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

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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

Autism, Mom, Mom life, Parenting, Parenting Advice, PBS Kids, Ryan's ToyReview, Special needs parenting, Streaming Options for Kids, Technology, YouTube

Why We No Longer Allow YouTube in Our House: 10 Apps that are Better Options

We had an epic parenting fail last night. Over the past few years, we have been allowing our son to watch seemingly harmless videos on YouTube. A few years ago, he didn’t seem to watch anything more than people opening eggs, or a woman demonstrating how to play with toys. Initially, we were ok with… Read More Why We No Longer Allow YouTube in Our House: 10 Apps that are Better Options

Apraxia, Autism, Blogging, Mom, Mom life, Parenting, Special needs parenting

I'm an "Autism" Mom: 5 Things You Need to Know about My Journey

I’m about to talk about something that is going to probably upset people, and for that, I want to apologize ahead of time. This isn’t meant to cause ANY harm to anyone. However, there are a few things I want to clear up as I have been thrown into the world of becoming a parent… Read More I'm an "Autism" Mom: 5 Things You Need to Know about My Journey

Adrenal Insufficiency, Apraxia, Autism, Blogging, Breastfeeding, Ehlers Danlo's Syndrome, Grief, Medically Fragile, Mental Health, Mom, Mom life, Parenting, Post Traumatic Stress Disorder, Sensory Processing Disorder, social, Special needs parenting

A Letter to All my Online Friends Fighting To Save their Medically Fragile Children

Hi Friends, The past few years, I have had the pleasure or maybe displeasure (I mean who wants a child that is chronically ill), to meet so many of you on Facebook support groups. We have cried together, laughed together, and we have been to the darkest places together. No one else knows better the path… Read More A Letter to All my Online Friends Fighting To Save their Medically Fragile Children

Adrenal Insufficiency, Anxiety, Blogging, Grief, Medically Fragile, Mental Health, Mom, Mom life, Parenting, Post Traumatic Stress Disorder, Special needs parenting, Survivor

The Fear, Anxiety, and Panic of Parenting a Medically Complex Child

Chug-a-chug-a-chug-a-chug-a-chug-a-chug. I can hear the click of the wheels on the steel tracks, and the horn is starting to get louder and louder. The wind is picking up in my hair, and I can feel the speed I hold on for dear life to the seat on my side. Suddenly, there is a large crash,… Read More The Fear, Anxiety, and Panic of Parenting a Medically Complex Child

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"