30 Days til Race Day!

The time is here to transition from Early Steps to the school system for Cade. The thought of everything is making my head spin. Yesterday we received Cade's evaluation report, which showed what services he would qualify for and then today we got the letter in with our first IEP date. EEk! I am prepared to set him up for success and nothing less!

I can't believe this little guy will be 3 years old in less than a month! So Bittersweet.

I feel so blessed to see him prosper and grow from the once weak and helpless baby he was before. But, also with each passing year I know it brings on more challenges and PWS rears its ugly head further and further. I hate the fact that he is getting more and more defiant, needing strict structure and getting hungrier. :(

But, there are so many more things that I absolutely LOVE.

I want Cade's future to be filled with happiness and laughter...not pain and hunger. These are reasons why I raise money for research. I know the research is new and active and the funds are directly being used for exactly what I want. To eliminate the challenges of Prader-Willi Syndrome through the advancement of research.

I encourage all of my readers, family, and friends to visit onesmallstep.fpwr.org/dw/walking/location/265

This is our Houma location page where you can Register or Donate.

With just 30 days left til race day, May 18th...our thermometer has hit $10,000!

I am so thankful for the family, friends, and community supporters that are on board! Without our great sponsors and loved ones that believe in something bigger, we wouldn't be where we are now.

So many PWS families coming together for one common thing is a beautiful thing.

TOGETHER WE CAN MAKE A DIFFERENCE!

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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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