After you get over the initial trauma of watching your child’s body flail in what can only be described as a living dead moment of complete torment for the first time, there are a few extra things that you have to grow accustomed to. For myself, I was fortunate to have a close friend who also has a form of epilepsy. My experience with her helped, however there is no comparison between your child and a friend.
Here are the five struggles I have personally faced during our journey of discovering my child has epilepsy:
One of the main struggles may be organizing yourself and being prepared. In truth, you are never prepared but you can be organized. I can’t tell you how many different doctors, therapists and other medical professionals we have had appointments with — I’ve lost count. It’s overwhelming how many people get involved in your child’s case and sometimes you end up with six different appointments in the same week. Sometimes you slip and forget what could be a really important appointment. I’ve found even with keeping a date book it seems that I still end up losing track of all the different appointments, and it can turn into a very stressful and aggravating situation. Luckily, most medical offices are understanding and forgiving.
Related: How to Climb That Epilepsy Mountain
2. Tracking the condition.
If you are like me, you have been asked to track or videotape your child’s seizures so doctors can have more information to go by. But in all honesty when the time comes and your child collapses into that seizure, it’s so sudden and so terrifying that taking out your phone and filming isn’t going to be your first thought. It really is an impossible task. You don’t want to be standing off to the side with a phone in hand like some tourist. You want to be at your child’s side, clearing the area and making sure to minimize any damage. You want to be holding them and stroking their hair while whispering comforting words as they finally start to come to. At the end, you are left estimating the amount of time it lasted, but you may remember every twitch, every sound, ever expression on your child’s face as it happened.
So many different options are out there for treatment of your child’s condition, but it’s not a perfect science. There is an arsenal of medications we have used to try and control my child’s seizures. Sometimes these medications can work wonders for your little one, sometimes they barely make a dent. It’s painful to know you have to pump your child with so many harsh medicines just to try and have them function for the day, and even more heartbreaking is when it just doesn’t work. It’s a never ending fight, playing with dosages and changing what medication to give them.
You want to be your child’s flawless protector, the momma or papa bear. You want to keep all the bad things away. But for a child with epilepsy, all the bad things are invisible and impossible to stop. You can’t scare away a disease or kiss it better, you can’t block it from coming and you have no control. One of the biggest struggles I have faced is watching this disease progress. You watch as your child changes in behavior, you watch as they struggle to pull themselves up out of their fogs and you weep uncontrollably for every reason. You cry when they suffer, you cry when you realize just how much they are going through, you cry when they have a good day and the relief washes over you in the most unexpected and intense ways. You cry… trust me it may come often and without warning, because you know deep down that you can’t scare epilepsy away.
5. Coming to terms.
In spite of everything going on with my child, and in spite of how her mind seemed to progressively become weaker, I remained forever in denial. I couldn’t face the fact that my child was unlike any other, I could not admit that my child could not keep up. You may get angry, you may be angry at yourself, blame yourself because in your mind you may wonder if you did something wrong for your child to have epilepsy. You may argue, you may lose composure. My child is 8 years old and has developmental delays. In spite of how much I tutor, simplify and explain, yet she still struggles. It took a long time for me to come to terms with these things. It took a lot to admit that my child does have disabilities because of the neurological damage done by her specific seizure disorder. This part was unknown to me, my friend did not have any brain damage from her seizures. So why was my child experiencing this? Before the seizure, my child’s development seemed on track. I still struggle to accept it, but I have learned to come to terms with some of it.