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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Medically Fragile, Mom, Parenting Advice, Special needs parenting

When You are Trapped By Grief, Hope for the Mom of a Medically Fragile Child

Raising a child that is medically fragile can be an emotional rollercoaster. You will have days that are amazing and filled with big wins for your child. There will be other days where things will fall apart, your child‘s health will deteriorate, or you will be hit in the heart with a devastating diagnosis. How… Read More When You are Trapped By Grief, Hope for the Mom of a Medically Fragile Child

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

ADHD, Autism, Educational Info, Parenting, Parenting Advice, Special needs parenting, Speech Therapy

3 Ways You Know it’s Time for Your Child to Leave Therapy

Do you ever feel like your entire life is spent in the car driving to an appointment? Then the next half of your day is spent in a waiting room while a litany of therapists sees your child? I will enthusiastically raise my hand high! Since my son has been two years old, we have… Read More 3 Ways You Know it’s Time for Your Child to Leave Therapy

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

Autism, feeding disorder, Grief, Guest Blogger, Parenting, Special needs parenting

How I Learned to Embrace My Role as a Special Needs Mom

By: Stephanie Reitenour Five years ago, I was a kindergarten teacher in Colorado enjoying mountain life with my husband, Nick. We were incredibly involved in our church, our community, and the schools. My life was busy and full, and I loved life. I had a job that I liked, and I felt confident that I… Read More How I Learned to Embrace My Role as a Special Needs Mom

ADHD, Managing my Mental Health, Mom, Mom life, Parenting, Special needs parenting

The Struggle of Raising a Special Needs Child When You Have ADHD

“I can’t find my keys!” “Crap, did I give him his medicine?” “Why did I come downstairs again?” “Did I call the doctor? When is his appointment again?” “I really need to start writing all of this down!” “Did I brush his teeth? When was the last time his diaper was changed?” “Why can’t I… Read More The Struggle of Raising a Special Needs Child When You Have ADHD