Traveling a long stretch, with a special needs child can sometimes takes the fun out of traveling. Constant bathroom breaks, planning ideas to help with boredom, and mind you, bringing anything and everything just to have all the options available can be draining even before the actual trip. My hubby always complains about why I bring part of Matt’s playroom, part of our kitchen … Ok, he says it this way … why do we travel if we bring our home with us? I said, for the same reason that you are stressing the planning stages of our travel. I always joke ….how about I drive and you do the planning? Well, I promise you I’m not “that” horrible of a driver, but if I touch his toys {truck and the camper}, that would be how World War III starts.
Driving 9 hours straight from Arizona to Long Beach California, there’s bound to create tension, random conversation to be discussed, and oh, definitely there’ll be a screaming kid saying “are we there yet?”. Not really audible talk of are we there yet ….mainly Matt screaming his boredom out. You better be taking his “expression of boredom” seriously, pronto, or else WW3 ensued. Matt would be smothering Midnight {our Schnauzer who tags along during our trip}, then Mid growls at Matt, then Matt starts crying, then Mike yells at the dog, then me yelling at Mike for not paying attention to the road.
People … Let that last paragraph stay in your head for a bit and picture that scenario playing for 8 hours ????
No matter how much trying and challenging it is … our traveling have had so much part of binding our family together. A family that travels together stays together (only because no one has died in the bickering process). Long stretch of driving can also bring random picture of favorite happenings on the road.
The following day, we have the chance to meet up with Filipino family who have a child with rare diagnosis. At first, they were clinically diagnosed with Angelman Syndrome, and few years back, they finally got their genetic testing. Aya, a bubbly 21 years old is diagnosed with Mabry Syndrome. She share some of Matthew’s characteristics — very strong, and with a happy disposition. She also has limited speech but she is very expressive like Matt. The 4 hours visit might not be long, but in the world of rare diagnosis, this seemed like an eon of time-frame. Both families were so surprised because both kids hit it off. It was funny seeing them playing musical chair as Aya, was territorial and wanted to check each chair before she settled with one.
The Lorenzana family came from the Philippines, same native country I grew up with and they now resides in Long Beach, California. They were very hospitable, a trait that most Filipinos share in common. We haven’t met the family outside the Angelman Syndrome forum. Tina, Aya’s mother and I spoke the same Filipino dialect, we hit it off instantly. During this Awareness, though we are cautious due to Covid, we were intentional in meeting the family. When we finally met face-to-face, it was as though we have been friends for so long, and our kids have known each other for quite awhile. Trust me when I say it is hard to find friends when your priorities are focused heavily on your family, your livelihood and not to mention, ensuring that Matt’s needs are still prioritized.
As we exchanged stories of each of our journeys over comfort foods, it is a wonderful feeling to know that “we aren’t alone in our journey”. Aya was conversing with us and Mom Tina has taught her few words in our native tongue. In their household, just like ours, we’ve been conversing to our children using other languages. For me, it appeared that Matt can actually pick up my native tongue’s word quicker than English. When it was time for us to say our goodbyes, Matt was very sad and was crying because he didn’t want to leave. When we finally got back to the campground, Matt was looking for Aya {he audibly say her name}, sign for friend. This is very rare for us.
