's had enough of you being around, she'll escort you to the door and say, "See you later."

We take care of all her daily hygiene—we have to brush her teeth and bathe her. But she's really great about it; a lot of kids with special needs are not. I look at our life with Hannah as something God wants us to do. We love her no matter what—that's unconditional love.

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