The Good and Hard Days

by: Annie Crane

6:30am – Beep. Beep. Beep. I roll over in bed and try to focus on hitting the stop button on my phone. I lay on my back and struggle to keep my eyes open. Immediately, I run through a mental checklist of all the therapy appointments and items on my to-do list for today. I pick up my phone to scroll through Facebook. Mindless scrolling. My mind drifts between some of the good days and hard days of motherhood.

Meet Annie, Matthew, & Nora

Annie, mother, with her children, Matthew and Nora

My name is Annie and I’m the mother of two amazing children with disabilities. My days as a mom are spent watching therapies, going to doctor appointments, researching, scheduling medical appointments, and looking up other therapies, medications, or new interventions for my kids. Oh, and I provide daily care for my daughter.

Matthew proudly wearing his Honda Shirt

Both of my kids have Autism. My son, Matthew, is seven years old and is in 1st grade. He LOVES Hot Wheels and basically anything that has to do with cars and transportation. He has been able to identify every car in a parking lot (Honda, Toyota, etc) since he was two and half years old. He is incredibly smart and hilarious. Most would consider him high functioning or in the old terminology, Asperger’s. He struggles with changes in his routine, processing his emotions, and recognizing and implementing social cues/skills. He was diagnosed when he was 4 years old, long after our daughter, Nora, received her initial diagnosis.

Nora wearing her favorite Disney character, Minnie Mouse

My daughter, Nora, is four and a half years old. She loves Minnie Mouse, her brother, giggling when someone sneezes or trips, and swinging in her swing. Her smile will brighten anyone’s day and her laugh is infectious. In addition to Autism, Nora has Agenesis of the Corpus Collosum (ACC), which means that she is missing the part of the brain that sends information between the right and left hemispheres.

Visual explaining corpus callosum

To understand ACC, think of a circle. Imagine that you want to get to the top of the circle the fastest way possible from the bottom. Your first thought would be to go straight up the middle. For Nora, she would have to go all the way around the outside of the circle to get to the top. This is how Nora’s brain works. Information takes longer for Nora to process because the connection between her brain’s halves, her direct route is missing. She was born without it, though we didn’t find out until she was 10 months old.

Nora has a longer list of other diagnoses, including global developmental delay and microcephaly. Nora cannot walk independently yet and is nonverbal.

The moment I became a mother of a child with disabilities

I remember the moment I got the call about Nora’s diagnosis very clearly. Looking back now, it was a moment that changed my life and ultimately how I was going to parent in the future. In the moment, I was full of confusion, high emotion, and guilt. I don’t think I registered how much I would change and our lives would change after this phone call.

Dave, father, with newborn Nora and big brother, Matthew.

Nora had just had an MRI. The neurologist said he was checking for something called microcephaly.  At the time, I remember googling it and seeing phrases like “small head” and “developmental delay.” At the time, I remember not being very concerned and believing that her physical therapy would resolve it. I can confidently say, I was very naive about the situation, but most importantly, I was in denial that something serious was happening.

When the tech called with the results, he began saying all of these large medical terms that I did not understand. “enlarged ventricles.” “Agenesis of the Corpus Callosum.” “copolcephaly.” I asked if they could spell all of these words for me. I pride myself on earning a master’s degree, but these words were foreign to me. I wrote each word on a scrap piece of paper. I asked what some of these words meant. I remember getting answers like “missing part of the brain, extra space in the back of the head.” He said the doctor also confirmed microcephaly. He told me the neurologist would follow up with us at our next appointment, almost 2 months later. Never did I expect to hear that my child was missing a piece of her brain.

Immediately, I started googling some of these words in hopes of a better idea of what the MRI results indicated. We all know Dr. Google is the best way to get medical information. (Insert sarcasm.) But, in this case, I did learn what these words meant, but not the ramifications of how that would affect our lives moving forward. I collapsed to the floor, allowing the tears to fall.

The Hard Days

Nothing really prepares you for motherhood, but everyone has some idea of the basics. I spent the first two and half years of motherhood, thinking my life was going one way. I had it all planned out. My husband and I had all these goals and dreams.

After that phone call and in the months that followed, my role as a mother became a lot more complicated. My emotions went through all stages of grief. I learned how to be a therapist, scheduler, researcher, medical expert on Nora’s diagnosis, observer, and most importantly, an advocate.

My husband and I grieved the life we thought we were going to have with our children. Honestly, we still have days where we still have moments of sadness. Those are usually on the hard days when one or both kids have had multiple meltdowns and everyone ends up crying.

When I think of hard days in our house, I think about when Matthew has several meltdowns in one day. A meltdown may begin over a waffle, but really is about a change in his schedule. A meltdown can start with harsh words and can escalate quickly to throwing a plate across the room. My goal is to remain calm and get Matthew to “take a break” to calm down. While this is happening, Nora usually begins to cry or head banging because there is yelling or crying. In these moments, I struggle to keep everyone safe and make the right choices. There are days when this situation is on repeat and I feel resentment. These are the low moments of special needs parenting.

The Good Days

Since learning my children have disabilities, there are so many things about my life that have changed for the positive. I’ve become a better advocate for myself and for my children. I’ve learned I have to be bold, ask questions, and most importantly, ask for help. I’ve met so many amazing, strong parents, therapists, teachers, and administrators who really care about Matthew and Nora. The amount of gratitude I have for these people is unmeasured. I could not be the mother I am without their support.

Nora and Matthew bring so much joy to our lives. Every small milestone is big in our house. There were big cheers and tears when Nora brought scissors to the paper during occupational therapy. It took a year of hard work for her to do it on her own. We also celebrated when Matthew started using his scissors correctly to cut simple shapes.

When there is a really big milestone, it makes all the hard days worth it. A month ago, Nora and I were at Nationwide Children’s Hospital for her bi-weekly physical therapy appointment. Nora’s been working on taking independent steps between small distances like the couch to a chair. Up until this day, Nora was consistently doing 4-5 steps independently between people. Her steps had started to look more sturdy and she looked more confident.

Nora, wearing her princess costume and beanie from The Beanie Project.

We had moved to the large gym area.  Her therapist had Nora in an independent stand position. She saw another child across the room. She must have got excited because she started to take steps independently across the room. She would pause, gain her balance, then continue again. I watched my child confidently take 20 independent steps across the room in that moment.

When she plopped to the ground, I had tears in my eyes while her therapist and I cheered. Nora looked pretty proud of herself too.

I smile when I remember this particular day. It felt like one of the biggest dreams I’ve had since Nora’s diagnosis, that she would walk, seemed inevitable. I know she will get there. As I say, she does things in Nora time, when she wants to.

People have told me over the years that I’m super mom and they don’t see how I do all that I’m doing. I am just surviving day-by-day and doing what any mother would do, regardless of ability. I’m just trying to set my children up for the best possible future. It just looks a little different for us. It isn’t your normal, but it is our normal.

6:50am: Twenty minutes have passed. I hear Matthew get up, go to the bathroom, and head to the basement to play Hot Wheels before school. I guess it is time to get up and get into the shower before Nora wakes up. It is the only time to myself before the craziness of the day begins.

Step back, relax, reset and destress with our Mindful Wellness Relaxation Kit from Easterseals. 86.3% of each purchase helps to offset what the COVID-19 Pandemic has cost our programs that serve people with developmental disabilities. Click this link to learn more: https://bit.ly/destresswitheasterseals

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