Adrenal Insufficiency, Chronic Illness, Educational Info, Faith, Heart Disease, Medically Fragile, Parenting, Raising my Chronically Ill Son, Rare Disease, Special needs parenting

For Many Children Birthdays are Another Year of Beating Death

Most parents get excited for their child to celebrate another year, a day of their birth, and a successful completion of another trip around the sun. Parties are planned, invitations designed, decorations picked out to match a theme, cakes ordered or baked, and food prepared to celebrate the special day. Images of the day will… Read More For Many Children Birthdays are Another Year of Beating Death

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ADHD, Adrenal Insufficiency, Anxiety, Blogging, Disability Advocacy, g-tube, Genetic Testing, Grief, Mom, Mom life, Parenting, Parenting Advice, Rare Disease, Special needs parenting

3 Ways to Make Friends as a Mom with a Special Needs Child

By: Michael Monheit, Esq For many mothers of a special needs child, tending their own personal friendships hovers somewhere at the bottom of the “to do” list, falling underneath occupational therapy for their child, doctors visits, and the simple tasks of everyday living. At the same time, as a sometimes tired and overwhelmed mother, your… Read More 3 Ways to Make Friends as a Mom with a Special Needs Child

Adrenal Insufficiency, Autism, Disability Advocacy, feeding disorder, g-tube, Health, Medically Fragile, Parenting Advice, Rare Disease

When Your Child with Special Needs is Gawked at by Strangers

When you are a mother, you are never on time for any event. There are so many things any parent needs to remember for their child. Do they have extra clothes, snacks, sippy cups, toys, or their favorite stuffed animal? Now imagine you have a child that has special needs and has more than just… Read More When Your Child with Special Needs is Gawked at by Strangers

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

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, 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

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

How Not Vaccinating Your Child Can Effect Medically Fragile Children

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 a law that mandates… Read More How Not Vaccinating Your Child Can Effect Medically Fragile Children

Adrenal Insufficiency, Disability Advocacy, g-tube, Grief, Medically Fragile, Parenting Advice, Special needs parenting

Why I’m a Helicopter Parent

Five years ago I had found out I was pregnant, and I was scared but so excited for the future. I remember gazing at the first ultrasound picture of my baby. We called the baby “nugget” because in the photos it looked just like a peanut. Now 5 years later, I have a 4.5-year-old son,… Read More Why I’m a Helicopter Parent