I actually wince when I catch someone staring at my youngest daughter, Willow. That’s because it hurts me. It physically hurts me. I imagine all the horrible things that person might be thinking while looking at my daughter and it causes my heart to break, hence the pain. I want to just yell back “It’s … More When It’s OK To Stare
“Sissy!” It’s the clearest word in Willow’s vocabulary. It’s also the word she says most frequently. I’m talking at least 50 to 60 times a day. I kid you not. Just ask the “kid” she’s calling for, Bella, aka, “Sissy.” To say these two are best friends is an understatement. Bella and Willow are soul … More The Story of 2 Sisters, an Extra Chromosome and an Extraordinary Bond
Music has always moved me. All kinds of it. In my younger years, I was at home in the mosh pits and lights of Lollapalooza. Around college, I fell in love with the haunting piano poetry poured out by George Winston. These days, I find myself jumping with Justin Timberlake one minute and twisting to … More He’s Already There
Two and a half years ago, a routine blood test led doctors to tell us that they thought our youngest daughter, Willow, had leukemia. They were wrong. Unfortunately, the celebration was short lived. Turns out, Willow’s wonky blood numbers were due to a rare blood disorder called Chronic Benign Neutropenia. For those unfamiliar, neutropenia is … More The Power of a Little Hope
It’s 3/21, a day to educate and celebrate! That’s because it’s World Down Syndrome Day! Why 3/21 you ask? That’s because Down syndrome occurs when someone receives 3 copies of the 21st chromosome, so March 21st, aka 3/21, makes it the perfect time to talk about Trisomy 21 (the fancy shmancy name for Ds). Because … More World Down Syndrome Day 2017
Knock! Knock! Who’s there? 40! 40, who? This isn’t a joke, people. I’m about to turn 40! Like, in a few weeks! Somebody pass the chocolate. The dark kind, because I hear that’s the best for your health. I guess I have to worry about that stuff now. When I was younger, I dreamed of … More The Pain of Growing Older
I don’t know how to feel. I am literally torn. Part of me is beaming with pride, another part of me is fuming with anger, another part of me is shaking with fear and then there is that part of me that is just plain exhausted. All because of a box of cereal. We keep … More The Mixed Emotions of Special Needs Parenting
When my daughter, Willow, was born we heard over and over again how weak she was because of her Down syndrome. Doctors and nurses used words like “fragile” and “frail.” Willow’s medical file was filled with even uglier words. “Failure to thrive” topped the list. Hypotonia, or low tone, quickly followed. Every word wreaked of weakness. … More What Doctors Didn’t Tell Me About My Daughter’s Down syndrome
I don’t know what to call it. Ironic? Nuts? Cray Cray? Or is that too 2016? It happened today. At church. I was talking to someone about why families who have children with special needs often stay away from church. Sadly, many have lost their faith. Others, just don’t feel like the church has a … More Stick A Fork In It 2017!
Most newborns go home with some goodies. Diapers, wipes, maybe some formula samples. Willow got them all. She also got a book. While the Pampers were for her, the book was intended for me and my husband. I guess you could call it a Down syndrome primer. I was told I really should read it. … More The Book I Wish They Would Have Given Me
