I’m 23 but like a peer to me one and a half year old niece except i eat softer foods then her so im younger but older in different ways i can color watch kids movies alice in wonderland on my wall i stick to stick figures I can’t draw my age level I can’t eat normal even in restaurants if i can sit through any i have seizures too much she can even make more sounds with her mouth then me when it comes to brrrr or other mouth abilities like la la la 

 It sucks having to be the one left home all the time with my mom, if i get to a restaurant I don’t even know if I could eat from it i take my meds at night in a milkshake so pushing two in a day scary and they can’t help me so being stuck attacking or in my body and even in ridiculous stunt positions i want to do so much i cant even play games through the tv they need to be handheld or i get more seizures I don’t know when I’ll be able to use what at any time it could change no driving having my own little girl half my family passed away I know I’m on the not escapable progression cant travel etc house bound scared relieved depressed worried i get so much pain and even my anxiety is worse in jhd it makes me sick for no reason im trapped the only way is walking forward and its hard wondering did i live my life right i need a handbook a list of what to do I know god and jesus are there and yet they catch me over and over again and still its sooo hard even gatorade has acid water bedtime milkshake sometime gatorade nothing else.. 

Applesauce raviolis pancakes in syrup mashed potatoes pumpkin pie im still blessed on what i can eat because I know what i can only eat on bad days I picture myself gone and it hurts so bad because I know what loss is like and im scared of change everyday all those tests and er visits when hospital lights make me sick due to photosensitivity so i feel flu the whole time throwing up and it’s so hard thinking it’s also not escapable so much behind hopefully ahead but also hopefully not ahead you know what i mean am i okay how am i.. Im still alive and that has to be good enough I can’t even make videos like i used to i made one of the jhdkids and im so blessed i was able to because i cant even use my camcorder anymore only camera when i can im doing what i love that i can still do even if it doesn’t get far the losses are hard but when you’re tip toeing on an electric wire comfortable and doing what that i can still do is pretty good i get watched on a baby monitor and want to be for safety during the night i had to give up books besides childrens and games that are fast for me and too hard I’ve lived preparing for when i get too sick

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