At home we continued with treatment for the infection but never took the prescription for the seizures, as what registered in my head was MOOD STABILIZERS. On Monday, I went back to work, and this was the beginning of serious panic attacks on my part.
I had not considered the psychological impact of this event, considering in the hospital, I was with him practically every minute; and going back to work meant that monitoring him would have to be through his phone or Princess K and Ninja. The panic attacks were frequent and intense; my heart would beat so fast, especially when call from the children came through, or I failed to reach him on his phone. sometimes the breathing exercises would help.
Each time the clock struck five, my stomach would hurt; the chest would tighten. But I had to go home, listen to each detail of his day, and the other kids too. Parenting solo is the gherro sometimes!! This was my reality for two weeks. I failed to mention that we did go back for a review, I think a week after discharge, and the look on the neurologist’s face when I told him he hadn’t started him on the medication was one of shock and horror. He referred us to Aga Khan for the advanced MRI.
The two weeks at home were ok, until a convulsion happened on the weekend of week 2. I remember hearing some disturbance in their room and Ninja calling for me. The shaking of their bed had woken him up; by now you know the process, right? Rub his back, (I can almost hear you say, speak gently to him as he lays on his side) when he woke up, I gave him the medicine.
We did get a therapist; the ones he had encountered at the hospital were not a fit; I then asked for referrals to a neurologist; not that there was anything wrong with the one we had, but I wanted someone older and therefore more experienced. We found one who took time with us, running tests and answering questions while assuaging the fears I had. Samurai’s MRI was great, and his doctor helped us make peace with the fact that we may not have a clear medical explanation for why?… but we knew the why remember?
According to the results, he was in the 15% that usually have no clear cause. The Faith part has brought me to a place of peace and trust that he will not be on medication for the rest of his life, or the two years that the neurologist said was the likely outcome.
It has removed me from a place of why, my son Lord, to give us the strength to ride through this, and gratitude that he can access what he needs to function.
Our current situation: we are on daily medication, therapy, lots of faith, love and support from family, church, and friends.
The purpose of this story is not for pity but to tell a story that glorifies God and hopefully gives strength to someone.
Eternally grateful
