A typical, not-so-typical life.

Me and My Girl, Image by Amy Daniels

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…

The pain of filling that time between school years.

Emily, photo by Amy Daniels

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

Emily, Image by Amy Daniels

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.

Photo by Author

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.

Image: Amy Daniels

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.

One of Emily’s numerous love notes that she scattered around the house. (image by author)

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

Emily enjoying another birthday party at her high school. Photo by author (Amy Daniels)

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…

Being a caregiver for your loved one who is hospitalized during a pandemic adds a level of difficulty and stress that might not have been there during other times.

During non-pandemic times when therapy dogs were allowed to brighten hospital stays.

My daughter had been in and out of hospitals her entire life as she battled a brain tumor. And if she had to stay overnight at the hospital, I stayed overnight right alongside with her. I knew the ins and outs of hospital stays. I knew what to pack, what instructions to leave at home, and I knew what to expect. While my daughter was a pro at enduring hospital admissions (chronically ill kids are of the toughest breeds), I was a pro at navigating the world of caregiving at the hospital.

My professional status, however, got turned upside down…

The season feels longer and longer with each passing year

Emily, thoroughly enjoying a Christmas gift

I grew up in New England with a tradition of putting up a real tree for Christmas a few weeks into December. Then, for two weeks I eagerly awaited Santa’s arrival on Christmas morning. The first half of my “adulting years” was spent in Colorado where my husband worried the arid environment wasn’t conducive to a live tree. Instead, we got a fake tree that we put up the first week in December, signaling three weeks until the big day. …

As seen from the Parent of a Child with Special Needs

Words of Wisdom written by Emily

I often wonder if others look at us from a distance and instantly feel grateful for what they have, not having to be in our shoes.

But I also wonder if they know what we have.

We have seen positivity in a child we did not know existed in even the happiest person.

We have witnessed strength when anyone else would crack.

We have seen joy in the truest, purest forms.

I have learned that I have much to be grateful for since becoming the parent of a child who has special needs.

I am grateful for seeing a smile…

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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