by kaleidegirl

have i become a night person again now that i only sleep from 10pm to 4am? i mean every night for weeks now, sometimes not even that much. (hospitals are the worst place to get rest and feel better.)

well, it gives me time to really dive into my blog and get so much out of my head that is causing some serious thought pollution. maybe if i say the nonsense things in my head here i can stop talking so much. i really do talk too much and i just don’t have the oxygen reserves for being that annoying. i have to be careful when i need a good cry because that really uses up a lot of oxygen. i feel like i have to schedule it in during a time i will be sitting for a long time.

i’m sure it is no surprise at all that going through this process of being tested and evaluated to get on the transplant list comes with a lot of emotions. up and downs, fear, hope…i was shocked at myself when i found i was actually excited. for a little while one day i was just excited about the whole thing. this is really starting to happen. i might actually breathe on my own again someday.

you know what? i’m sitting here typing this, wanting to share this experience with anyone who cares to be a part of it or follow me along and i am suddenly slammed into a wall of self loathing. does anyone really give a fuck about the little details and stages i’m going through? i’m not doing this to help anyone. if it does then that is fantastic but i won’t lie. i’m doing this for me. i’m not afraid of oblivion but if i can leave something of myself behind i want to do that. i want my grand kids to have this to read one day and maybe feel like they know me a little better. no, i’m not being morbid and assuming i won’t live to meet them. i’m looking further ahead to when they are growing into adults after i am gone. when their memories of me are things like high school graduation or birthday parties where grandma was always taking pictures or just always there for every milestone……that train of thought is carrying some heavy emotional cars of change. i remember a time when i was sure i wouldn’t have to live to see the age of 21 and then my girl came to keep me here and i remember being sure that the universe would punish me if i dared to enjoy anything in life after trying to leave it and then recently when i finally decided it was time to embrace this wonderful life the universe rewarded me with…my mistake….only months after trying to really enjoy my life i was told it was very likely being cut short, an expiration date was looming and i felt like i deserved it. suddenly a future is something i want more than almost anything for the first time in my life. i want to grow old and be a grandmother and maybe someday see things and do things.

it sounds dramatic, and in a way it actually is, but when your life is on the fence it is really hard to not think about dying and just live each day one at a time and embrace every moment. you want to. you know you should. you try to. you regret any wasted day or missed opportunity. regret becomes your arch nemesis. the last thing you want is to have regrets on your deathbed.

so this is how my journey begins of course.


my mind is flooding with all that i’ve lost and all that i’ve missed and every little moment i should have savored. every rain i watched from inside. every letter i was too lazy to write.

what a terrible waste. i can’t blame the universe for this punishment. it gave me life. it gave me luck, opportunity and the resources to survive a horrible childhood. it gave me my girl and my husband. oh my husband. if ever someone could make up for mistakes against another person, he has done it, over and over. one of my hardest struggles is showing him nothing but gratitude, kindness, love and patience. i have no idea why, i question it several times a day, no really, literally several times a day, why does this man love me and why did the universe gift him to me??

so that is where i am this morning apparently. doesn’t take long to drag out the guilt. i need to get another cup of coffee and get into a better head space. he’s making blueberry pancakes and bacon for breakfast. (i think one of the days he was visiting at the hospital i mentioned how much i like blueberry pancakes, i think it was the day he was helping me eat some plain ones with peanut butter and syrup on them, he cut them up and even fed me a few bites, stupid IV’s, spoiled wife) we will probably sit at the coffee table watching his program eating breakfast.

maybe i will work on organizing my hair stuffs with the storage thing he got for me while i was in hospital. i need to make hair for world goth day. my friend is going to sell my stuff for me because i can’t be there.

i don’t want to wake him so i may just browse the google for hair ideas.