Today, watching Hewitt I had a sickening revelation. We give him these meds to stop the seizures. The seizures that might delay his development. The seizures that might cause him to fall multiple times a day. The seizures that keep him from interacting. We started Hewitt on his first med after his 3rd tonic-clonic seizure. He didn't start having all of these other types until after. Now, as Doose syndrome onsets it can take time to see all of the different seizure types. But, there are definitely some meds that aggravate seizures for some kids. Watching him for the last 2 weeks, functioning at half of his usual self I can't help but wonder what would happen if we take him off of it. Before this happened I was hesitant to give my children much of any med unless totally necessary. Titus was my first to ever have an antibiotic. To this day, the other boys have never been on one. And, we get thrown into epilepsy and I suddenly am okay with just pumping my kid up with all these medications in the hope that they're going to stop the scariness of the unknown. Meanwhile I have suddenly lost my concern for the unknown of all of the drugs my kid is on. I can't tell if he's all doped up because he's having so many seizures or because he's on so many meds. I don't know if his seizures are actually from the epilepsy or if they're aggravated by the meds. I feel as though I don't know much of anything about WHY this has happened and I have been okay with that. I feel so angry that the Dr.'s won't look beyond the obvious for a why this is happening. We do that for every other thing that happens. But, unless it's something obvious with epilepsy we just say the cause is unknown. I know it's not as simple as that. The brain is very complicated and there is a lot unknown about it. But, we do know a lot about the rest of our bodies. And why wouldn't they look for something else that might be triggering his brian to do this? All day today I just couldn't help but think how ridiculous it is that he is so out of it and still having seizures and it hardly seems worth it to use meds if he's just going to be out of it all the time anyway.
I HATE THAT THERE IS NO RHYME OR REASON TO THIS ALL. I HATE IT. I HATE IT. I HATE IT. There is no limit to the amount of times I can say that to make me feel better about it. I still can't believe this is our life sometimes. That I look at him. He's so stinkin cute. And, he stares off and he drools and he drops and he throws his arms and I just sit here wondering where my kid went and for the first time I am asking why God has let this happen to us. And, even though I know there is an answer to that question - it doesn't always make it hurt less. I know He wants to carry this burden for me, but I have to be willing to give it to Him first. And, every time I think I've given it over I find some way to take it back. I find it in my tears, in my anger, in my frustration, in the meds that don't work, in the bruises on his face, in the stupid ridiculous blue foam helmet I have to put on his little head. I keep thinking I've handed it over and every time it starts to hurt I take it back. I feel like Paul in Romans 7 - ...for I have the desire to do what is good, but I cannot carry it out. For what I do is not the good I want to do; no, the evil I do not want to do- this I keep on doing.....What a wretched man I am! Who will rescue me from this body of death? Thanks be to God - Through Jesus Christ our Lord." vs 18,19,24