Life will always have its up and downs no matter who you are, and in the early hours of November 7th 2018 I had to sit through another seizure and watch my beautiful little man in pain, I realised something. This is our life now and it only happens on rare occasions (which I am grateful for, others I know have to do this on an everyday basis) but it’s going to happen regardless of how much I try to avoid it.
Jimmy's body can’t handle to much stress, so if he has a cold coming on, or he’s constipated, hot and dehydrated he will most likely have a seizure. Sometimes it can be avoided and sometimes it can’t. After every seizure the stiffness from his body during it, he hurts himself and cannot walk, sit or stand for a few days. So I’ve had some time off work and I’ve also shed some tears, but within all the hurt in MY heart Jimmy puts a smile on his face and still giggles from his belly. HE is the one who shows me how to be strong!
When his carer visited us on that Friday he was so happy to hear her voice he tried to sit up while his face went red and he was pain we had to tell him it’s ok he doesn’t have to, then on Saturday morning while I was getting ready he stood up in shower yelling out to me and saying “owww” while holding his hip/thigh. I quickly got him out so he wasn’t standing long.
Over the weekend we went camping with some friends, Jimmy still was in a little pain as we were driving he got a little upset going over bumps in the soft sand on Double Island. But as soon as we were on the hard sand again he would giggle still trying to put on a brave face. That night we chilled by the fire with our friends and Jimmy didnt say much he just sat there so at peace, enjoying the good vibes tapping his ankles and swaying his head as well as singing a few tunes. He was in the Moment loving every minute of it.
Jimmy is My Strength and My Courage he shows me all the time. Just push through this pain and you’ll be stronger than ever, and every day I thank the universe for giving me such an amazing child, who has taught me more about living than life itself ✨💖