Do you have those classic questions that people have been asking you over and over again since your unique parenting journey began? You know the ones I mean. That same thing or two you've heard people inquire year after year after year? I know that I have heard one relentless question since the day my son was first diagnosed with Hemophilia A - Severe 18 years ago — "Will he ever get … [Read more...]
6 Ways Sharing Empowers Parents
April 17, 2018, is World Hemophilia Hemophilia Day. Before you tune out because you don't have a loved one affected by my son's rare bleeding disorder, listen to this year's theme — "Sharing Knowledge Makes Us Stronger." That's a theme I find to have relevance far beyond the hemophilia community. In fact, I would say that the theme of strength in sharing is extremely apropos for every parent … [Read more...]
Five Phrases Special-Needs Parents May Never Hear
August is Special Needs Parents Appreciation Month. My friend and fellow dedicated mother, Sandra Peoples, founded this 31 day observance in 2015. And while her intentions were noble, there are sadly some in the adult disability community who roll their eyes at this annual observance. They regard such a celebration as public martyrdom and contend that the parents aren't the ones who are truly … [Read more...]
When Your Holidays Don’t Turn Out As Expected
You followed all of the advice. With tenderness and care, you purchased all of the tagless clothes and made the sensory-friendly accommodations. You examined all of the lists for the best Christmas toys for children with special needs. And you made dietary choices that would best suit your child's restrictions. STILL your holidays aren't as you expected. Relatives Anyone who has taken even a … [Read more...]
When Your Church Doesn’t Miss You
It all began with a rush to the emergency room after school. I called friends from the car asking them to notify our church. I prayed that my triage at home was incorrect, that I was just being overly concerned. Unfortunately, testing revealed that my worries were well-founded. My son was having a life-threatening internal bleed in his hip area. He was hospitalized while a plan was formulated for … [Read more...]
Are You “Ghosting” Your Child?
"Mom! Mommy! Mama! MAAAAA!" On top of that, it does something terrible to my child. It shouts right back, “You AREN’T important to me.” I am telling my child that her needs aren’t a priority. Her concerns are insignificant. I don’t care. Epiphany My eldest child, now in college, unwittingly brought this to my attention recently. She described what she is learning in one of her communications … [Read more...]