Color & Control:

What is normality?

Two young brothers hugging each other

By Rebecca Highton

Before having my twins, Rory and Alfie, I imagined what it would be like to be a mom and what it would be like to raise my children to live strong and independent lives. Yet that is not the reality we face. For Zak and I, days are full of complexity and worries, and most notably, living in a constant state of stress.

We worry about whether Alfie is okay. Are his ears (cochlear implants) working, does he have an ear infection, has he had his medication, does his chest sound healthy, is his nystagmus (eye shaking) worsening, has he eaten enough? Each day is full of these questions and so many more.

Normality for us is:
1. My blood pressure constantly above average.
2. My phone always on in case any of Alfie’s medical professionals need to get in touch.
3. Zak facing the brunt of my mood swings as I try to deal with the stresses of each day whilst also training to be a solicitor.

Normality for us is not everyone’s normal day to day life.  Each day that I drop Rory and Alfie off at nursery it takes far longer than it should. I need to ensure the nursery staff are fully updated on how Alfie is doing, informed of any changes he may have had to his medication/routine and what appointments he may have that day.

School and phone calls
At pick up, it is a full breakdown of how Alfie has been. How was his mood, how well has he eaten (his usual refusal of fruit), how well he did in one-to-one time, whether he slept, and how well he took his medication? Other parents are there for 15 minutes. It regularly takes over 45 minutes for us to learn about all aspects of Alfie’s day. My workday day is constantly being interrupted by my phone going off. It could be a call from the nursery (to let me know something is wrong with Alfie or that he has had an injury) or a medical professional involved in Alfie’s care ready to discuss how he is doing or arrange an appointment.

These phone calls are often distressing. There are so many professionals involved in Alfie’s care and their updates can often be negative or concerning. Perhaps they’ve identified the need for a further video fluoroscopy or a concern as to Alfie seemingly failing to track objects with his eyes. This has become the norm for us.

No choice but to cope
I can’t remember the last time I had a day where I wasn’t in a state of worry
about Alfie and his health. People often ask how we cope and how we manage on a day-to-day basis. The truth is that we have no other choice. We cannot give up; we cannot walk away. This is our life. This is us every single day and will be for the rest of our lives.

Rebecca Highton is a mom of twins, one whom has special needs. She enjoys blogging about life and the reality of her parenting.

Reprinted with permission from

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