A typical, not-so-typical life.

A few years ago I would’ve said that I’m a mom to two, married, and do some part-time research work at [insert place of employment of the day here]. You know, living your typical, ordinary suburban life. Except, my life was anything but typical because my daughter was anything but ordinary.

Emily, my sassy, sweet, smart-as-a-whip, blonde, beautiful, blue-eyed girl, was diagnosed with a brain tumor when she was a baby. And for the next two decades, she underwent multiple rounds of chemotherapy, radiation therapy, and had several brain surgeries. She suffered side-effects from all of…

Hearing a diagnosis of cancer will forever alter your future. But what happens initially?

Shortly after my daughter, Emily, was diagnosed with a brain tumor, at just 7 months old, life became a whirlwind. This shouldn’t have been surprising. But, yet, it was.

Before; before I heard the words, “Your daughter has a brain tumor,” I was a caring, thoughtful individual. I was sympathetic to people who had a cancer diagnosis. But I never understood wholly what that diagnosis meant. I underestimated the seismic shift in the universe that occurs when you hear a diagnosis of cancer.

I had to wrap my head around the idea that my daughter, my sweet, innocent daughter, had…

I’m approaching that time of year: the one-year anniversary of my daughter’s death. What a strange way to refer to the date that my daughter stopped taking breaths here on Earth. Anniversary. Doesn’t that connotate a happy day to which you should celebrate? It doesn’t seem right to refer to the day, one year ago, that my daughter physically left us, as an anniversary.

We need to do better to discuss dying and the effect on those left still breathing. I don’t even have a term that describes me — a mother whose child has died. This is a significant…

How the seemingly weakest are the most heroic

She gets out of the cab with my help. Her aide already unbuckled her seatbelt. I grab her book bag, she swings her right leg, clunky with a hard plastic AFO on it, and her left leg swiftly follows. I’m distressed because her teacher had texted saying Emily was teary most of the day. This was after the text to let me know Emily complained of a stomach-ache and didn’t want to use the wheelchair during PE.

“Hi sweetie,” I say with a soft smile and concerned eyes, staring into her big…

The pain of filling that time between school years.

Summer break is fast approaching. A time when kids countdown to days filled with playdates, camps, sports, water fun, and anything BUT homework. A time when parents shell out money and figure out schedules and carpools to get the kids to said activities.

Unless you are the parent to a teen who has a cognitive or physical disability or chronic illness. Then you have to spend hours researching the ins and outs of these places to make sure they are an appropriate fit for your child. The research will whittle the…

The cost of getting healthy

We’ve all been there, right? You go to the doctor not quite knowing how much the appointment is going to cost because you didn’t pay attention to the finer details of your insurance policy. Is it a $20 copay? Wait, is this doctor a specialist? That might be $50. Ugh. No! This is a routine visit that should be fully covered. I think. Oh crap, I haven’t met my deductible yet; it’s going to cost $4,389,250.76.

Imagine having this conversation going on in your head several times a week — because that’s how often you go to a medical office…

Laughter doesn’t need to be sacrificed when life gets hard.

I love a good laugh and anybody who makes me laugh is my friend (whether they know it or not). But I don’t laugh easily — I can’t watch stupid comedy movies and laugh out loud — much to my husband’s annoyance. I appreciate more of a dry, British sense of humor (along with a bit of a dirty sense of humor thanks to my mother who is elegant and put-together but can laugh so hard at a dirty joke she pees her pants).

One of the main reasons I married my husband was because he made me laugh. We…

When “pandemic life” is the same as your everyday life.

Most of us can claim that our lives have been interrupted, at least slightly, by the global pandemic that’s been ravaging the world for the last year. Probably even more than slightly. And due to this pandemic, more and more people are openly discussing mental health issues that people experience when they are not able to move freely through the world, forced to stay home due to COVID-19 restrictions (as well as worry about a disease that doctors do not have much data or knowledge to fully understand).

At the same time, there are approximately 61 million adults with disabilities…

Spend Valentine’s Day practicing pure, effortless love.

I’ve always known love and didn’t think there was much more to learn about it. I grew up in a healthy, happy home with parents, brothers, and extended family members who have always loved me. I’ve loved them all, too.

I fell hard, deep, and fast for my husband when I was just 18 years old. That love is still there almost thirty years later.

And when I met my daughter, and six years later my son, I felt that overwhelming, stifling love that only seems to come from being a mother.

But what I learned about love, I learned…

Not an easy task when your teen has special needs

Like most kids, my daughter couldn’t wait for her birthday. She talked about it all year long. As soon as one birthday was over, she was on to planning the next one. Jealousy would creep up when someone else was having a birthday, “I wish it were my birthday!” she would playfully (yet truthfully) exclaim.

I’m probably to blame for her thinking that each birthday should be celebrated like the Queen’s Golden Jubilee. Em was diagnosed with a brain tumor when she was a baby and suffered many side effects from the numerous surgeries and treatments she endured, including a…

Amy Daniels

Writer, mom of two, one who had disabilities and complex medical issues due to a brain tumor. Memoir, Reaching For Normal, is available where books are sold.

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