As we waited for the sunset, we couldn’t bend away from being awestruck of the natural wonder Grand Canyon has to offer. Very long day but was really worth it. It didn’t hurt that we camped in a campground nestled in the heart of Grand Canyon Park. When we wanted to give our little guy a break from the heat of the sun, we were within few minutes from the campground. After discovering the magnificent beauty of the Grand Canyon, our bodies were ready to retire from seeking nature and rediscover the beauty of the bed sheets and pillows.
The silence inside our camper was invigorating … no Wi-Fi and no cellphone signals. Though the stillness of the evening was what we needed, it also brought so many unwanted thoughts about how we go about spreading awareness in the “new normal”. As we watched our Angel sleeping so soundly, with his soft breathing faintly cracking a small snore in the background, we can’t help but be scared of the potential risk and exposure. We are very cautious with who we talked to, we wear mask, and we always have sanitizer readily available.
The next morning Matt woke up and was so upset that he didn’t have Wi-Fi. We kept explaining that no one in the park had Wi-Fi because no one had cell service. We completely forgot that one of our sponsors was a company that makes a device to improve your cell phone signal. It is connected to the truck, so we only use it when driving, so the hubby decided to start the truck to see if the WeBoost Drive Reach that that WeBoost donated would help out. IT WORKED! Not only did we get two bars but Matt’s device was able to connect to our hotspot and he was a happy camper. The families all around us asked us how we were getting service, so we told them. When we had the truck running, they all were able to get 2-3 bars of service too. Needless to say, they all told us that they were going to be buying a WeBoost device. We don’t do a lot of marketing or anything but we definitely can say that this thing is a life saver.
Now that we were the saviors for internet, we met families camping near us. Matt is very social, and he doesn’t like wear a mask. It is a sensory overload. He doesn’t have concept of what it is to exercise social distancing. He would be hugging and holding everyone’s hands, putting everything that gets his attention into his mouth — and no matter how much we convey about the pandemic, he hears from one ear and leave the other. We wrapped up our Grand Canyon excursion with so much awe of the wonder it brings yet moving on with Awareness a little careful.
One of the biggest questions we get, even from people that view the blog, is: “What is Angelman syndrome?” With that in mind we put up the “What is AS” page, but we would like to provide additional information below so that it can easily be found in multiple areas.
Angelman Syndrome {AS} — is a rare genetic and neurological disorder characterized by severe developmental delay and learning disabilities; absence or near absence of speech; inability to coordinate voluntary movements (ataxia); tremulousness with jerky movements of the arms and legs and a distinct behavioral pattern characterized by a happy disposition and unprovoked episodes of laughter and smiling.
This is what makes AS so complex because there are 4 Genotypes of AS, and each child with AS diagnosis does not have the same trigger of symptoms. Even children diagnosed in the same genome have variances and spectrums of issues. However complex the needs, these are the most common that all AS shares … (1) Seizures (2) Lack of Sleep (3) Lack of Speech.
The reason our family has embarked on #ASAwareness is because of how rare the diagnosis. AS is estimated to be approximately 1 in 12,000-20,000 people in the general population. However, many cases may go undiagnosed making it difficult to determine the disorder’s prevalence.
Be sure to check out What is Angelman Syndrome and Genetics of AS for both are very informative.