Sunday, February 18, 2018

A Legguhlar Day with Rit Ronny

One was yelling at us for the 30-second drive up the street and the other one started rolling down his window as soon as we stopped.

Then he rolled it up again.

Then half-way down.

Then up again.

Then down again.

Then up half-way.

Then down again.

I giggled uncomfortably at first at these antics as we had just approached an entourage of people, a few of them quite well-known... OK, famous, really.

But, let me give you a little background as to why I was uncomfortable for a moment.

If you are a regular reader you have well learned that Sister is the biggest culprit in our family for saying words incorrectly. It's one of her endearing traits that we have all grown to love, yet, at the same time, hope she learns the right pronunciation eventually, but in the mean time, we'll just get a good laugh.

Some of her words I am so used to that I forget to correct her anymore and then I am reminded when one of her cousins comes to me in a giggle-fit telling me that she said "legguhlar" instead of "regular."

That was a week ago last Sunday that I was reminded of her funny way of saying "regular."

The next day on Monday night we were having our weekly Family Home Evening and we were going over a document called "The Living Christ." It had taken a LOT of manual and emotional effort to get Baby in to the front room with the family for our FHE and I was beginning to think that maybe it just wasn't worth the effort that night and was about to give up. But the opening song, "I Am a Child of God" got her to sit on my lap and after it was over she demanded I say the opening prayer.

After the prayer she was still content in my lap, Sister and Brother were "paying attention" by at least being in the room and I proceeded to review the first paragraph we were working on last week and started to read the next paragraph.

To my surprise, our rarely verbal, hardly reading until 6 months ago, little 8-year-old girl got after me because she wanted to read!

I was a little taken back by this as it had been such an effort to get her there and then to have her want to read in front of all of us seemed so out of character, but she started as I pointed at each word and helped her sound it out.

Marc and I exchanged shocked/proud/astounded/pleased looks from across the room a few times as she read--tears welling up for both of us as we witnessed what felt like a miracle.

Hearing Baby's little voice working so hard to read it without my help as much as possible...

"He was the Great Jehovah of the Old Testament, the Messiah of the New. Under the direction of His Father, He was the creator of the earth. “All things were made by him; and without him was not any thing made that was made” (John 1:3). Though sinless, He was baptized to fulfill all righteousness. He “went about doing good” (Acts 10:38)

That's where she ended in the second paragraph, "went about doing good." Then she turned it over to me. You can understand now after seeing the words she read to us that night why we were so amazed at the whole experience.

I remember thinking to myself while she read, "She's acting like a "legguhlar" kid, does anyone driving by our front window even have a clue at how legguhlar of a family we are right now?"

After a moment miracle like that, as a parent, you think it's going to be the best Family Home Evening ever so you keep going with the flow and then you are quickly slapped back into reality... remember we have kids with Fragile X Syndrome... I was literally slapped! Ha! Ha! Baby was not cool with me trying to add more on to our Evening and was ready for the closing song and prayer.

At that moment I realized, "oh ya, we're not legguhlar."

Tee hee!

The next night Marc and I took turns going to see Brother cheer at both the Orem High Girls' and Boys' basketball games. Watching Brother cheer with enthusiasm and Fragile-X-like precision I again had that moment of thinking, "He's just a legguhlar teenager." Then 15 minutes later I'm having to wipe his snack off his face because he is unaware it is making him look a bit unsightly.

At that moment I realized, "oh ya, we're not legguhlar."

Ha ha!

On Wednesday my heart leapt with excitement when Baby's friends came to the door to get her for Activity Days and she was so excited to walk over with them to the leader's home down the street. She carried her umbrella out into the rain and talked to her friends as the walked away from the front step and I thought to myself, "she's just a legguhlar 8-year-old girl!"

An hour later when she came home full of excitement for what she had done with her group of friends, smiling from ear to ear and babbling on about the fun she had, I thought again, "legguhlar!" Then as she bounced up the stairs I noticed her diaper sagging as she bounced...

At that moment I realized, "oh ya, we're not legguhlar."

Oh boy!

