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


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!?


Beth said...

I hear ya! Right now Paige's dad isn't paying child support because I was trying to go without it, but now that she's in a school (that I have to pay for) money is becoming an issue. He things he's doing me a favor by going to Target when he visits and getting some pants and shirts for her for school.

I'm with you, where are the real men?!

don't need one said...
This comment has been removed by a blog administrator.
*JSJJ Long* said...

I'll be praying for your situation and little Averie. She is so sweet & loving. Can't wait to see you guys again. Sorry things are hard right now. Hopefully it'll all get ironed out soon, for Averie's sake. Know that you have support of friends and family and good people. Pray hard & just trust that this will all come full circle and, for whatever reason, it's all in yours and Averie's plan for life. Can't wait to see you again soon!! :)