Causes and effects: a letter to my child’s rare disease

Dear Harlequin Ichthyosis, Yes, I’m talking to you today. You, whose name I couldn’t pronounce for days after hearing it for the first time. You, who appeared unexpectedly on a December afternoon 3 years ago, causing panic and fear on what should have been a joyous day ....more

VeggieTales Noah’s Ark giveaway!

We’ve been a huge fan of the VeggieTales series since Connor was a baby – we just love the messages of the stories, and the cartoons are really cute and engaging. The newest VeggieTales movie is being released on March 3, and it’s a story we all know and love – Noah’s Ark! This arrived in our mail on Monday, and both kids immediately clamored to watch it while I was getting dinner ready ....more

Dashing through the snow

Mother Nature tossed nearly a foot of snow at us in Illinois this past weekend – a bright white thickness that just begged for sledding and boot prints and snowmen. The stars aligned just so to give us a big snowfall without temperatures that take your breath away… so for the first time, we bundled up this little girl for her first snow experience. She was thrilled to be outside with the rest of the neighborhood, but was more observational than anything else… ...more

Facial empathy

A couple of weeks ago, Evan realized one evening that he was having trouble closing his eye and his tongue felt strange. By morning, he quickly lost all feeling on the right side of his face, and after a trip to Prompt Care and a morning spent in the ER to ensure he wasn’t having a stroke, he was diagnosed with Bell’s Palsy. Bell’s Palsy, caused by a virus, completely paralyzed the right side of his face for about 2 weeks ....more

That Time a Stranger Made Us Dinner…And Didn’t Stop

The web site The Mighty posed a question this week, in honor of Valentine’s Day: “Can you tell us about a time when a stranger showed you love?” I have so many… too many to tell. After Brenna’s birth, hundreds of strangers reached out to our family in some way or another. Kids who went sold lemonade to raise money for Brenna, or collected medical supplies for her at their birthday parties ....more

Where we’ve been, where we are

I think for many people, when you’re in the throes of a period of devastation in your life – from a diagnosis or death to a child in the hospital to a house fire or even a job loss – there is a flood of emotions that your head often keeps at bay in order...more

Children’s Books about Disability

I’m always on the look-out for great children’s books, and especially those with a story that celebrate uniqueness and difference. Last year I compiled a list of some of our favorite children’s books about being difference and being yourself. But I realized that although beautiful stories about uniqueness and even visual difference, none of the ones we had read specifically addressed any type of actual physical or mental disability ....more

Friday Favorites: February 6

“I’m scooping your ears!” Brenna declared to her daddy, as she grabbed a screwdriver from the play toolset. It’s funny to see kids mimicking their parents, and it’s especially amusing when it’s something so specific to her unique skin care, such as scooping excess skin out of her ear canal ...more

To Special Needs Dads: You Are Appreciated

“These articles are really nice, and very true,” my husband said to me one evening as he clicked a link to yet another blog post about how strong and awesome special needs moms are. “But what about the dads?” What about the dads? A quick Google search shows several blog posts written about special needs dads… the same several posted again and again on different sites – contrary to the hundreds ...more