Thank You!!

Thank You All!! Kinser Cancelmo just helped us order this stroller and it tilts ,like karlis which we still have but is too small.. on ebay for only $700 with donations from you and Megs Fight For a Cure!! http://megsfightforacurejhd.com/ Very Excited Definetely makes a bad day better

stroller

Karli’s Angelversary

The 16th of February in 2010 you passed away Princess Karli Belle.. and 2 months after Daddy passed away to be with you, I miss you sooo much it hurts I love you sooooo much. One day when I get to see yous again you’ll probably be sick of me by the time i understand it’s really yous. Thank you God for my family allowing me to have them in my family and the family I have, even with the disease i’m blessed. I’m getting a stroller that’s just like yours, you never truly realize how brave until you understand yourself. You Princess Karli Belle Our Angel So Is Daddy, you’re so incredibly strong so strong not even I could handle how much you went through!! I am so proud of you!! and I miss you both 

jacey and karli (3)

Sick

i go from typing to unable to pick up my head and my bodys gotten from bad side to both bad sides so i’m not sure how long this typing thing is going to last, only God knows how long these viral things hitting me are going to be esp with my allergy to most medicine.. the goal is survival right weak as weak as weak is crazier and trapped inside at least mom gets to show her powers when it comes to transports yikes life sure is and has been a heck of a ride

Christmas

It’s been so hard handling the losses like an emptiness all around you and in you.. comfort in God and Jesus, pain of not having everyone here for Christmas. I came home from a trip through Walmart rare but great. Saddened by the baby that died from juvenile huntington’s disease, Elizabeth was 7 years old!!!! 7!!!! Beautiful Angel But So Many Prayers To Her Family It’s So Much I Don’t Know Whether To Be Angry About It Sad but i’ve been Both. 7 years old.

elizabeth (6)
Elizabeth

waking up

woke up went to the bathroom fall on the floor muscle seizure throw in lung stomach chest spasms then out of muscle seizure into just the shitty breathing trying to even itself out and then full out reg seizure that lasts over 20 min i was on the floor for over 40 minutes if this isn’t hell idk what is karli and daddy and sabrael arent here i’m going through this and still know i have more to look forward to plus abandonment of people who used to legit care and decided i wasnt worth it now im in bed hurting soo bad mentally and physically something i can’t wrap my head around i’ve been trying for over a year and it hurts even when i try to ignore it, how can you be so important and then not matter at all, how can you believe in all this stuff for them to shatter you anyways i don’t know how to try to figure it out myself anymore. I wish they cared about me as much as i love them. I don’t even know how to have friends anymore.

Forget

Mind keeps getting wiped from all this shi* it’s throwing at me good thing my Mom Jane’s here to remind me what I forget and keep me in bed or on the floor or couch etc( i do walk when i can though) so i don’t fall as much, otherwise i’d be even more crazy lol seizures hurt more when you find your more hurt later not that everything else doesn’t anyways.. makes me mad sad holding onto faith and walking the steps Jesus guides me on the path ahead of me i couldn’t do it otherwise this is scary as heck even though i’m pretty sure it’s a test on everyone it looks odd but feels different then it looks it’s confusing and cruel. I’m finding knowing others exist that did get through this comforting, sad though that they’re sick. Like 2 seizures a day lately weak or strong or in between it varies, one of the scariest is not knowing when it’ll actually kill me. Years, months, days.. so dam* confusing all of it ‘rare’ ugh