This is the time when my mind starts spinning! Right when my kids are asleep.. and all is quiet! And I am left here to sit with my thoughts. My mind races. Some nights its fine, and im at peace, no worries, or fears, or thinking at all...
Tonight unfortunately is NOT one of those nights...
I am just so tired... EXHAUSTED! Having 2 children alone is hard work. But having 2 children, and then one who has Epilepsy, and another who hasnt stopped wheezing in 2 1/2 months... and then being almost 3 months pregnant! I AM SOOOOOO EXHAUSTED! I am so tired that I can barely stay awake to finish my homework! It sucks!
Everyone keeps saying, you need a break, take a break, get someone to give you a break! But its not that easy... and people can say it how they want, its easy for them to say it... its easy for them to take a break! But they dont have a child with Epilepsy... they dont know how I feel. Its not that easy to just get a sitter and up and leave and go do something. I have seen what happens when my daughter goes into Status, I have seen what happens when she starts clustering... and it scares me IMMENSLY to even think about leaving her right now!!!! NO WAY!
Aurora's seizures come when they want, and I have SEEN way to many times, people who DIDNT know what to do, or didnt think it was a seizure because they had there OWN thoughts on what seizures were! Not to offend them, but uneducated that there are MORE than one different kind of seizure!!!! I dont EVER risk my daughters life, I am her advocate, and I have been there since she was Born, and know my child inside and out, better than I know myself... and I just havent learned to "TRUST" yet! I know I trust myself when it comes to taking care of her.... but I havent yet trusted others... in fear that it could take ONE mistake and risk her life in an emergency situation....
I am not saying this to be offensive, this is my blog, my diary, my vent! And these are my feelings! I love EVERYONE who has been there for us! So my trust doesnt steam from personal issues, it steams from watching over and over again the medical feild brush things off, or not handle things how they should have been handled... that is WHY I am not trusting! I know that if Aurora is with me, I know what is going on, I am educated about her E, I know what needs to happen, and I know how to take care of her when she is seizing! That comforts me! My daughter for the past 9 months has been having seizures... just in the past month alone she has had over 40!!!! and they come unexpedately... I dont have a time for a break!!! They strike out of nowhere, and the one's who read my blog with children with E, you know exactly HOW this is... because we have talked about it on the forums.... its not that easy!
Aurora is my life, my soul, the reason why I breath everyday (Along of course with Mr.Wesley)... these 2 complete me! And I am just not ready to take a break! My idea of a break is being able to take a uninterrupted shower! But you know what you learn to live with how things are happening... our life for the past 9 months has been hectic, crazy, scarey... but in between there has been laughter, fun, and love!!!! I dont have time for a break, and I wish people would stop saying that to me!!!!! Like I wouldnt LOVE to go shopping, but with what money? Like I wouldnt love to go for a couple hours and do something BY MYSELF.. but who will watch the kids? And when they watch them, whose gonna pay them? And who is going to be there when Aurora has a seizure and the Sitter freaks and doesnt DO WHAT is needed when its an emergency! I will seriously take a break when my daughter goes for MONTHS without a seizure and is controlled! That is when I will ENJOY being away from them for a break... but right now, even if I was to go... I would STILL be worried EVERY SECOND about how she was doing. If she was ok.... BLAH BLAH BLAH BLAH BLAH!
So if someone wants to give me a break, I can always use a helping hand around my home... dusting, cleaning, laundry, dishes, meals... or coming to let me take a shower.... or get some homework done! That is what I need.
ANYWAYS!
God I love these blogs, that felt good... now moving on to something else to cleanse my mind!
So I am missing my Grandma.... She hasnt escaped my mind! I keep thinking, GOD IS SHE REALLY GONE? It just seems so impossible! The preacher was GREAT! He couldnt have performed a better funeral... his words were touching! It was weird to have all my family there and NOT her! I miss her. The preacher had everyone close there eyes and think of a great thought of her... and this was mine:
Well a couple :)
I remember my grandmother would have this little rubber green frog that layed on its on lily pad plate. Now that I am older, I know it must have been a sex gag... The frog had a big penis! BUT.... my grandmother of course didnt want me knowing that so she said it was his 3rd leg. AND I loved this frog. Now dont get my gram wrong, I dont think it was wrong AT ALL of her not to put the frog away... because I didnt know... and I seriously LOVED the frog. I thought it was sooooooo cool that he had 3 back legs! She said that EVERY time I came over I asked where frog was. Well I guess one time my grandmother, grandfather and I were all sitting around the living room, and gram had some church people come. And I kept on telling them about my Grams 3 legged frog, and asking her to show them! She was so embarrased... and WAS LIKE NO MEGAN! LOL LOL LOL!
Another memory that I had thought of while I was in the church with my eyes closed was....
My mother always let me take the bus to my grandmother after school. This one time when I got off the bus I didnt look both ways and ran across the street. My grandmother was SO FRIGHTNED that she spanked my butt.... and I cried! Of course I thought she was so mean for doing that!!!!! But she had told me a couple years back the story again, and she said that it had scared the life right out of her, and that she wouldnt know what to do if something had happened to me...
The priest than said "You should be thinking of these amazing memories of Charlene, and they shouldnt make you cry, they should bring a smile to your face!!!"
And these did!!!! My heart is so filled with memories from her! She was such an important person in my life. She was my Grandmother, I was her first grandchild!!!
I cannot tell you how much I miss her!!!
Well enough for tonight... I have to wake Aurora up in 30 minutes to give her, her meds.. . that sucks! She falls asleep, and I have to wake her up for her night dose. There is NO way around it. I tried to work out different times, but NO MATTER what its either the Tegretol or Keppra that I have to wake her up for, they have to be 2 hours apart from each other!!! SUCKS!!!!
For now... Goodnight!
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