Author page: Le

faith

Remember those sitting in the darkness of Good Friday

On Easter Sunday, congregations around the world will come together to celebrate the resurrection. Families will gather and children will hunt for eggs in celebration of our risen King. The empty grave is certainly worth celebrating but I wonder if in our focus on Easter Sunday, we are too quick to forget about the darkness of Good Friday and the people who are sitting in it this weekend.

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Counseling, Epilepsy, parenting, PCDH19, Special Needs

7 tips for parenting special needs siblings

I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers.  He is here to spend a few hours with kids like him, boys and girls who have siblings with…

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Counseling, Epilepsy, PCDH19

Sick Days for the Soul

Most people still don’t understand that epilepsy can be fatal and is actually a leading cause of death. Families like mine are very aware of the statistics. We know that we could lose our children while they sleep and that every seizure could be their last. Madeleine’s death was still a devastating shock though. She was a vibrant 16-year-old with her life ahead of her and a family that adored her.

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Counseling, Special Needs

Coping with Stress

This morning I will be speaking at a conference for parents of kids with special needs about stress. It’s a hot topic these days. Americans are often described as the most stressed people in the world and parents of kids with special needs or from hard places are often especially overwhelmed. In fact, a study of moms raising children with…

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Epilepsy, PCDH19, Special Needs

In the shadow of the valley of SUDEP

Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.

I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.

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Advocacy, Special Needs

For special education students, accommodations may depend on your parents.

Children are being discriminated against and denied access to special education services they need to because their families are not equipped to fight for their rights. Schools have gone to such extreme lengths to add red tape and made it so difficult for parents to request services that many are not able to navigate the system. Those who speak English as a second language or have limited education themselves especially struggle.

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