After the first convulsive seizure and our first cluster seizure we were beginning to wonder if this was how our life was going to be from now on. We wondered if this kept up what his life would be when he got older. Would he be able to get his license when he got older? Would he get married and have kids? He was still very young, not even four and he was having to go get valium in his behind to stop seizures. Now this was not quite what I pictured when I thought of our family but this is the family we have and I would not change it for anything.
Now we are adjusting to the new reality that our family is dealing with. The convulsive seizures are something that you just never get used to, they never stop being scary. The truth is no matter where we go we must now carry liquid valium with us where everywhere we go. We cannot really find anyone that will watch the kids so we can have a date night, my mom is willing to but we hate to use her too often. We have had to educate teachers, friends, family members about seizures and first aid for seizures. We have even taught our younger son who was only 2 to come get us if something starts to happen.
The seizure activity has slowed down and we are getting used to all the medicines that he has to take every day. He is being so brave about taking all the medication.
There are some changes we have had to make in regards to our everyday lives. We make sure to have him get lots of sleep because we noticed that when he is tired or sick his seizure threshold gets lowered. If he gets a cold or flu or even an earache he is likely to have a convulsive seizure. Our pediatrician is probably getting tired of us bringing him down as soon as he gets a slight fever but we need to get him on antibiotics if he has an infection. The reality is that too many seizures or seizures that last too long can cause him permanent brain damage so we were going to do everything we can to make sure he does not have that happen.
Our new family picture included one child with epilepsy and two healthy children, or that is what we thought.