What is normality for you? Before having Rory and Alfie, I imagined what it would be like to be a mum.
To raise my children to live strong and independent lives, yet that is not the reality we face.
For us, our days are full of complexities and worries, and most notably, living in a constant state of stress.
Stress about Alfie. Is Alfie 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… All of these questions and so many more.
Normality for us is my blood pressure constantly above average, my phone always on in case any of Alfie’s medical professionals need to get in touch, 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 normal day to day life.
Each day that I drop Rory and Alfie off at nursery it takes far longer than it should so that I can ensure staff are fully updated on how Alfie is doing and informed of any changes he may have had to medication/routine and what appointments he may have that day.
At pick up, it is a full breakdown of how Alfie has been, his mood, how well he has 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 in order to ensure all aspects of Alfie’s day have been discussed.
Work is constantly interrupted by my phone going off- a call from either 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 to discuss how he is doing or to arrange an appointment.
These phone calls are often distressing, as with so many professionals involved in Alfie’s care, the updates can often be negative or concerning, such as the need for a further video fluoroscopy or concern as to Alfie seemingly failing to track objects with his eye gaze.
Yet this has become the norm for us.
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, how we manage on a day to day basis, and 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.