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

When You Are Raising a Child that May Not Live to be an Adult

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 When You Are Raising a Child that May Not Live to be an Adult

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

Why It’s Hard to Be Positive as a Special Needs Parent

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 Why It’s Hard to Be Positive as a Special Needs Parent

Adrenal Insufficiency, Genetic Testing, 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

ADHD, Adrenal Insufficiency, Medically Fragile, Parenting, Parenting Advice, Special needs parenting

The 5 Reasons it’s Difficult to be Employed and Raise a Child with Special Needs

When I was a child, my goals were to be in the FBI, a lawyer, a famous writer, or a top executive of an organization. Never one time in my life did I tell anyone that I just wanted to be a mom or a wife. It just was not a part of my dreams… Read More The 5 Reasons it’s Difficult to be Employed and Raise a Child with Special Needs

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"