Driving from SD to MN seemed like driving a road to infinity and beyond. Nine hours plus an hour of time change is not something hard to do, we’ve done it many times, but this day felt like I could use a time machine, a teleportation device or any witchery ability so we can be in MN fast.
Mike wasn’t feeling too well the day of and was running a fever the night before we left because his leg was swollen up. He has been taking antibiotics as we’ve gotten his leg checked at an urgent care before we left Oklahoma. As we were driving, I’ve contemplated to cut this trip short. Inasmuch as the Awareness is something very important to me, I couldn’t gamble my family’s well-being while on the road. Knowing my husband, he wore his superhero cape just to make me feel at ease.
My mind is in its usual beast mode of thinking, recalibrating every nano seconds worrying about the long drive, thinking about other not-so-important things. Surprisingly, the long drive wasn’t an issue for Matthew. He was in it for the long drive…laughing, playing and keeping himself occupied. Every time we travel, we bring a little section of our house with us … the kitchen’s pantry supply of snacks, drinks and all things-not-so-healthy… the playroom’s toy story and all things-good-for fine motor skills. We would hear an occasional scream because we lost data connectivity to his iPad. Even with how good Matt was handling the travel …my mind was a wrecked over my hubby’s condition. While on the road, I’m playing “who wants to be a millionaire” and I’m stuck in one question worth that much and I only have one helpline to use … “text a friend”. I have so many nurse friends but I knew Princess was the one who can instantaneously respond back. I showed her the pic of Mike’s leg and she insisted it has to be seen now!
Our MN Angel Dad Mike have been a great friend for several years now and when I told him we are doing this Awareness, he jumped on board and planned the get together for MN location if we ever get to the area. We planned for 5:30, then pushed to 6:30 and we didn’t even get to the Campground until 7:00. Although my mind is so restless … GOD’s faithfulness has been so evident on this trip. Mike Mendiola took care of everything, and an Angel Mom Sierra, who happened to be a nurse checked on my hubby and urged him to go to ER now. Angel Mom Sara, who drove 1 1/2 hours away helped set up things. Moment like this is what’s great about our AS COMMUNITY. We were strangers who became instant families.I was supposed to treat them with Filipino cuisine and because we were late and we didn’t realized we ran out of propane. Mike M brought my hubby to ER, the Alex/Sierra jumped in and ordered Pizza. Instead of grilling hotdogs, we deep fried them. We laid out the camping mat, brought out all the toys, got the bubble machine and let it do its magic with the kids. We made the sweetest lemonade out of our lemon.
Mike M popped the back of his van, let Cayden situated as though he was about to watch a drive-in movie. Cayden is handsome, smiling a lot but a bit shy. I don’t know if it was because there were so many commotions, new things or sensory overload? Cayden was interactive but was doing it from his comfort zone. I came to see him and he was hugging me and being playful.
Mason is 18, so strong, very independent, very friendly. As I greeted him, he stood up quickly to give me a hug and gave Mom Sara a jumpstart on her heart rate. She was afraid Mason will knocked me out. You see, all Angelman, although they may appear very fragile, they have the strength of a bear … what Sara did is something that just comes out naturally for all AS parents.
Rose, with del+ gnome, one of Alex & Sierra’s 4 children. She butt scoots around the camper mat, socializing the best that she can, tried to stand up, and when I reached to assist her, she was walking, pushing my hand as though she was saying …”lady, I got this”. I asked Sierra are you sure she has AS? She is confidently feisty!
As we parents were exchanging information and stories, it dawned on me that we have so much to talk about. We have commonalities because of AS, but each of our AS Kids are so totally different from each other. Mason, Cayden, Matt and Rose have that same facial AS feature, that same smile … but they are so independently very different just like you and me.
