Eye of the Tiger

My son Alex has been diagnosed with Childhood Apraxia of Speech (CAS). Since he was 18 months old, we have seen therapists, doctors, specialists and more. I can’t count the number of times that we have spent sitting in waiting rooms. Today was another one of those days. As we drove to his ENT (Ear, Nose, Throat) doctor for a check-up, the radio was playing the song ‘Eye of the Tiger’. Which, funnily enough was the top song of the week when I was born. Singing along to it, pondering the long list of things on my schedule today, I got thinking of the song lyrics. It has been the theme of my life pretty much. Fight or Flight. For periods of my life, I have found myself in a fight of some sorts, like fighting for the best medical care for my mom when we found out she had only a small amount of time left. Or flight, I was the best at running away when things got too hard. I was the best at running away, deflecting or completely shutting down. 

So today as we sat in the ENT waiting room, I was thinking of the ‘fight’ we have been through to get here. We have had what feels like hundreds of hearing tests, ear infections, ear tubes and appointments. We have had OHIP covered hearing tests, private hearing tests and have even had to walk out of an appointment when a doctor complained about the patient before us in a wheelchair moving her chairs and now, they were not lining up exactly how she wanted them to be. Compassion and empathy are a trait we now look for when we need to see a new specialist. 

We now, after years of sitting in waiting rooms, seeing specialists and networking with other families have finally found amazing support for my son and for us too. 

The one important lesson I have learned is that flight is not running away now, it has now been replaced with the ability to leave a situation, any situation when you are not being heard, respected or cared for as you should. 

See my fight or flight has taught me that I have and will always fight for the best treatment for my son. It breaks my heart but there is no cure to CAS so as parents we are the ones that currently need to make sure Alex’s words are being heard and understood. 

I will fight for it because the life I have had taught me not to put up with anything else than we deserve……doesn’t mean I still don’t cry or get anxious over what his life will be and who will fight for him when I’m not here. That is a thought or feeling I can’t run from; I must sit with it and start to get prepared so that Alex has the tools he needs to live his best life.