Uncategorized Disorders

Visiting from college, I was having lunch with my mom and stepfather at one of the approximately 50,000 diners in the state of New Jersey. I was finishing up a delightfully soggy plate of disco fries — french fries smothered in brown gravy and mozzarella cheese. It served as my perfect almost-last meal. My mom [...]

After searching for answers for seven years, we finally a diagnosis. I truly appreciate what living as undiagnosed means for a family. However, I want to let people know that even when you get that diagnosis — especially an ultra rare one — it doesn’t stop there. We are one of only 41 families (that [...]

  Waking up and temporarily not being able to move your body is already scary. But a tweet challenging social media users to draw their “sleep paralysis demons” highlights another scary element of a sleep paralysis episode. On Feb. 6, Twitter user Rachel challenged followers to share their sleep paralysis drawings. Her own sleep paralysis [...]

I have spent years in doctor’s and therapist’s appointments. That is what being the mother of a child with a disability can be like. From all the time I have spent in these waiting rooms seeing kids with various disabilities and talking with their parents to pass the time, I can often pick out sensory [...]

My daughter was born April 24, 2015. I was able to hold her for a total of five minutes before the nurses scooped her out of my arms and took her to the small NICU they had. My husband and I had no idea what was going on. I was scared, worried, and downright exhausted. [...]

When our son was diagnosed with a rare genetic condition shortly after birth, the first question my husband and I asked was, “What do we do?” The answer will not surprise anyone who has dealt with a rare illness: wait. Baby Z was born with a large growth on his head, a small hole in [...]

Today, I saw an infectious diseases specialist. She was lovely, caring, and invested in my care, but in the end, this appointment was just another metaphorical box to tick off in my quest for a diagnosis. You see, I’m sick and have been for a long time according to this lovely doctor – sick since [...]

I encouraged my daughter to order all the items on the breakfast menu that sounded good. We were sitting on the end of an L-shaped bar at the local family restaurant, and soon the waitress brought strawberry waffles, potato pancakes, eggs with bacon, and biscuits with gravy. Our plan was for her to have one [...]

It’s that time of year: the time when we’re cooking, cleaning and entertaining more than usual. We’re traveling and shopping, all on top of everything else we tend to do every day without fail. It’s also when our days get shorter and our nights longer. And for some of us, that means our eyes are [...]

Our first son was born eight weeks premature. We were warned he might not cry and would immediately be taken to the NICU. The words “He is out” and a small cry were all I needed. With worried eyes, my husband said something was wrong with his lip — but I heard his cry. He was [...]