Saturday, May 15, 2010


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.



  1. Hello,
    New to your blog. My son is 3, has DS and a complex heart defect, we are post 3 heart surgeries. He sees his cardio every 4 months, we are thankful beyond words that he is doing so well and give God the glory and have faith that Will has a wonderful future. But we also know, the road has many twists and turns, and we never know what is around the corner, with his patched up heart.
    your post hit home to me, as I too, just want to be a mom of a wonderful child, who happens to have DS. I love his extra chromosome, never want that to change, but If I could give him a PERFECT a instant. For quite a long time, I was very jealous of parents of healthy kids with DS, and angry when I heard them complain about typical DS issues. I just want my child to live, I dont care what his IQ is, or how his IEP goes, or that it is so hard to find shoes that fit...
    So I here you, I know the hurt when people say something with good intention, but it actually makes it worse. (the worst...God only gives you what you can handle. That is so wrong...God did not give this to us, but He is helping us take on that)
    So let me just say, Quinn is gorgeous, it totally sucks that she has epilesy, it doesnt seem fair. I will be praying for your precious treasure.
    Kim, mom to Will carepage HeWill

  2. Karyn, I am so sorry to hear of Quinn's new seizures. I do know how heartbreaking it is to have IS in the rearview mirror and have something else take its place. I just breaks my heart when Katelyn seizes and I can do NOTHING but watch her get through it. Of course they always up the meds but sometimes I feel like it's just a bandaid covering it and they will always come back. Some even go as far to ask "Is she cured?" and I just tell them "No, probably never will be." as hard as it can be to say that sometimes. Keep your head up Karyn, we have to remain to fight for these girls and there are so many rewards involved when they do make developmental gains or even something as small a great smile from them.

  3. Sorry Karyn. I hate this for you, and Quinn, and your family. I wish I could take you out for coffee, or whatever. Hugs to you & Quinn.