Anticipatory Grief: Sibling Perspective

Community Submission by: Ameera Rey One minute you are laying in bed. Eyes closed. Trying to go to sleep. Then you have an out-of-body experience. You are in the hospital. A doctor has just walked in and told you the person you love so much is dead. You are sobbing. So extremely angry. Angry you couldn’t save him. Angry you couldn’t protect him. Angry his body was riddled with a disease that stole his life. You’re so angry that you

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A Day in the Life of a Special Needs Mom: Pandemic Edition

Community Submission by: Anonymous It’s 8:00 a.m. and I am awakened by the sound of J, my youngest son, kicking the wall next to his bed. I am so very tired. I feel like my actual soul is exhausted.  I unzip J from his special bed, which keeps him safe at night. His whole room smells like pee. I sniff his sheets. Despite the fact that I washed the bedding days ago, it all needs to be washed again. J, age

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To All The Mothers I Have Been Before

Community Submission by: EllieEllie is a lawyer living in Baltimore with her husband Mark. They are parents to six year old Molly and two year old Lila, who has Lamb-Shaffer Syndrome. To follow her story, sign up for Ellie’s newsletter. To the mother of the two year old, worrying about whether to have a second baby… I see you.  I see how worried you are, about having a second kid and what if that child isn’t healthy?  What if they

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Mile Markers: A Rett Syndrome Diagnosis Story

Community Submission by: Leslie Mehta Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name. I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were

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A Tourette’s Diagnosis

Community Submission by: Kelda York Kelda York is married with three children and lives in NH. She is a pre-school teacher, an avid cook, and enjoys a good novel. My son has always kept us on our toes, even before he was born. There were concerns over a heart arrhythmia, which was detected at 16 weeks of gestation. He decided to join us 6 weeks early and spent weeks in the NICU to fix some lung development issues (his heart

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I Love My Son – But I Don’t Like Him

Community Submission by: Anonymous I recently watched the movie “Lady Bird.” If you haven’t seen it, it’s the story of the relationship between a rebellious teen and her mother.  I wouldn’t have normally resonated with this type of plot, but recently, my 11-year son and his hormones have been ruining my life (hormones + autism = horrible combination). So when the mother, played expertly by Laurie Metcalf, basically kicked her daughter out of the house, I was cheering from afar! 

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What I Learned the Day My Son Eloped

Community Submission by: Avis Avis is the mother of three boys: the older two are typically-developed, and her youngest, Bennett, has Phelan-McDermid Syndrome with autism. She is also a wife and a dentist. On June 16th, 2020, my 6-year-old son Bennett ran out of the house and jumped the fence. By the time we realized he wasn’t hiding or avoiding us, we could NOT find him. We live on a corner and we weren’t sure which direction he ran. We

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