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 satiety cues. They usually are not able to control their food intake and will overeat if not closely monitored. Food seeking behaviors are very common. In addition, the metabolic rate of persons with PWS is lower than normal. Left untreated, this combination of problems leads to morbid obesity and its many complications.

In addition to obesity, a variety of other symptoms can be associated with Prader-Willi syndrome. Individuals usually exhibit cognitive challenges, with measured IQs ranging from low normal to moderate intellectual disability. Those with normal IQs usually exhibit learning disabilities. Other issues may include growth hormone deficiency/short stature, small hands and feet, scoliosis, sleep disturbances with excessive daytime sleepiness, high pain threshold, speech apraxia/dyspraxia, and infertility. Behavioral difficulties may include obsessive-compulsive symptoms, skin picking, and difficulty controlling emotions. Adults with PWS are at increased risk for mental illness. PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals.

So, remember I said Cade is almost 8? Yes. I don't know where the time has went but he reminds me every day now that he will be 8 on May 14th and here we are toggling between trading our sweet, loving, easy going boy for a growing, attitude-giving, HUNGRY..but still sweet, loving, and sometimes easy going boy. 

Yesterday, we had a fun-filled evening planned at a local festival. It was to raise money for Cade's wonderful little school's community and for future plans of building a bigger and better school. Cade talked about it all week leading up to the day. He was super duper excited to attend! 

We arrived shortly before supper time, planned correctly so we could eat there. Cade played a couple games, found friends, and then discovered the food...which was OK, because it was about time to eat anyways. He ate supper, then almost immediately wanted more food. At events like this, with food constantly in your face..it is becoming very hard for Cade to focus on anything else, but food. So, he became unhappy and anxiety arose and he was ready to go. My Mom took him home with her so he could unwind and take his mind off of the food. All was good, and although we missed his presence, we knew he was having a better time in his safe place. Where everything flows accordingly and there is no unknown. Home. We don't want to isolate him. That never sits well with me. What do we do? Force him to stay in an environment that he is not happy in(for that current moment) or let him leave with someone? 

Fast-Forward to the end of the night when we are all together again and Cade sees his brother and sister's prizes from the games they played, their stories from the night, watching their music teacher on stage, seeing teachers and friends, etc.....

The tears start. He proclaims that it isn't fair that he didn't get any prizes, or get to see the bands, or his teacher, or his friends. My heart broke. It really isn't fair...This syndrome has robbed him of so much. At the time he left the festival, he didn't realize what that would entail. Now, that he is getting older he realizes that this whole being hungry all the time thing is getting in the way more often than not now and it makes him mad. 

So, as he laid in bed crying and I laid there with him, not knowing the right words to say to comfort him..I realize I've gotten too comfortable for too long where we are at. It has been easy, so to speak. The truth is it has been far from easy, but we found our normal and things flowed fairly smoothly for some time now. It is time to find our new, normal now. 

Cade has been aware of food for a very long time now. I just feel like it is interfering with what he wants to do and what his family wants to do more and more now. And HE is aware of that. It is not quite as easy to re-direct him. Some days are better than others. Yesterday sucked, but today he has already woke up happy as can be. We all know that can change with a snap of the fingers multiple times throughout one day, but for now he's happy..so we are all happy. 

We will need schedules and expectations set for days where there are special events or unusual days. We will need our friends and family to understand the way Cade works and help us set him up for only success and no failures. We will need your support and understanding more than anything. 

Thanks for reading and understanding. If you are a close part of our lives, then I know you'll understand and walk this walk with us.