ADHD, Adrenal Insufficiency, Anxiety, Autism, Blogging, Ehlers Danlo's Syndrome, Medically Fragile, Mental Health, Mom, Parenting, Parenting Advice, Post Traumatic Stress Disorder, Rare Disease, Sensory Processing Disorder

The Truth of Parenting a Child With Special Needs We Don’t Share with Friends

I woke up this morning, and I felt tired. It wasn’t the tired where I couldn’t open my eyes or move my body, but this was an emotional exhaustion. My brain felt like it was zipping and zapping with no place to go and all the neurons were firing in the wrong places.  The exhaustion… Read More The Truth of Parenting a Child With Special Needs We Don’t Share with Friends

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Adrenal Insufficiency, Apraxia, Autism, Back to School, Medically Fragile, Mental Health, Mom, Parenting, Parenting Advice, Public School, Rare Disease, Sensory Processing Disorder, Special needs parenting

When There is No Place for Your Child with Special Needs in the Public Schools

Back to school is an exciting time for kids as they pick out school supplies, and get to shop for new clothes. Parents are excited to get their children back into a more structured environment, and the endless merry go round of trying to keep their child from boredom over the summer. Pictures start to… Read More When There is No Place for Your Child with Special Needs in the Public Schools

Medically Fragile, Mental Health, Mom, Mom life, Parenting, Rare Disease, Sensory Processing Disorder, Special needs parenting

Mothers of Children with Special Needs aren’t Always Strong

Mothers of children with special needs are praised for their strength, perseverance, and determination in raising their children. While it’s great being reminded that you are a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I… Read More Mothers of Children with Special Needs aren’t Always Strong

Adrenal Insufficiency, Genetic Testing, Harvard Medical School, Medically Fragile, Mom, Mom life, NIH, Rare Disease

A Desperate Plea to Help a Family Find Answers for a Medical Mystery

Three years ago I had the pleasure to meet a mom that was in my local community. Her daughter was just a few years older than my son, and our children shared a lot of very similar diagnosis. Our friendship over the years has blossomed despite the fact that we haven’t seen each other since… Read More A Desperate Plea to Help a Family Find Answers for a Medical Mystery

Adrenal Insufficiency, Anxiety, Autism, Medically Fragile, Mom life, Parenting, Parenting Advice, Rare Disease

To The Doctor that said "Your Child will Never be Einstein"

Dear Doctor, I am not sure if you remember me. I met you in the Pediatric Intensive Care Unit while my child was on life support. You weren’t my child’s primary care taker that week, you were just the doctor that happened to be on the floor the night we learned our diagnosis.  I remember… Read More To The Doctor that said "Your Child will Never be Einstein"