Today, we feature our guest blogger, Emily Johnstone, as she delves into how HOD changed motherhood and parenting.

The Many Roles We Play

We all have many roles in life—daughter or son, wife or husband, sister or brother, patient or caregiver, mother or father. For me, I am a wife, daughter, daughter-in-law, sister, and a patient. But above all, I am a mother.

When I first had my stroke and developed hypertrophic olivary degeneration (HOD), I struggled with Mother’s Day. I didn’t feel worthy of the celebration. But over time, I have come to embrace it, celebrating alongside other mums. In fact, we often have three generations together!

This is my story of how I coped with motherhood while living with a disability.

Different, Not Worse

I haven’t been able to parent in the way I originally imagined, but we have created a rich and loving family life.

From the start, we have been open with our thirteen year old daughter, Ella, about my disability and how our family does things differently. I had my stroke (and as a consequence HOD) the day after Ella’s 2nd birthday. She can’t remember me any other way. Her birthday has always been a bit bittersweet. On the one hand her excitement during the build up is contagious but there is always a dark cloud looming over the horizon. I try to separate the two and last year I succeeded! 

Because of my speech difficulties, conversation and eating together can be challenging, so we rarely sit around the table for meals like many of her friends do. Long walks aren’t easy, where I can, I go on my mobility scooter or we find other ways to spend time together—watching films, listening to audiobooks, and playing games.

I’ve learned that avoiding things that are unnecessarily difficult has helped us all accept that our life is different, but not worse.

The biggest lesson? Taking the pressure off and slowing down. It wasn’t easy for me at first, but it has become more natural over the years. It has also helped that Ella has grown older. That said, the relentless energy of a toddler and the pure joy of a child kept me going through the hardest times. Children have a way of providing much-needed respite from the intensity of rehabilitation. They live in the moment. At a time when it can be hard looking back to the past or too far forward into the future, children keep you in the present.

The Challenges of Parenting with a Disability

One of the hardest parts of early motherhood was not being able to pick Ella up or read to her in the way I had imagined. Instead, I would sit with her while my husband, Ian, read to her. I learned to be present in moments even when I couldn’t “do” the things I wanted to.

It was also important to us that Ella remained a child—not a carer. A therapist once told Ian that this distinction was crucial, and we worked hard to maintain it.

Finding Our Own Routines

I found ways to create special moments with Ella that didn’t rely on my husband 

• Playgroup with friends and family – This was something we did together, without needing my husband’s help.
• School pick-ups and ballet class – With the help of my personal assistant, once a week, I was able to pick Ella up from school and take her to ballet. I sometimes used to go to school on my mobility scooter with a boogie board attached on the back which Ella would stand on, waving at her friends as we wizzed passed.  
• Dedicated time together – Having support from my personal assistant meant that my time with Ella wasn’t always shared with other family members or friends. It was just our time.

•  Letters to Ella – When my speech was particularly hard to understand, I started writing letters to Ella so she could hear “my voice.” I would write about her week and connect it to my own childhood memories. Since Ella was young, Ian would read the letters to her. Not only did this allow her to hear my voice, but it also gave her a window into my past. Now, those letters are treasured by us all.
• Sitting on my knee with me in my wheelchair – One of my favourite things was when Ella would sit on my knee while we went for an out together. She would snuggle into me. I did feel, however, for the person pushing!

Looking Ahead

Everything will change as we embrace the teenage years, but one thing remains constant: I am Ella’s mother. Our life may look different from others, but it is filled with love, joy, and connection. And that’s what truly matters