Living the Invisible After diagnosis, we spent a few years getting my sons medication right. He was having daily seizures and so he was on anti-seizure medication for a few years, some worked for a time and then they would stop so his neurologist team would increase the dose or add new medications. There was a time when he was on three anti-seizure meds twice a day, and these still did not work. When my son started preschool he was drugged out, he was unable to retain information or learn. We were at the hospital emergency department every other day, and it was at one of these visits that I suggested to the team what would happen if we took him off all medication and just carried an emergency medication? Luckily one of the neurologists agreed and decided to give it a go. He has not been on anti-seizure medication since. We carry emergency medication where ever he goes, in case, I know we are lucky, other children are not as lucky. He still has seizures however the most common type tends to be absent seizures which are hard to medicate. We are very lucky that the other types of […]
At night when the sky is clear I love to look at the stars, I remember doing this as a child and thinking how big the world was. I now look at the stars and feel gratitude for my life and family. By the time my third child was born I thought I had a pretty good handle on what being a mother was all about. That changed one Sunday morning when I found my third child at 11 months of age in his cot. He was laying on his back, breathing heavily and his little body was convulsing like he was having a terrible nightmare. I just could not get him to wake up. This was the moment that my life as a mother changed forever.
The paramedics working on your son on the lounge room floor while you watch in a state of shock, the questions that you are unable to answer, “Did he swallow something?” “Did he have a fall and hit his head?” and the ambulance ride was a blur. The emergency room was full of medical staff all trying to get him to rouse. Asking me as mom to speak to him to get him to wake, but I was in a such a state of shock, I was unable to speak.