July 26, 2017
by Carol Thompson
Mac is 3 years old, he was born having seizures and has had up to 80-100 seizures a day but looking at him and playing with him when he is well and seizure free (limited time gaps) he is the most adorable child, just like any other child. He is funny, playful, laughing and happy but that can change in a split second, changes in their expression, their eyes, their movements etc, this is the sign of a seizure coming.
Once the seizure is over Mac has to rest and it can take up to a couple of months to recover. It takes an awful lot out of the child as well as the Mother, Father , Grandmother whoever is with them at the time. It is the most frightening thing to go through at first but when you have experienced a child having so many seizures it becomes the norm.
You can never let your guard down and you are still very much aware of everything you just work at a different pace, you know what is happening and you go with it not against it, the child is the most important.
My main concern is that how big is this one going to be and will we need the ambulance and another trip to the hospital.
As a Grandmother I feel helpless at times, I am on the outside looking in as my Son and Daughter-in-law are so very aware and quick in dealing with this, they are scared out of their wits every time their child has a seizure but they do not show it, their main concern is their child and what his needs are.
That is where I come in at any given time to be available to help out either while Janine is comforting the child that has had the seizure or with the other two children while Janine is in hospital and Brett is at work.
Brett and Janine are amazing with their three children they try to keep life as normal as they can in their situation.
I just hope that one day, during my lifetime some cure can be found for children who have seizures, it is the most frightening thing to watch and go through but you forget your fears and concentrate solely on the child just to get them through this current seizure and hope there is o permanent damage.
This is a normal day in our family but the best is when the children are all well and say when I arrive – how long are you staying Nana, how many days can you stay and then you have to leave and they plead no please stay Nana, just one more day.
That is the most beautiful thing a Grandmother can hear and I would not change a thing..