Chronic Illness, Disability Advocacy, Ehlers Danlo's Syndrome, Guest Blogger, Parenting, Rare Disease, Special needs parenting

The Day I Found out Most of My Family Was Chronically Ill

March 31, 2016, is the day my life changed. March 31, 2016, is the day that Davy’s geneticist listened to me as I explained the research I’d done that led me to believe that both he and I had EDS and the day that she informally diagnosed us both.  I cried tears of joy in… Read More The Day I Found out Most of My Family Was Chronically Ill

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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, 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, Breastfeeding, Chronic Illness, Ehlers Danlo's Syndrome, feeding disorder, g-tube, Genetic Testing, Medically Fragile, Mom, Mom life, Parenting, Parenting Advice, Sensory Processing Disorder

The Sisterhood of Mother’s of Medically Fragile Children

We are a sisterhood that we never imagined being a part of and never wanted to be in this group. We are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are stuck at home, unable to hang out due to the demands of our children’s… Read More The Sisterhood of Mother’s of Medically Fragile Children