Love Christmas/Hate Social Security

Random thoughts are running circles in my head right now. I hate it...Nothing specific comes to mind to blog about tonite. I have been very busy preparing gifts for teachers and kids in Carter's class. They are having their "Happy Birthday Jesus" party tomorrow. Christmas is pretty much my favorite time of year. It is so magical and special. Even though it is not as fun for me anymore, I absolutely love experiencing the magic of Santa through my kids. It is just so sweet. We also focus on of course the most important reason for the season...Baby Jesus. We have a cute nativity set, and Jesus is not put out. Then on Christmas we welcome him. I think it is a nice tradition we have started.

On another note, I have to go meet with someone at our local Social Security office tomorrow. I haven't blogged much about that whole situation...probably because it gets my blood boiling. Lets just say, we don't get crap. It doesn't matter that my son is disabled and has a life altering/threatening medical disorder. It also doesn't matter that we lost a whole income due to me staying home now. All that matters is the income we do have. The Gross income at that. Yea, well who gets even half of what the freakin Gross. Hmm, not us! Anyways, long story short. Way back in the beginning(as if it was so long ago) I applied for Social Security. Somehow, we were approved..got it for a few months, then the confusion started. They would pay one month, not the next and that went on for about 5 months. Then, the letter came saying they made a mistake and overpaid us and we owe the money back. Well, um I think it is pretty crappy that someone approved us, but now it is my responsibility to pay back everything? From day 1. Not fair. I didn't lie or cheat. Did everything that they said, sent every pay stub, and this is all just bull. If we don't qualify, then that is one thing...but don't expect me to pay back all the money. So after a year of me filing an appeal and reconsideration they now want me to present my case to a representative. Then if that doesn't work...court. Yay, fun stuff! I'm not giving up the fight on this though. I think our system is so unjust and unorganized.

OK, enough of that...

here is why I am fighting.

They melt my heart.

Hope your Christmas is Merry and Bright!

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Trust the process

So, today has been mentally taxing on me. From finishing up my Summer classes and final tests, to losing a dear, fellow PWS Mom friend, and then taking Cade to his first swim practice for the Special Olympics. I've shared extreme highs and extreme lows today, but as I unwind tonight I feel compelled to share this with whoever decides to read it. Some of you may know this about me, but most probably do not. I have always felt a strong attraction to working with those with special needs. It just always felt right and from a young age I remember looking up local jobs and volunteer opportunities..always searching for something to fulfill that desire. I was actually enrolled in college for Family and Consumer Science and was planning to go into Special Education. I had taken the Parapro assessment and actively looking for Para jobs. Then I became pregnant for Cade and life had other plans. Given my role now to Cade, isn't it ironic? OK, so here is an e-mail I dug up from my in...

Tired and Thankful

I am the parent of an amazing boy. He is 9. He is smart, funny, and happy. I am the parent of a child with Prader-Willi Syndrome... PWS is a complex developmental disability that results from a defect on the 15 th chromosome. Because of an abnormality in the area of the brain called the hypothalamus, these individuals face challenges in learning, behavior and controlling their appetite. The message of fullness never reaches their brain and they are always hungry. The intensity of their food drive can vary but all require support and understanding if/when they are exposed to food or they attempt to seek food. Food security must be considered and provided in all environments and at all times. While I am first Mom to Cade, just as importantly I am his advocate in every aspect of his life for his rare disorder. I am tired. Remaining humble and thankful for all of Cade's progress is so very hard in the midst of advocating. Some days I feel as I...

Happy 5th Birthday Cade!

I can't believe we are celebrating your 5th birthday today. It seems like just yesterday I was awaiting your arrival. Boy, what a whirlwind it has been since then. I have watched you go from a tiny, helpless newborn to a boy who already has his mind made up about just anything. You have taught our family so much about being strong and loving endlessly. You bring opportunities that I never imagined possible when I first held you in my arms. Life-long friendships have been made because of you. I will always encourage you, respect you, be your biggest fan, your advocate, and your supporter. I will always hope for a brighter, more accepting tomorrow. But above all, I will always love you for who you are.

Our So-Called Life.

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