Thank You God and Jesus!!

Thank you so much God and Jesus for loving us so much even through everything we put yous through you died for us, and you sent your only son to die for us and you’s are absolutely amazing. Amen


Good and Bad Days

I’ve had a few better days but awoke today in seizures, seizures most the day sleeping a lot in it i managed to shower tonight though, and lilli made the popsicle stick people for me for my village she is so advanced she’s writing and drawing so well she’s growing up too fast jean morack sent me an alice in wonderland book pouch it’s so cool my alice book even fits in it perfect. thank you!! it’s like my body just goes to sleep i go to sleep and wake up and sleep it’s so weird.


day 5 seizures the disease is completely fine with handing them out probably because it keeps snowing outside yet i cant even always fully support my body weight at least it’s a stroller and bed and not the ground!! thank you for that it just feels like everything keeps going down hill with this body ugh muscle seizures and lung spasms jumping in now i just try hour for hour seizures are aweful for jhd progression

Too Many Seizures

Too many real seizures good thing I’m unconscious bad things extreme nausea and sleep sleep goodnight Now on day 3 with Dottie helping me


I Like This Picture

jaceys jhd journey

it’s even got mini max and my rollercoaster picture on it and dottie and sparkle and dottie and wolf hat and new stroller and medical shirt i got and butterflies everyone sent me and collage book i made of the jhdkids a long while ago it doesn’t have my cheshire cat shirt though or chesh in it i think

On the contrary

it hurts when people can go do things i can’t or used to be able to, it’s easy to get upset with the people involved in meeting and doing activities, being left behind and sick is really shitty. noone truly knows how much it hurts to feel so.. unwanted comes up as you see it as you being unimportant.. you’re brain can’t fully understand the differences stick to reasons why you like being here and not outĀ  like a great new book you want to listen to and can’t if you leave, it still sucks and is hard to understand but at least when you’re doing something you want to stay home for your more content ( the weird thing is even if they’re by you or anything of relevance you have too much anxiety or/and inability to communicate in one way then another.. like typing i can type but can’t orally or mentally act outside of typing it out is so much harder, you’re trapped), nothing can truly make up any of it because it’s all too complex and a small piece of everything of everything!!


This is your lifeĀ 

There’s been alot of seizures and pain knots from the way I position and being tired but can’t sleep fully leads to more seizures also when you’re body is waking up, the stomach aches from jhd are so specific you know it’s the same, I spent a lot of time sleeping in recliners couches floors so hard to have to use the bed early on in this disease I’ve learned to lay flat straight arms at your side not moveing even if you feel you need to react to the pain don’t you’ll regret it later I know it’s close to the high pain scale but remember you’d rather go forward then backward because of everything you’ve handled it’s not okay then it’s not the end and it’s the small moments that make you glad you were alive for