I have thought this over multiple times since my youngest daughter, my mother, and myself left the children’s hospital on Monday. See the thing is that my tiny little toddler has these episodes that nobody can diagnose. I have been to the ER once and the children’s hospital twice with her. Poor thing has had to undergo two different EEG tests and it’s painful to sit in that doctor’s exam room and hear that her (yes I have to admit that it is “hers” and not “the”) neurologist is baffled.
See my daughter has had these episodes that at first we thought were a type of seizure, but now that they keep happening it’s not clear what is going on. I have had her eyes checked and the optometrist said everything looked great. So we ruled out something there, good right? Her first EEG came back normal, good right? Well we had to do a second EEG for a follow up, and that one came back normal also. So now because these episodes are so short her doctor doesn’t think they are migraine related (which is really good). But a pattern has developed… 7 scenarios since December. Now her doctor thinks it could still be seizures OR something called channelopathy.
I received some crushing news that because her EEG was normal my little girl will need to be sedated and have an MRI performed. This is something that the hospital calls you to schedule first. So I’m sure you all can imagine I have been waiting so patiently for them to call me. I also was given two really serious prescriptions for medication that makes everything so real. One is an emergency seizure medication, and the other is a medication she will need to take daily and it treats both channelopathy and seizures. The latter medication sounds scary and the few side affects I have seen so far are frightening.
It’s frightening right now to watch my little girl playing with her big sister and question how healthy she actually is. She is so full of life and love, she makes our lives so much brighter. I’m afraid to think of the MRI, but also I hope that it will show something that will finally give us answers. I’m afraid to give her a medication that she may not need. But I’m also afraid to not have the emergency medication on hand, we live to far from the hospital for EMTs to get here fast enough. I’m afraid that we will never know what is wrong with her, and just medicate her in hopes that it is actually working. But then I’m also afraid to not medicate her and realize that a huge episode could have been prevented.
It’s times like this that no parent should have to go through. My oldest daughter has a friend that is currently fighting leukemia and I can only imagine the stress they go through every day. I had hoped I would never know, but now there is a possibility that we too are fighting something unknown. And it scares me to think of what the MRI could or couldn’t show us. What are we going to do if there is something there? Or what will the next step be if there isn’t anything there? Only time will tell. If nothing else Monday has taught me that anything is possible in life, and there is no such thing as “it won’t happen to me.” It has also taught me to love my girls harder and to hold my entire family closer and tighter.
My mom asked me Monday night (full of sarcasm) how I could possibly have any stress in my life. And now that I’m thinking over everything I think stress comes from the unknown. Sure we, as human beings, stress over little things and think critically over every little thing but I think it’s the only way for us to process the things we don’t understand. We strive to understand everything, and the things we don’t we ponder them more until we figure something out. And that my friends is how stress comes to be, or at least that is how I think it happens.
For anyone reading this right now, I hope you never have to wonder how healthy your child truly is. For those of you that already do and know the struggles I send you strength and a hug. And I hope for all of us that are in this limbo of unkown that there soon will be a light at the end of the tunnel with answers. Never lose hope, that is something I must remember.