I am so tired. I keep asking myself how much more I have left in me. Four hours of sleep a night isn't enough for me to function on. I walk around crying all the time. "Normal" parents do not get it. One friend says, let the house cleaning go. Can't do that or the three year old would have gosh knows what in her mouth. Same person, get "P" a personal aide. What the heck have I been fights the Children with Special Needs people for?
And I have to admit I am more emotional tired than phyiscally. Yesterday "P"s neuro finally called back. Seems after his 48 hour EEG/EKG with video monitoring we have more answers. My husband and myself really thought we were dealing with seizures. No they couldn't monitor them but if they are temporal lobe seizures they can be very hard to detect. We had braced ourselves to handle that. It seems we must have looked like the scene in Forrest Gump where he runs and his braces come flying off. No amount of bracing could have prepared us.
Before I say what the doctor said let me preface by saying I have always told the doctors not to beat around the bush. Tell me straight out what is wrong that way I know exactly what I have to deal with. That being said...direct quote " P's brain is slowly killing him." I am not sure I have exhaled yet. It seems there is more damage to his brain stem. Neuro explained it as P's brainstem is telling his little body, okay we don't need anymore oxygen. So breathing stops for at the most 30 to 60 seconds. This is why he starts shaking and his hands, feet, legs turn purple. All the oxygen goes to the heart. Also this is why he has started choking on everything. His brainstem says, enough and the body listens. Through my tears I asked the doctor, what do we do now? He says..we do nothing. That is the hardest part for me. I am the one with him 24/7 and now I get to watch him die? And not know when? Oh and meanwhile..still take care of his little sister, my two daughter, my husband, keep the house up and going, meals...Can I do this? I know I have too but it doesn't make the doubt go away. Nor the resentment. Not at my son but at his bio parents that are still out there using the same drug that caused all this for him.