Meet My Amazing Uncles. . .

Vince

Bill

Meet Bill & Vince, my mom's brothers.  They were born with Fragile X Syndrome, work at a local "business" that helps teach them life skills and gets them out in the community, and live with their mom.  Grandma is declining in health, though, so my mom basically lives there.  On the exterior it may seem like a breeze for mom.  Sure, mom doesn't go to work, she can watch TV, play computer games, or "whatever she wants."  If you dig deeper, though, and really know my family and their needs, you will see it's not such a good "gig."  She took it on, though, because she wants the boys to be able to stay with family and for Grandma to be able to stay out of a nursing home for as long as possible.  Before mom "moved in", my aunt Lori and her family were staying there.  (Lori will be an upcoming post dedication of her own.) 

Anyway, I think my mom is amazing for taking this on and I look up to her for it.  A lot of people find it a lot easier to let their parents go into nursing homes (or maybe that's the only choice for many, I understand), but my mom refuses.  She took over the roll of the backbone in the family from Lori and is making it work.  We're a quirky family and even though every single one of them can drive me nuts on any given day, I wouldn't trade any of them for the world.

When I was in college I started inquiring about Fragile X.  My family was looking into it as well.  It turns out that 50% of children from a person who carries the gene will also carry the gene, but not necessarily be "infected" by it.  My Grandma had 6 kids.  Bill & Vince have Fragile X, so one more child "has to" have the gene, though it's dormant.  Before we started looking into this I had always wondered..."in the future when it's time for me to have kids, what should I choose?  Do I go ahead and bring a child into this world knowing there is a possibility of (s)he having Fragile X...knowing what (s)he would have to go through...knowing how society sometimes doesn't accept people who are different...?  Or when that time comes should I just choose adoption...?"  Whenever I discussed these thoughts with friends I was very clear to point out that I wouldn't have any problems having a child with Fragile X, I just worried about the quality of life they would have and the guilt I would feel knowing that I knew the "condition" they would have.  I love Bill & Vince so much...just the way they are.  I would never change them for the world.  They are amazing men and anyone who doesn't know them is truly missing out.

I forgot to to mention, while I was in college I got the blood test done to see if I'm a carrier of Fragile X, and thankfully, I am not!

Enough of this serious deep stuff, though.  Let's move on to some light-hearted stories about these "gooks"!!  (Let me just say...yes, I know what "gook" is slang for and we, as a family, mean no disrespect.  I honestly have no idea how or why my family started calling each other gooks, but it's not a derogatory name or statement by any means.)

What amazes me about them is that even though they cannot tell time whatsoever, they always know when it's 6:30pm and 8pm.  As you probably know, routine is key for people with "disabilities" (I hate that term and all other terms like it - but I don't know what else to use...I really do hate those words!) as well as the elderly.  So, Monday through Saturday, 6:30pm means Wheel of Fortune.  Every day of the week, 8pm means pills (for the boys) and drops (for Grandma).  I don't know how they do it, but they know.  If the TV is on something else at 6:25pm, both boys will start pestering us to put Wheel on.  It's ridiculous, really...and amazing.

Vince loves talking on the phone.  He thinks he's a hot shot (all of the time, but especially when he's on the phone).  If he uses mom's cell phone to talk to someone he automatically goes into another room with the door shut for privacy while he talks to the caller.  The conversation never contains more than the normal - hi, how are you?, sleep well?, busy day?, work today?, etc. - but it's all top secret stuff!!  Within the last year or so, though, they found this phone that you can replace the (big) numbers with pictures of people and then program the number/face to call that person.  It's pretty awesome.  Initially, the use was for emergencies so that Grandma and the boys could call if they needed help.  Now, though, it's more for Vince to call Wes & I.  He feels so special that he can do it all on his own.  If we don't answer, though, he gets pretty offended.  haha!

Speaking of Vince being proud of himself:
I went over there last night for supper.  Mom had made ham & bean soup the day before and had bowls made for Bill & Vince in the fridge.  As I was eating my soup mom asked Vince if he was ready for his.  He said yes and got up.  Mom, out of habit, said "No, I'll get it - sit down."  Vince said "No, I'm a big boy.  I can do it."  Boy did he show her...he got his bowl tupperware dish out of the fridge, poured it into a soup bowl, put it in the microwave, and pressed the number 1 (which puts one minute on the microwave and starts it).  He proceeded to look at mom in that cocky way of saying "See?"

Months and months ago (honestly, maybe a year ago), I was over there and mentioned that I needed to clean the bath tub/shower.  Vince, ever the gracious one (and always trying to find a way to go anywhere) said that he'd do it for me....wash the tub!!  I told him I'd take him up on it.  Something was going on at the time where I couldn't take him home to actually do it, but it sort of became a running joke.  He'll still randomly ask me if my tub is dirty.  So the other night I'm over there and he asks me if my tub is dirty.  I respond with "Yes! You're supposed to come clean it!"  What is his response, you ask?  "I will.  Just let me know, text me." 

"Text me."

I almost cried I laughed so hard.  It's crazy to me how much he evolves with the times.  Obviously he can't use a cell phone, but he knows what they do and what sounds they make when they're doing certain things.  For example, when my dad calls my mom, the ringtone sings "He takes the tractor another round, another round, another round" and Vince knows...  It cracks me up!

I took Vince with me to the hospital Thursday to visit Grandma.  She has a little dementia, so when she's in the hospital her memory and goofiness get quite a bit worse.  While sitting there I started quizing her.  I pointed at Vince and said "What's his name?"  Vince chimes in with his full name.  I inform him that I'm not speaking to him.  Then I ask Grandma who he is to her and he said "Your son!" before she can even blink.  Such a turd.
Then a nurse walks by down the hallway, goes by Grandma's door, stops, backtracks (literally walks backwards), and says "Hi Vince!!!!"  I'm stunned.  He hadn't been there yet that week during Grandma's visit, which means this nurse (whom I don't know) remembered him from whenever Grandma had been in there last.  As my cousin Waylon said, he does make a lasting impression!

I'm sure I'll be sharing endless stories about these guys (more so Vince just because he's such a ham), so now you all know more about them and can better relate when I share their stories in the future.



Day 3: Neighborhood
This is the street I drive down several times a day - it's so pretty in the fall and winter with leaves or snow.