By the end of the week, my family will be coming off of the adrenaline that is created when my daughter enters another health emergency. On Wednesday, she will be having another surgery to remove the kidney stone and the stint that was put in her last week. By Thursday she'll be in recovery mode, and by Monday she will be normal again. We'll all breathe a giant sigh of relief, and we'll carry on from here. Well-meaning people will say things like, "Wow!! I'm sorry she went through all of that!! Hopefully that will be the last time anything like that happens." I will respond back with something like, "I hope so, " and we'll move on because, let's face it, they won't want to hear the truth that we'll face something like this again, or possibly worse. That's just how epilepsy rolls.
We will have periods of peace where she will be in good health. The meds will be working, and she'll have seizure control. School will go on like always, and she'll make progress. And we will love all of those moments. We'll hold them dear to us, and treasure them always. Don't ever think we take those moments for granted because they are a gift to us.
But let's face reality, shall we? We'll face another health crisis. It may or may not be worse than this one, and it will have our family realing. We'll wonder why she has to go through so much, and when enough is enough. And through those moments of peace, she'll get sick with a cold or strep, and it will be a huge deal because we won't know if a seizure is coming along for the ride. It's never JUST a cold or JUST a strep infection. It's a cold/strep with the possibility of a seizure.
And what if a seizure does happen? We have to look and see what the trigger was. Was she sick? That's easily explained, and we'll probably do a slight medicine adjustment. What if there wasn't anything obvious? That's a bigger medicine change and an EEG. What if the medicine doesn't work? Well, that's a bigger issue altogether.
I hold so much hope. I'm probably one of the most optimistic people you'll ever meet, but I'm also a realist when it comes to this. I appreciate the hope that she'll grow out of this someday because I hope the same thing. I pray for it daily. I also know that the likelihood of that happening is low. She responds relatively well to treatment, but if for some reason her medicine levels get low, she has a seizure. She'll probably be medicated for epilepsy for the rest of her life.
I know why most people will hope that this doesn't happen again, and why they so desperately need to hear that she'll probably grow out of this. I get it. It is hard to comprehend that she will carry this with her for the rest of her life, and this little event won't be the last time that we get on a first name basis with the doctors at Scott & White. It wears on your soul if you think about it too much. It's easier to think that she'll get better from this, and be completely healthy in her adult life. Please believe that I want that more than anything else on this planet.
I want you to understand what it means to have epilepsy. It's not just the seizures and the medications to control them. It's the side effects of those medications. It's the weakened immune systems because of the medications. It's the brain damage from the seizures. It's the three-inch thick binder that's full of your child's medical history. It's the thirty-seven minute seizures that lead to days in the ICU. It's the ambulance rides. It's the helicopter rides. It's the fear of the common cold and what it will bring to your child. It's the list of doctors your child has to see just to maintain status quo. It's the fights with the schools. It's the closed minds of people in public when your child is having a meltdown that may or may not be related to seizures or the medication. It's the hundreds of dollars spent monthly on medications. It's the hours of research you do to understand what your child is going through. It's the late nights when you're holding your child because she is in so much pain from who-knows-what. It's fighting tears when all you want to do is cry because you have to be strong for your child. It's the quiet moments you steal in the shower so that you can cry by yourself. It's the fifteen doctors on speed dial versus the four or five regular life people. It's the checking on your child compulsively in the middle of the night because you're afraid of nocturnal seizures. It's the night terrors where you're chasing your child down the hallway in your house because she is heading out the front door. It's the ER visits that last fifteen hours long. It's knowing more about your child's conditions than most specialists around. It's fighting to be taken seriously by those specialists.
It's the moments of peace and happiness that you treasure and look back on when things are crappy. It's the handful of people that really "get it." It's hope. It's understanding. It's awareness. It's being thankful because even though things really suck, it's not cancer or something else as equally as terrible and frightening. It's finding the strength you didn't know you had to carry on for your familly. It's the reflecting on your experiences, and what the future means, and knowing that the beginning of this little journey is a lot closer than the end.
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