An Old Man, A Mutt, and a Funeral: Taming the Wake of Voices in My Head

Ahead of schedule, I smugly buckled my youngest child . The dog jumped in behind. It was time for a physical for the four-legged member of our family. Heart worm, flea and tick season were on their way. After the appointment, I’d sweep by school to pick up my daughter, who was at the Humane Society volunteering and whisk her off to her ball game. If all went well, everyone would get to their destination — right on time (or even before)....more

Who Makes it Special?

Long ago, in a land not so far away, I picked up the label "special." Not me, no, the label was for my special needs child. This is what we call it now. Retarded, held back, different, slow, freak - we're moving past those awful stereotypes; those terrible words. Now, we're special, and when things are special, life changes. There is no going back.Divorce and single parenting strikes many families when a special needs child is born. When I thought the one closest to me would help me, rally around me, I found myself alone to parent two children....more

Down Syndrome and Alzheimer's

I ran across this article about the connection between white matter and cognitive health. But what really fascinated me was the part about how people with Down syndrome are at "extremely high risk" for developing Alzheimer's after 40.The researchers did a study using 3 groups:1. people with Down syndrome but no dementia2. people with Down syndrome and dementia3. a healthy control groupThey used MRIs to study the brains of all three gouprs and found that:...more

Book Review: Raising Henry: A Memoir of Motherhood, Disability, and Discovery

Memoir writing may be the most difficult sort of writing there is, because to craft a story from lived experience takes a certain kind of ruthlessness: the willingness to reveal your most difficult moments and deepest flaws with unflinching honesty—without crossing the line into “oh poor me.” It’s a tricky balancing act, I think, and one that very few writers do well—Mary Karr’s The Liars’ Club, Jeanette Wall’s The Glass Castle, Cheryl Strayed’s Wild come to mind—and to that list I’d now add Rachel Adams’ wonderful new book Raising Henry, a powerful account about her son Henry, who was born with Down Syndrome. When Henry was born, Adam’s life was clicking along according to plan: she was a tenured literature professor at Columbia University with a wonderful lawyer husband, and a beautiful son named Noah. Sure, they worried about juggling the schedules of a two-career couple, about finding a good school for Noah, all the standard-issue worries—but for the most part, life seemed to be moving forward right on schedule. And then Henry was born. Adams chose not to have the prenatal tests that could have predicted Down Syndrome and one of the (many) powerful moments in the book occur when she points out that when people ask her why she didn’t have those tests, what they are really asking is  “how a well-educated, successful, ambitious woman like me came to have a child with Down syndrome.”...more

Amnio & CVS, Why You Might Consider These

Many couples wrestle with the overwhelming amount of decisions in pregnancy. Should they have genetic testing and if so, what kinds. Should they have ultrasounds, Amnio or CVS, new NIPT....more

She Whispered in the Dark, "Thank You for Growing Me"

I have this phrase I’ve been saying to the kids for years: "I worked so hard to grow you!" The unsaid followup -- of course -- carrying with it more meaning than what is actually spoken. That is, since I worked so hard to grow you, the least you could do in return is this one teensy weensy thing. I say it when Torri groans about emptying the dishwasher or when Kennedy would rather slip off to bed than give her old mom a hug. I say it when Cassidy refuses to sit still so that I can brush her hair or when Jayce gives his daddy the prized first morning hug instead of saving it for me. It’s always said in jest, meant more as a playful tease than a means by which to elicit actual feelings of guilt....more
Love this. When my son says something like this, it absolutely melts me.  I know without a ...more

Abortion and Down Syndrome

First of all, let’s get one thing straight: I am not in the business of judging women for when and why they choose to abort. If you’re only going to take one thing away from my blog ever, please let it be that.Now that we’ve got that out of the way, I have something that I want to talk about.I want to talk about the fact that, according to some studies, an estimated 90% of fetuses that receive a prenatal diagnosis of Down Syndrome are aborted....more

Alex you ARE a super hero!

In the last two years we have done some future planning with Alex. We have used the PATH process to help Alex articulate her dreams for her future and the steps needed to make these dreams positive and possible. ...more

R-Word: Spread the Word to the End the Word

While generally features posts with a humorous angle, I occasionally write posts which fall under the category “No Laughing Matter”. ...more