I am the primary caregiver to my seven-year-old daughter, JJ, who has Rett Syndrome. I have watched Rett take away her independent steps, hand use, words, and much of her swallowing ability. Recently, it has even begun to curve her little spine. At first, when her losses were coming fast and furious, I only felt the negatives—the anger, grief, unending terror, and bottomless heartache. It has taken many years, but happiness, contentment—even flashes of joy—have now reentered

For medical parents, the contrast between advice and support—two very distinct means of communication—can be stark. We often receive...

I don’t think anyone needs me to list all the reasons why disability/medical parenting is stressful. Suffice it to say that they can run the gamut—from juggling pharmacy refills to witnessing our child’s near-death experiences. However you look at it, this type of parenting can take an enormous toll on us, greatly affecting not only our minds, but also our bodies. This is certainly the case for me. Stress manifests as a tightness in my chest, rapid breathing, and/or a poundin

In the world of medical and disability parenting, sources of trauma abound. There are, of course, the terrible things that can happen to...

If, like me, you are one of the forty million Americans who experience anxiety, you know what it feels like to truly worry. I’m talking...

Something went wrong in the middle of spring. With little provocation, I began snapping at my loved ones. My body started dragging and my...

Mental energy. Cognitive load. Emotional bandwidth. Whatever we call it, we all have a certain amount we expend each day. And when that...

When it comes to special needs families, the topic of sympathy can involve a surprisingly diverse range of emotions and elicit a wide...

I am a writer whose subject matter sometimes horrifies people. Yet, there are no guts, weapons, or gore in my essays and stories. My...

Many special needs parents battle unspeakable things under unimaginable amounts of pressure. It’s no wonder we sometimes suffer from...

When JJ received her Rett Syndrome diagnosis, I asked the therapist I was seeing what to expect in terms of grief. I wanted to have an...