I know i havent written in a while but its been a very long roller coaster ride around here.My Husband lost his job again,my job ended in april and things have just been crazy around here. I thought once the chemo was done and Audrianna wasnt inpatient in the hospital all the time it would start to calm down around here but man was i wrong.People think that once your child is N.E.D.(no evidence of disease)that means your child is cured and nothing else is wrong with them and believe me I WISH THAT WAS TRUE!!! Audrianna is off chemo now and she is doing well but there are alot of other issues we are dealing with now like her hearing loss,the drop foot in her legs,the air space disease in her lungs and the biggest one the PTSD. My baby doesnt sleep because she is so afraid if she falls asleep she *has to goto god* and she fights falling asleep so she wont die. Everynight she asks *do i have to goto god tonight mommy* and i assure her that no god made her better because it wasnt her time to be with him yet and it wont be for a very long time but she doesnt believe me and without benadryl she wont sleep at all and then when she does sleep she has nightmares all night and wakes up crying alot,now her poor sister is doing the same thing,waking up with nightmares uugh so when i say we dont sleep...i mean WE DONT SLEEP!!!
It's very hard to be a happy functioning adult on 1-3 hrs asleep a night and sometimes the lack of sleep and depression really gets to me to the point all i want to do is lay down,but i get up and go because my kids need me.People also dont understand that, they cant imagine what you have to be depressed about,they say i should be smiling because she is doing better...well i am smiling on the outside where they can see...its just the inside that's slowly dying from fear and nobody realizes that fear unless they have lived it themselves....I FEAR EVERY SECOND OF EVERY DAY that the next test/scan she gets will come back that the cancer is attacking her tiny body again, i Fear everyday that when i tell her she doesnt have to goto god...im lying to her....i fear that she wont grow to be an adult, i wont see her have her first real boyfriend, i wont see her goto prom or graduate or become a wife/mother....i Fear these things everyday and believe me the fear is enough to eat you away from the inside out and make you crazy and if it wasnt for the anti-depression meds i take everyday, i Fear that the Fear would win and i would really lose my mind. Personally i think that every parent of a sick child has these same fears and i wish that the other people around us would try harder to understand this rather then treating us like we are bad/crazy people. Someday i hope this fear goes away and that just one day i can make it through a whole day without being afraid of losing my child and then Maybe i can be *Normal* again, but i doubt it. So today and everyday for the rest of my life i will fight to help find a cure for this Horrible disease in hopes that no other parent/grandparent/brother/sister has to go through life living with this FEAR.
Audrianna's Wish page was started to help her get her one wish to meet Hannah Montana and even though her wish never came true, we now use her page to help her and other kids fighting this disease. I advocate for every sick child i see and we goto every fundraiser we can manage to get to so we can support other families going through what we have gone through and i try to smile and tell them it will be ok you child can beat this they are strong, but in my heart i fear im wrong even though i hope im right. Everytime one of these babies loses there fight its like i lost one of my own children and the depression takes over for a bit till i pull myself back up and my husband tells me i shouldnt get attached but how can i not? These are beautiful children who didnt deserve anything bad to ever happen to them and yet they are slowly dying from this horrible disease called cancer,how can i not get attached and try to help....i cant!!!
People tell me i should give all this fear and anger up to GOD and let him help me heal, and my daughter believes in god and tells me she has seen him and his angels....BUT i get very angry and god and feel like he has let us all down so its very hard for me to let everything go and hope god fixes it...i mean where has good been for these babies? WHY hasnt he helped them? What the hell kind of plan can he have for them that lets them live in so much pain for so little time and leave behind there suffering families? I Know I know this is gonna anger people and im gonna get grief for this but its how i feel sorry!!!
Anyway back to Audrianna and sorry for my ramblings....right now audrianna is about to finish her first year of pre-school and her teacher thinks she should do another year before going to kindergarten but its up to me and im not sure, should i put her in Kindergarten or keep her in pre-school ugh how do i make this choice? Her Teacher thinks she needs more social skills and she would be overwhelmed in a whole day of K-Garten because she is so shy...but is being shy a reason to keep her back?? This is something i have to think about and talk to her teacher and the new school and see what everyone thinks and make a decision. Audrianna finally got her permenant hearing aides and she seems to be doing better with them in even if she doesnt always want to wear them, im hoping this will help with her speech which is another reason her teacher thinks she needs to stay back.I just want my beautiful baby to start everything on time and normal so she doesnt miss anything else in life, but i also dont want her to fall behind. Anybody have any opinions on this id like to hear them <3
This coming weekend the 22nd of May our family is going to be in Scranton for Red Carpet event to raise money for pediatric Cancer research and the girls get to wear fancy dresses and they are so excited and so am i, i cant wait to help educate people on how this disease affects everyone in a family, not just the child and how there is NO Money for reasearch to find a cure for our babies!!!! I want to thank everyone who is coming to this event and who has come to all the other events we have had and for supporting Audrianna and our Family. Much love to all of you!!!