We have been travelling on the stretched of I-40 too many times, especially going East Bound, and you would think we would be looking for alternative route to ease some of the boredom on the interstate stretch. There is not a lot of sightseeing to do for kids unless of course you like anything country. The good thing however, we are intentional on seeing some family members along the route. Our military son who used to be stationed in FT Gordon has been the place we consistently stay over, however, this year, he decided to spread his wings and living a full-pledge adult life by buying his 1st home … but … the home purchased is not in Georgia but Maryland. I suppose the military life really doesn’t give you much leverage on housing option.
The drive from Oklahoma City to Charlotte, NC is long and tiring. As hubby and I are driving through the stretch of I-40, we have to check our overall route and the first couple of days just driving made us so physically tired that we have to cut some of the route shorter.
Our 1st stop is seeing a family with Angelman Syndrome. For every year we do Angelman Syndrome Awareness, we are very intentional in meeting families with same diagnosis. Part of our struggle is that … this syndrome take so much physical and emotional toll on the caregivers. No one gets the exhaustion, the constant fatigue … sometimes, it feels like after 8 years with the syndrome, it is a different kind of exhaustion beyond human description. When we meet families sharing the same struggles as we do, it refreshes our soul, because truly, we feel like we aren’t alone. When we exchange the milestones of our kids, the little things that each of our children’s achievement seemed so monumental for us.
We met the Ravelo-Tecson family from the Angelman forum. A family of 5 and their youngest son, Nathaniel, who is 4 with Mutation, a different Angelman genome type. When we finally met them face-to-face, Natey, as the family calls him, is accompanied by Dad Mark, Mom JoAnne and big brother Jordan. Their middle child is in summer camp so we weren’t able to see her. As we met the family at a park … we shared pizza, drinks and fruits for lunch. The park was perfect, secluded and quaint. We camped in the pavilion. As we ate lunch, we talked about so many things. Since Nate is much younger than Matt, they’ve asked us … how did we do it with Matt?! Well, we can’t eloquently tell them how we did it because there is no easy way to say it except … tiring and exhausting. Nate is gaining momentum with his mobility. He climbs the stairs with assistance, he walks like he don’t have mobility issues and at 4 years old, you can tell he is so confident of his abilities because he explore his surroundings like he has no limitations. While Matt and Nate share the same love of water, Matt has gradually phased out on the polarity of water while with Nate, you can tell the water still excites him. He grabbed the bottle water, tried to open it and since he doesn’t have the fine motor skills developed to open with his hands, he was biting it and it tore the bottle cap enough to splash it on his face. You can hear him giggling and laughing. One thing about Angelman Syndrome — it only takes little effort to make them happy.
Our 2 hours meeting was very short, but it seemed we covered a lot of dialogue. One of the parting words we have exchanged was “the ability to multi-task and incorporate so many adaptive skills in one setting”. Example, if you are teaching the potty training skills, simultaneously teach the steps to become independent with toilet training — pull the pants down, put the toilet lid up, stand still, aim, flush, turn the faucet on, pump the soap and wash the hands. Introducing these steps might be exhausting, but once their brain has processed the same repetitive skills, in the long run, it will stick and they are able to retain the process. Just because they are not verbal doesn’t mean they don’t understand. With Matthew, we always presumed competence.
As we bade goodbye, Mike and I wished we could have stayed a little longer because we felt like the family we met for the very first time are our extended family. Matthew did not even have sensory issues meeting them because he thinks they are family members. I forgot to mention that Mark and JoAnne have the same cultural background as me — so it was an easy meet and greet.
Until we meet again — off we go to Maryland.
