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

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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

Blenderized Diet, Chronic Illness, feeding disorder, g-tube, Health, Medically Fragile, Mom, Parenting Advice, Real Food Blends, Tube Fed, Whole Food

How Real Food Blends and A Blenderized Diet Improved our Son’s Quality of Life

As a mother, one of the most maternal things we can do for our children is to feed them. There are a population of parents, like me, that have never been able to experience the joy of feeding their child by mouth. My experience of feeding my son was always plagued with difficulty, frustration, and… Read More How Real Food Blends and A Blenderized Diet Improved our Son’s Quality of Life

Apraxia, Blogging, Chronic Illness, Faith, Grief, Mom life, Parenting, Parenting Advice, Speech Therapy

Guest Blog: Denying Myself, Serving My Daughter

One of my favorite things to do is to read other blogs by mothers in the Special Needs Community. I connected with this mother while we were both contributing at the Mighty. She is a mother to Jaycee, a sweet young girl with Down Syndrome. Her blog covers speech therapy tips, Down Syndrome, Parenting, and… Read More Guest Blog: Denying Myself, Serving My Daughter

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

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