Managing my Mental Health, Parenting, Rare Disease, Special needs parenting

There is No Normal When you Are Raising a Zebra

The room was a bright white. The kind of white that is stark, bare and void of any personality. Above us was a square that worked as a track for a large camera that moved around the room. In front of us was a bed that was as white as the room, with white tissue… Read More There is No Normal When you Are Raising a Zebra

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Chronic Illness, Gastroparesis, Grief, Mental Health, Parenting, Raising my Chronically Ill Son, Rare Disease, Special needs parenting

When Grief Makes You Feel Like You Are Drowning

Just keep swimming. Just keep swimming. Just Keep swimming Those words run through my head every day as I care for my medically complex child. Over the past five years, I have learned to tread water, swim laps, and sometimes I stop swimming. There are some periods when I can’t physically move, and I feel… Read More When Grief Makes You Feel Like You Are Drowning

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

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

ADHD, Crime, Medically Fragile, Parenting, Raising my Chronically Ill Son, Rare Disease, Special needs parenting

Why My Medically Fragile Son’s Future Terrifies Me

A funny thing happened today as I was being interviewed for this blog. I was sitting down Pediatric Home Services to discuss my advocacy and mission in sharing content on this page. It was a candid conversation about how the blog was born, my journey as a special needs mom, and my thoughts for the… Read More Why My Medically Fragile Son’s Future Terrifies Me

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

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

Autism, Back to School, Medically Fragile, Parenting, Public School, Rare Disease, Sensory Processing Disorder

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

Medically Fragile, Mental Health, Mom, Mom life, Parenting, Rare Disease, Sensory Processing Disorder, Special needs parenting

Mothers of Children with Special Needs aren’t Always Strong

Mothers of children with special needs are praised for their strength, perseverance, and determination in raising their children. While it’s great being reminded that you are a good parent, there is something inherently uncomfortable when you are told you are strong for raising your child that has special needs. When people share these sentiments, I… Read More Mothers of Children with Special Needs aren’t Always Strong