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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Autism, Blogging, Faith, Grief, Medically Fragile, Mental Health, Mom, Parenting, Parenting Advice, personality, Special needs parenting

The One Choice Every Special Needs Parent Needs to Make

Every child with special needs has strengths and weaknesses. As parents, we are bombarded with evaluations that itemize our children into small brackets of development. We see on these charts exactly where they match up compared to their peers. Our therapists help us understand where they are and how far they still have to go.… Read More The One Choice Every Special Needs Parent Needs to Make

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"