Friday, June 15, 2012

The Good, The Bad, and Uglier Than Me....

  Sheesh! Where to start! The last week has been full of ups and downs. I guess I will start at the beginning, since thats the most logical place to begin....
Our neighbors and friends lost their lives tragically in a car accident  a few days ago. They would be celebrating their 50th anniversary in Sept, but God called them home to celebrate with him. I know blessings come in disguise, and please don't think ill of me, but the husband was just diagnosed with brain cancer, and was told he may not survive past 2 more weeks. My comfort is knowing they are still together. Yesterday was their viewing, it was very hard. The Mr. had his candies and his tea bag with him. Lj gave him a stuffed kitty since the Mr. gave LJ a kitty for his birthday. He also made them both a "love picture." They will be laid to rest with them. LJ bought the Mrs. a beautiful pink rose too, and gave the Mr. some candy. He loved when LJ would take him candy!  Hubs took it rather hard. The Mr. had become like a grandfather to hubs. Boy was he a pisser! We would be walking by and he would call out, "hey! Uglier than me!!!!!" To which hubs would respond, "hey to you uglier than me!" The Mr. always said, "don't you talk about my wife like that!" It was their thing.... LJ was a trooper thru it all. He was commenting on the Mr.'s nice sweater, and was so happy to see he had his candy with him. The Mrs. was laid to rest with her pack of smokes, and her bowling pin. Lj also thought that was awesome. Funny how well a 6 year old can handle death, compared to his two blubbering parents....They will be missed....Rest in Peace Mr. and Mrs. <3

In Loving Memory...

Here is what LJ wanted to give his friends to say goodbye. The family was gracious and kind in letting LJ put this  with their parents.

  Ok, enough tears on the computer, moving on....The good of our week started with getting LJ a pair of noise reduction ear muffs at Kmart. I took him grocery shopping with them, and he was WONDERFUL!!!!!! He has NEVER behaved that well in the store! HALLELUJAH!!! The next test was town. They worked great!!!! He crossed the street with only minimal fear the first time. On our way back across, he did great! No crying, no screaming, no covering his ears, and no throwing himself down in the street! Score one for momma!!!!!
  More good news this week. I received a letter from the Department of Education, Office of Civil Rights. Seems they WILL be pursuing the school for NOT testing Liam appropriately due to his diagnosis. Even if the school now backs down, and does do the testing, its still a score for us. LJ deserves the proper testing, and at least they know, this momma will NOT back down when it comes to the rights of her baby. Score 2 for momma :)
  We also got a call the LJ was chosen as a match to participate in the Genetic/Social Study at CAR in Philly.  I finished the interview and all the questionnaires, and we are awaiting a call back form a clinician. Hubs and I think its great that we can possibly help others by taking part in this study. Also, we get all the info and data they collect, which could be beneficial in our war with the school. The only invasive part will be LJ has to donate a tsp of blood. At first he was NOT happy. Then they told him he will receive a Toys R Us gift card, and he was all in!!
  And last but not least.....After 6 years of fighting with the courts and 2 different lawyers. After 6 years of different doctors and surgeons. After one reconstructive neck surgery, and the latest reconstructive spine surgery, we FINALLY have DISABLED in writing!!!! After being told by all these Dr's that he can't work, being given restrictions, and then going to court and being told he can work in a sewing factory (good luck finding one of those in our area). Well, hubs went for another recheck yesterday. He was told he is doing great despite how invasive the surgery was. He was also told, he CAN NOT work. Not only told, but they filled out the form from his caseworker. Marked him as DISABLED and eligible for SSI/SSD. Please keep us in your prayers as we forward all of this onto the courts. It has been a LONG 6 years, and dammit, we deserve this break!!!!
  Today is also Ryan Friday!!! Sunday took a well deserved break this week :) I still made a few because Ryan has become an integral part of my week. Hey, we all need a vice :D So here they are:

nothing wrong with that :)

never thought I'd utter these words, but BACK OFF MISTER!!!

We are taking LJ and his cousin to the sensory friendly version of Madagascar 3 tomorrow~Circus Afro, Circus Afro, Polka Dot, Polka Dot, AFRO!!!!! I can't wait!!! Hope you all have a wonderful weekend!

1 comment:

  1. Glad to hear about the good stuff, sorry about the sad and WOW congrats on the disability thing. I am in the midst of having social security look at my case and hope they move on it quicker than 6 years. Thank God it is FRIDAY!!