April 17, 2013
Yesterday I finally had a chance to visit my son Dustin, who lives in Santa Cruz. I know this might sound silly but it’s taken more than two years for me to find time to spend part of a day with him (it’s only a 40 minute drive from my home). Things just kept popping up: wheelchair appointments, doctor appointments, not enough time to make the drive to and from before I’d need to be home to meet a bus, someone was on vacation ~ and the list could go on forever. However, yesterday I made it!
I don’t know about Dustin, but I know I can say I had a great visit and a good burger for lunch. He talked and talked about recent discoveries in his life – finding members of his birth family. An aunt found him and shared her findings with his grandmother. They’ve sent pictures back and forth. Maybe one day they can meet in person. I’d love to help him do that but right now I just don’t have the time.
Dustin decided he should sit in the front and give me directions. So, we transferred him from his wheelchair to the seat, put the ramp down and rolled his chair in behind us. I could sense his pride of knowing where to go and giving me directions. His speech is hard to understand (even for a person with normal hearing) but he used his spastic, one-handed signs to make clear where I was supposed to turn.
Our relationship hasn’t always been positive. He came with many problems, things I’d had no exposure to before meeting him. He’d been born an active child until he experienced internal brain trauma. The result of his trauma left him with poorly controlled seizures, unable to sit, walk, eat or speak. It was difficult to know if he understood anything as he had a blank stare much of the time. However, one day he got me to understand he wanted the bacon I had for breakfast. So, bacon it was-crispy, salty bacon.
Dustin continued to make slow improvements over time – he can help some with his transfers, has some use of his left hand to feed himself (he’s learned to eat again and his feeding tube has been removed), play video games and drive a power wheelchair. He has regained speech, although it’s mostly unclear to people who don’t know him. And like yesterday, he used his one-handed signs to help me out.
Dustin became very social during his middle and high school years. With many dedicated teachers, he was able to graduate from high school.
Dustin definitely has made some choices that I never approved of, and still have a hard time accepting. But he seems to be happy, friendly and a survivor. He has a house, a cat and caregivers who help him out. And most of all, I felt so relaxed and happy to be with him yesterday. I just hope it doesn’t take me two years to drive to Santa Cruz again. He calls me mom and he’s my son.
WOW! I truly admire your work and love for these boys/men, Marian. I kept thinking that somewhere, somehow, someone will donate an ipad to you so that you can SKYPE and visit with your family more often than you are able to do right now!
Best wishes-
Louise Sattler
Hello Louise,
I’m glad you enjoyed visiting my website and learning a little about each son. Yes, it’s a challenge at times to be where I would like to be and technology allows us to do so much; but then again, some aren’t able to use such technology because of their limitations. However, I know a bunch who would love to have the best iPad out there to use to the best of their ability. Marian