Want to feel helpless? Who would? Well, guess what, I do.
The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.
This happened to me last night.
Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.
Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.
Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.
I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.
22 hours ago