Adrenal Insufficiency, Blogging, chronic Illness, Ehlers Danlo's Syndrome, Medically Fragile, Parenting, Parenting Advice, Special needs parenting

The Emotions You Feel When Your Child has a Grim Prognosis

One of the hardest things you will ever hear as a parent is that your child has a life threatening disease. When you receive the diagnosis, there is this haze that comes over you. I remember the day my son was diagnosed with panhypopituitarism like it was yesterday, and it was weird because I remember… Read More The Emotions You Feel When Your Child has a Grim Prognosis

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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

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

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, 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, anti-vaccination, Blogging, Medically Fragile, Parenting, Special needs parenting, Vaccination

A Personal Account of How an Unvaccinated Child Altered the Course of my Son's Life

        Let’s talk about vaccines.  I haven’t written about vaccines ever because of all the controversy that surrounds this topic. Over the years, I have gotten into some heated debates with parents that chose not to vaccinate. I understand that everyone has a choice to vaccinate or not, and until there is… Read More A Personal Account of How an Unvaccinated Child Altered the Course of my Son's Life

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"