I hate saying anything about how Lauren is doing when she is having a good period or honeymoon from a new drug. So all I am going to say is she is doing really good since coming home from the hospital. While there she was started on Keppra in addition to her other drugs-felbatol and vimpat. I am not going to say the number of days/weeks things are good because this road is a complete roller coaster.
As much as I love seeing Lauren doing good it is a hard time for me. I am always wondering when I am going to start hearing the awful sound that comes with a grandmal seizure. At night I have anxiety wondering if this is going to be the night the honeymoon ends. I know I should focus more on the positive and enjoy the good times when they come, but I don't. As soon as I think "maybe this is going to work!" the seizures start back up. This has been the story for the 2 years and 10 months this nightmare has been going on. I have learned to function better in Trauma and hospitals then in "normal life". I tell myself to stop worrying, stop fighting to make her seizure free and go on with our "new life", make the best of it. I tell myself to give up, you have done the best you can to help her. But I can't. I am consumed with finding something to help Lauren. I see/remember the child that she once was and that comes out during good periods. I can't give up even though I want to. But I am tired of reading medical journals, searching the internet, flying to doctors across the country in hope that I might find something. Some doctors tell me that this is going to be her life but can't tell me what if anything is wrong with her. I can't accept that. But I am tired and weak, this past 2 week hospital stay tested my determination, faith, strength, and hope. Many people tell me how strong I am, I am not the strong one, Lauren is. What she has and continues to go through is so much for a little 5 year old child. Her strength and strong will is unbelievable! She bounces back time and time again, although it has taken a huge toll on her abilities-she still fights. So how do I give up when she doesn't? So we continue to fight and experiment...hoping everyday. But I have to keep reminding myself that Lauren is in the Lord's hand, I can only do so much.
We had to cancel Lauren's Make a Wish trip to Disney World when she was in the hospital. We just rescheduled a new date and they are planning Lauren's wish raising ceremony and farewell party at the Make a Wish building in Salt Lake. As soon as we get a final date I will post it, and all are invited if you are available to come.
Also, I will post some pictures soon.
Lauren
3 comments:
Oh, but you ARE strong. You are because you have to be, and you have no choice, but that doesn't change the fact that yes, you ARE strong.
Lauren's case makes me cry. I remember being there, unable to really let go and enjoy the good periods because it might end at any moment. I pray that we never, ever go back to that place, and I wish with all my heart that you all could escape it, too.
I was just going to e-mail you again to ask how Lauren is doing. Thanks for the update.
You're an example to everyone, including Lauren! Take care of yourself and know that we're thinking of you!
I know it's so hard. Naomi his the 3 years mark of having seizures in August and if you'd told me 3 years ago they would last this long I would have wondered how we would live through it.
I know I need to just accept that it is what it is and let her go to preschool (with an aide so she doesn't slam to the floor all day. Right now she goes 1 1/2 hours 1 day a week and I've gotten used to being away from her that long. Now I need to let go a little more.
We've NEVER had a honeymoon period on a drug. In hind sight every drug she's taken has made her seizures worse the higher we went up in dose. We keep trudging along on the diet, but even that I wonder about. This week makes 2 years on the diet and shouldn't it have done all it's going to do? How long do we continue? and will the Dr's let us just go off diet and not on any meds to see where she is.
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