Averie Elizabeth

Averie Elizabeth

Who is Averie?

Averie passed away Sunday November 13th at 3:33am due to complications of her mitochondrial disorder. My beautiful princess is finally healed and in heaven with her brother :)

Averie is a crazy, beautiful, smart energetic 7 year old who keeps everyone on their toes! Averie has been fighting Alpers since her first seizure in 2004 at the age of 4. Her older brother passed away from Alpers when she was just 1. Just recently she became a big sister for the first time! Averie is strong willed and stubborn...I believe that's what keeps her going on the days her disorder creates obstacles for her. She is my special little girl who I love one cow, two moons and three fences big!















Thursday, July 15, 2010

FED UP!

I started to post this in my Facebook status, but #1 it was too long and #2 this is probably a better forum and people can choose to read it or not. I am writing it tho because this IS part of what Averie is dealing with. To gloss over it and pretend its not there would be a disservice to other families who might be going thru the same thing...so below is my rant...take it as you will...

I don't fucking get it! How is it possible to take care of a little girl who needs $100+ in meds/vitamins not covered by insurance a month when her father thinks that LESS than $200 in child support is all he needs to pay???? You have to be kidding me! I have to find a way to buy Averie's CoQ10 because her father wont! He thinks all her medical should come out of child support...they are two separate things...medical support is in its own category! I can't wait till he gets his official orders...even then he'll only pay the minimum when clearly it is going to take more than that to take care of Averie! Right now I think we are on the cheap side of meeting her needs...I can only for see the costs going UP UP UP!

It might actually require him working harder than he is...although then I guess that won't leave as much time for dance lessons and what not...To add to all of this he is constantly telling me I am LAZY for not having found a job yet( I'd like to see how easy it is for him after 8 years of being a stay at home mom).... then he turns around and tells me he doesn't want Averie in Public school or daycare because of her MEDICAL condition!...how am I suppose to work then? Ugh! ...never mind that I am going to have to balance it all...full time school and paying for Averie to have a place to live, food, school supplies.....Oh yes...I'm so very lazy...

I wish he could just see that this whole thing is about Averie...just Averie and only Averie...I can give a rats ass if I have money for me...I really don't care, but when it comes to my daughter she deserves to be taken care of properly.

So there...that's my rant...maybe not my best writing to date, but sometimes anger does that...my mind is racing because I am trying to make this all work. Its so sad that millions of women are dealing with this exact same thing every day! Where are the real men who make sacrifices and work hard for their families? Are they out there!?

Thursday, June 24, 2010

Crazy wild madness!


When did I last write a post? FOREVER AGO!!! Little Miss Averie and I have been go go go for weeks now!

We took a trip to North Idaho where Averie spent a week on a farm taking care of animals, riding a horse, getting to play with little kids. and learning to shift a pickup truck! It was so fun! Averie did awesome! The week started off a bit rough because Averie was intimidated by all the new people. She had several days were she didn't want anyone to "look" at her. She would hide her face and pout and cry if anyone talked to her. All of us just persistanly engaged her and slowly but surely she came out of her shell. I was like a flower blooming! She became chatty and her little comedian side came out. She forgot to hide anymore and soon was playing without hesitation! It was wonderful to watch and it gives me hope that school will be successful, even if it just takes some coaxing!


After our trip to Idaho we came back home and Averie finished up her last week of school! She graduated kindergarten with flying colors and was very proud to show me her diploma. It was adorable! Now I just have to prepare MYSELF to release her into the realm of public school! woo eee!


You think I would have been smart and given myself a break, but we took off on another road trip, this time to Southern Idaho. We were both in my cousins wedding, Averie, a flower girl and me, the maid of honor. I noticed it didn't take Averie nearly as long to adjust to all the new people this time and she was out socializing relatively quickly! I definitely think all this as been great for her confidence! She even bravely walked down the aisle with me during the wedding and didn't cry or complain ( if you know Averie, you know that she has a stubborn streak the size of the Mississippi! ).


All in all the whole month has been fantastic! Averie has been strong and healthy the whole time! No noticeable tremors in her hands and NO seizures! The only problem she has is a hole in her mouth from her FIRST lost tooth! My little girl is getting soooooo big!