A Mother's Nightmare

As a teenager I began to have seizures and no one knew what was wrong with me. So the Dr.s of the small town in which I lived put me on anti convulsant meds and hoped I would be ok. I then moved to a bigger town and my symptoms worsened. I went to a bigger hospital and under went a few tests. The Dr.s said I had a Venous Angioma wich was just like a mole. It would never cause me any trouble. Let's not forget by this time in my life I was having several seizures a day and there was a blob on an MRI that was not supposed to be there.

Well long story short, 13 years and dozens of Dr.s including the Mayo Clinic, I had brain surgery to remove an AVM from my brain. I have been seizure free for almost 9 years and live a very active life.

I have 2 children and a wonderful husband of whom all were there during the time of my surgery and my children I was told I would never have.

My daughter is now going through the same thing I went through. All though she is very young and is unaware of the turmoil I am in she is now being sent through the same horendous paces I remember so clearly.

She is now 10 and just yesterday she had her 3rd MRI to watch what she has been diagnosed with, a Pineal Cyst. These will never cause any trouble the dr.s have assured me. Although, she is now having migraines, difficulty reading and in math, she is no longer articulate with her speech and her moods are well there is no better word but premenstrual.

This "Cyst" is also on the 3rd ventricle of her brain where the fluid drains. The Dr.s told me that if the cyst gets clogged or lodged it will cause an emergency and have to be removed. Why wait? Why when you know it is there and it is obviously causing a problem, and there is a likely hood that it can cause a problem, why not be preventative?

Is our medical field all about being on the defensive that they have forgotten about the patient and their well being. What about the hours we may go before we see there is a problem and the unrepairable damage that may be caused?

I never wished this path on anyone. My lord in heaven why oh why does it have to be my baby girl??? I thank you that my baby boy is safe and healthy. Please let my baby girl rise above this. Please let this malformation disapear.

I am lost. A lost sheep. My faith is starting to fade when I know I need it the most. I wonder if I have been forgoten. So much tragedy in a very short life. I don't want my children to be subjected to this. To fear. The unjustifiable ignorance. I want them to run and play in the yard. Blow bubbles and giggle about boys or girls. I want them to be safe and happy. I also want them to know a little pain and suffering so that it doesn't blow them away when it happens. I am realistic. I want them to know it from the outside. I want to teach them. Isn't that why I had the life, so that I may rear my young to be what I have learned?

My nightmare is before me. I must advocate and will not stop until we receive answers we can live with. Until that day I will not stop. Dear Lord please push me to not stop.