I have been in the US for 26 years, lived here a lot longer than I have lived in my native country the Phillipines. Every time my hubby and I talked about the places we’ve visited in the US, he always told me he wanted to see Colorado while I wanted to visit Mt. Rushmore.
We actually have lots of touristy spots we wanted to visit in Colorado Springs but we were putting some realistic spins on what our Angel can handle. Pike’s Peak and Gardens of the Gods {… and I told Mike, this is non-negotiable}”. Well, the little guy couldn’t agree more.
In 6 years, this part of our struggle raising an Angelman child has always been the hardest transparency we can share with friends and family. Kind people always reassures us that they “empathize” … but inasmuch as we are thankful for the understanding of people … empathy can’t be fully expressed unless you live with that struggle. Even within our Angelman Community, we all have commonalities but our struggles are never alike!! Others would love to hear the first word of their child, while others would love to see their child walking. Some would love to have decent sleep again, while some would love to see their child be independent. Some would want to have fair share of socialization, while some lost friends/families in the process. To all of us with Angelman children, these struggles can either be in the highest spectrum while some are borderline.
We went all the way to the Pike’s Peak Summit and with the temp/air changes, Matt was very unfriendly, very needy, very possessive — I can’t even get closer to his Dad without him screaming. Matt started screaming at people when he sees that they are staring at us. With Matt’s sensory overload and over stimulation, it is hitting a toll on our stress level. Within 10 minutes in the Summit, we were all so restless we only took 2 location pictures and we were dashing to the shuttle line. Have you ever seen those perfect pictures people upload on Facebook and Instagram? Ours are never close to better. As we request people to take our pictures, we are like: DISCLAIMER: Just click that button as many times and one pic will eventually be good!!! One thing Matt will tolerate is — we have to find a “pretty” photographer or else he will never cooperate. Once we have the ideal stranger, we only have this tiny window of “cheese … click” then wait for it … scream!!!! We left as fast as we could and head back to our campground. By the time we opened the camper door, he started puking … and DAY 2 of adventure is in the panic mode. After 3 hours, semi-rested, and the sense of being in routine brought our happy Angel back {well … almost 🙂 }. Normally, when he starts eating good, that is when we know he is back!
After we ate, we visited Gardens of the Gods, and because it was so late in the day — we went, we saw, we said goodbye. Did we spread #ASAwareness today? Yes we did! We spoked to family of four, from FL, who sat behind us in the van going to and from the Summit. We are also hoping that the “Matthew shirt” peaks people’s curiosity!
2 Responses
Hi, Matthew and family! My sister and I were the lucky “pretty” strange girls who were able to take your family photo at the top of Pikes Peak. Her and I have been endlessly searching in hopes of coming across a way to contact you and let you know that we were touched by Matthew, his story, and the trip that you all are making to spread awareness. He left a pretty big mark on our trip that day. We just wanted to reach out and let you know that we are thinking of you on your travels and hope to hear back soon!
Love,
Lexie Shaw & Lauren Blassingame of Topeka, KS
Thank you so very much Lexie and Lauren. Your comment is the very reason why we share our journey to as many as we can reach. It is hard to raise a kid with special needs and people like you who makes it a little bearable for us to do “normal, typical things” that gives us hope that one day, Matthew will experience the inclusion from every strangers. We have to admit though, he has his preference 🙂