What would you say?

My Oh so lovely fellow PWS mom, Ali Shenk posted this very powerful video that I wanted to share.

What would you tell yourself on the day you received your child's diagnosis?

I remember that day so well. It was a phone call I had been anticipating for over a week as we patiently(yeah right) waited for the results. Cade's NICU doctor called and asked if Jake was home...he said to put him on speaker phone so he could tell both of us the results. I didn't though, I wasn't ready for Jake to hear it. I felt as though I knew the results already. I had done so much research, I was ready to accept it. For Jake things weren't that easy. This video hits home. What a difference 2 years has made.

If I could go back to that day, I would reflect on all these messages whole heartedly. The future was such a scary thought...and still is at times. That is besides the point. I have learned to live for today and cherish all of the unconditional love this little guy has brought to my family.

Here is what these parents would go back and tell themselves...

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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...

Hungry.

It has been a loooong time since I've written, but its time. I need an outlet and the world needs awareness. If you are new here or don't know by now my son, Cade, who is now 7 (almost 8) is a fun, loving, genuine boy who happens to have been born with a rare genetic disorder. Prader-Willi Syndrome. See below from www.fpwr.org if you are unaware of exactly what Prader-Willi Syndrome is... The symptoms of Prader-Willi syndrome are due to dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including regulating hunger and satiety, body temperature, pain, sleep-wake balance, fluid balance, emotions, and fertility. An unregulated appetite and easy weight gain characterize the later stages of PWS. These features most commonly begin between ages 3 and 8 years old, but are variable in onset and intensity. Individuals with PWS lack normal hunger and sa...

Our So-Called Life.

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