And we start again…

It has been a somewhat crappy week or so for me (not in general… I’ve just been feeling particularly sorry for myself lately and it has been giving me Eeyore’s little black rain cloud… nothing that is too terribly horrible for the rest of the world… just my own personal crappy mood.

Today was the b!&$% slap in the face to bring me back to my senses.  And it did.  Nuff said.

I have been feeling particularly crappy because I have been feeling a lot like I’ve been letting people down… not being what they need me to be… in general… and that has started my “I feel like a failure” mood.

Add to that the fact that I have had the distinct feeling that no one is willing to even talk to me about fund raising right now (yeah, I KNOW it is so not true… but it has been that little black rain cloud kind of feeling) and raising awareness of epilepsy…

Add in the semi-complacency of not having any majorly grande-mal seizures and and having a life that started to try to approach normalcy… Life came back and woke me up to what matters most.

It was SAT day.  Skinny butt did his 5 hours at the SAT test and thinks he did well.  I have no doubt he did.  These tests he actually doesn’t do too badly on.  And he kicked butt on the PSATs so I don’t figure he has a care in the world on this one.

Lunch was Hoody’s Subs.  They are really good.  I got a saute’d veggie one…

When we got home… I hollered up to Amandya to come get her salad… She made it half way across the loft before she seized.  Adam heard her and ran to help.  Pushed the coffee table out of the way… I held her until the seizure itself ended… I held her while the aftermath worked its way through… I smoothed her hair while she thought she was 13 and while she thought she was 14… I held her hand and her head when she realized that it happened again and she cried.

It’s not fair… And I know that this isn’t something that a booboo bunny or kisses can make go away… I know it isn’t something I can fix.  But I feel like such a failure as a mother right now… no it isn’t rational… no it isn’t logical… but it is what it is.

I sat in the office while I waited for the doctor to call me back and cried and cried because I can’t fix this for her.  I can hold her while she goes through it all but I can’t fix it.  I can be her advocate (and if nothing else… this put the steel back in my spine to make a difference for Amandya and for all of the Amandya’s out there who are dealing with all of this or anything like this…

I can help her tie a knot and hold on… I can hold on to her and hold on for her and help her to get through the NEXT six months (we start counting again) and help her to find a way to realize that epilepsy doesn’t define who she is… she is not the condition.  It is a part of her, but so is being the little squirrel who was climbing the dentist’s apple tree at 2 and the girl who eeps when she sees chip and dale… and the girl who is trying to deal with all of this “difference” while all she wants to do as a teenager is to fit in…


A Day Like No Other… the name of the non-profit

Monday… I go back to reaching out to everyone I can.

This afternoon… we go find out if Kepra ER comes in 250 mg tablets and we start on the next set of waiting to see what the future holds.


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