Dawn - posted on 02/14/2012 ( 4 moms have responded )
hi everyone, my name is Dawn and I am new to this trying to figure it all out. Iam a mother of three and my youngest just turned 9 but like a 2yr old my silly girl. She has epilepsy, autism and add and is developmental delayed. She has been through so much 2 brain surgeries and has a vns in her chest now, i just dont know what im doing nor why i cant help her as you all must feel about your own. Madison started having seizures when she was about 6 to 8 months old little ones you couldnt tell if you didn't know until she got about 2 then she was having about 50 to 70 maybe more a day she made sounds only. she is know just learning new words and its beautiful! Madison had her first brain surgery in 2008 she was 5 this was a new neurologist in memphis tn we live in east tn, and it was such a difference in her she seen the stars for this first time in amazement and christmas lights like it was the first time. and the seizures where gone. well at least for the first 6months. then they came back getting worst everyday. then doctors tried brain mapping which is terrible, awful worst thing to ever see your child go threw! this is where they think they can take that part of the brain out by placing grids on the brain and trying to pin point the seizure activityand her head had wires running out her head while hooked to a monitor and staples holding skin together. but the end result was that we where unable to take anything out seizures are coming from to many places. so she now has a vns in her chest. I just don't know what im doing anymore and if im making the right choices for her. i always thought i could change this and we would work this out and i could get her better but i can and the reality is killing me that she will never get what she deserves and its just to be free and to have all the things that we all take for granted. It all hit me this year she started 3rd grade new school and kids can be mean and i took my little bald baby girl to class and i looked around the room and it hit me like a ton of bricks my baby is a special needs child and has a disability and i feel like i have failed her and its my fault she is this way and if i could have only done something different. im really struggling with this i know im not the only one that has these problems/feelings im sure. i hate that kids suffer or struggle it breaks my heart truly for each and everyone its something i will never understand. if anyone can offer any advise to me i would be so greatful! maybe i can help someone with what we have been through.