words from a mother's broken heart - Epilepsy Message Board

niecsey · 04-30-2005, 05:13 PM

Where do l begin my little girl lies asleep in my bed as l sit here and scan the net looking for knowledge into this 'curse'....... l hate my babys brain thats the only way l can describe it.... something has invaded and taking over (no wonder in biblical times they thought someone with epilepsy was possessed)lve a lump in my throat the size of a mountain and a head full of worry and a heavy aching heart.... now l know theres folk worse off but shes my baby girl my pride and joy and lm feeling really sad right now and so scared of the future not knowing what its going to bring.This is going to sound mad and ive never actually ever mentioned or wrote these words before, l had this feeling along while back,but l knew a while back before the 'seizures' that something didnt feel right even though there was nothing to suggest it gut instinct mothers instinct whatever you want to call it l cant even type what l really felt..cos it scares me... l had a feeling something wasnt going to be right without good reason or any reason , its hard to explain to sum it up im scared really scared im trying to be brave but it hurts like heck my little princess my perfect baby girl my clever girl ld take it all from you and have it myself if l could have 1 wish how do you all cope? How do you cope seeing this happen to your child ? Honestly its ripping my heart out

buliem · 05-01-2005, 12:40 AM

Oh sweetie. I know exactly how you feel. It's like your world is turned upside down. I always knew there was something different about my son too, but we are all different right? Patrick is my only child and most likely the only one I'll ever have. It's hard to come to terms with the fact that he isn't "perfect" Still I love him so. You just have to grieve for that perfect child and let them go. Pray that God gives you strength. I know this is really hard because the future is so uncertain and we want our children to have a wonderful trouble free lives. Just do your best to see all the wonderful things she can be and is already. Epilepsy is only a small part of who your child is. She's still the beautiful,clever girl she always was. Pray that God guides the doctors into the very best treatment too. They do the best they can but if they knew everything they wouldn't say they are "practicing" medicine. Read everything you can get your hands on. Knowledge is power. Take a deep breath and just gaze on the beautiful miracle you have before you. It's really difficult at first. I do still have some very bad days. As time goes on I pray it it will get better for you.

God Bless,
Julie

kayakmom · 05-01-2005, 04:57 AM

It is so heartbreaking. JUst keep telling yourself that this is the same angel that you love and cherish. She will still do so many things to make you proud. You will be amazed at how much more your heart will swell with pride as she fights challenging times!

niecsey · 05-01-2005, 09:32 AM

Thank you for your replies and deep understanding (Y) lm sorry but lt really really hit me last night for the first time, l was watching her sleep and l thought 'you poor little innocent thing you poor poor baby why why why?' (shes 9 but shes always my baby ) you lot are marvelous and its peace known theres others who feel the same .This morning l thought maybe l sounded a bit 'mad' with what l wrote but l meant every word and it come from my heart. I feel a brighter today and maybe l needed to let that all out buliem ,kayak thank you for been here lots of luv niecsey xxx

MommyX's3 · 05-01-2005, 05:50 PM

Niecsey, I know exactly how you feel. It's the most terrible feeling in the whole world to be helpless in helping your child overcome their seizures. My daughter, Jasmine, who is now 18 months was diagnosed with epilepsy (infantile spasms) at 2 months. She isn't able to do anything at all, she's just like a newborn still because her seizures are so bad that it has stopped her development. I pray for your daughter because I know exactly what you and your family are going through. Sometimes it's hard becuase they are so little and precious and do not diserve this "curse" at all. I hope for the best for you an your family. Lots of love, Tonya