Dear Special Needs Mama, I don’t know your name, but I know your heart.When I look at you, I see the bags under your eyes and the fear behind your smile.I hear the weight in your silence when someone asks, “How are you?” I’ve been there. Maybe you're still in the ER. Still waiting for… Continue reading Dear Special Needs Mama
Category: Parenting
Posts about parenting through real life, hard seasons, faith, family changes, special needs, adoption, emotional growth, discipline, connection, and learning to show up with love, wisdom, and grace.
The Day He Ran was Our Beach Miracle
I can still feel the sand under my feet and I can still remember The Day He Ran. Our Beach Miracle. The sun was setting, the breeze was just right, and we were finally on a family vacation, sort of, after what felt like a lifetime in hospitals. H sat on a blanket, watching the… Continue reading The Day He Ran was Our Beach Miracle
When the Siblings Are Watching
When your child is sick, your entire family gets pulled into the storm. What some people may forget is that there are other siblings in the home. This is about When the Siblings Are Watching – The Ripple Effect of Chronic Illness. In our home, the impact of Opsoclonus Myoclonus Syndrome didn’t stop with one… Continue reading When the Siblings Are Watching
Speaking the Language of Rare – Part 2
Speaking the Language of Rare – Part 2 In Part 1, I walked through some of the most common medical terms we’ve come to know and use daily. In Part 2, I want to continue unpacking those big words, especially the ones that pop up often in rare disease circles and our story. Acute Cerebellitis… Continue reading Speaking the Language of Rare – Part 2
Speaking the Language of Rare – Part 1
In Speaking the Language of Rare – Part 1, when you live with a rare diagnosis, medical terms start to feel like household words. In our world, terms like IVIG, ACTH, and Plasmapheresis are as common as “shower” or “cheese” or “cat.” Even the littlest kids around here know what they mean. But I still… Continue reading Speaking the Language of Rare – Part 1
A Father’s Faith
A Father’s Faith: Holding the Fort While My Son Fought to Walk Again In A Father’s Faith, this is something my husband has written documenting those early days of H's illness. We struggled for many weeks after H got sick. Between hospital stays, doctor visits, and treatments, we didn’t know if we were coming or… Continue reading A Father’s Faith
Welcome to Holland
Welcome to Holland is a poem that I have always loved. It is a different way to look at things when life does not go as planned. We have dealt with Dyslexia, learning disabilities, Fetal Alcohol Syndrome, Reactive Attachment Disorder, Sensorineural Hearing Loss, Generalized Epilepsy, Functional Neurological Disorder, and Opsoclonus Myoclonus Syndrome. WELCOME TO HOLLAND… Continue reading Welcome to Holland