On Thursday I had both Brother and Sister's IEP's and 3-year evaluations. One right after the other. Brother's was first and I couldn't stop laughing at his humor as he sat around the table with me, his teacher, and the other administrators and teachers there to meet for him. He was cracking everyone up and really coming up with some good ones. I was so amazed at his quick-witted humor and his hilarious candor. I started thinking, "He's totally a legguhlar teenager!"

Then we started talking about what was coming up for him and all the things we needed to prepare for...

At that moment I realized, "oh ya, we're not legguhlar."


Right after his IEP came Sister's IEP. We talked and laughed about her adorable personality and all the things that she has improved on and her anxiety levels starting to calm down.

I have to admit during her IEP I didn't ever think, "She's just a legguhlar 12-year-old." I think I was still on guard after Brother's IEP and my reality check there, but I did remember to bring up to the Speech Pathologist her tendency to pronounce words incorrectly, so we set a goal for that.

That afternoon when the kids got home the entire basement was empty without carpet or furniture because the insurance workers had come to get our basement ready for new carpet (remember we had a slow leak in the basement back in November and insurance covered the clean up... anyway). Brother, more so than the girls, completely melted and was screaming and crying because it was all changed. Change and transition are rough on all our kids, but when your 18-year-old reacts like a 2-year-old you are reminded, again, "oh ya, we're not legguhlar."

Friday afternoon our carpet was done and our kids were back into their groove having their house back.

Saturday morning Sister was looking out our window and yelling, "Look, there's cameras!"

I rushed over to see what local movie stars were on our street since we had recently had a movie filmed in our neighborhood I was looking to see who or what was being filmed.

This, however, didn't look like a film crew for a movie, it looked like a news crew or some kind of reality show thing... I even thought for a moment that we were going to witness our neighbor receive some kind of cash prize or something and they were filming the reaction for a reality TV show.

Then I saw the guy in the front that the cameras seemed to be pointing to.

"That's Mitt Romney!" I exclaimed pointing across our street in excitement and astonishment.

We were getting ready to go to the temple in Manti and I was planning on doing my make-up on the 2 hour drive in the car so I told Marc he should go out and meet him because I couldn't be seen by Mitt Romney with my make-up not applied! I was so disappointed that I didn't have my make-up on the day that Mitt Romney was walking door-to-door in my neighborhood, but knew that Marc would represent.

it was windy on temple hill!

Marc sure did represent us! While we were gathering our kids and things into the car for the trip Marc had mentioned to me that he had talked to one of the Romney entourage and told her about our kids and Fragile X Syndrome! I was so proud of him! To top that off he had mentioned to her that we were leaving to get somewhere so we wouldn't have a chance to meet him and she responded that "Mitt won't care! Just drive down and he'll talk to you!"

Sister is very nervous meeting new people and it often brings out her worst anxieties. She assumed since I knew his name and what he looked like from across the street that we "knew" him and were friends with him. When she learned this factoid as we backed out of the driveway she began to yell at Marc and me, calling us liars and saying that this guy was scary and mean. She was in panic mode.

Now we are where I started... remember, the being yelled at and the window up and down scenario.

Ya, I was just waiting for Sister to tell Mitt Romney he was mean, for Baby to throw something at him and Brother to roll up Mitt's fingers in the window...

I giggled uncomfortably at first at these antics as we had just approached the famous, Mitt Romney. I could feel the sense of confusion as to why a grown man would be rolling his window up and down like this and a teenage girl would be yelling that he's a stranger.

Then I noticed the girl that Marc had talked to in front of our house. I could tell that she was explaining that our kids had Fragile X or special needs or something because they nodded in response and their worried faces turned to laughter and enjoyment at Brother's antics.

Brother saw that this was making them smile so he continued to entertain them.

When Mitt Romney finished talking to our neighbor he approached us in our van and leaned in to shake my hand and then Marc's! Our kids were making all sorts of excited noises and Mitt leaned in at Brother's window to say hello to the three of them. Baby, with a happy/joking smile on her face kept saying "You're fired! Yuh-yuh-yuh-you're fired!" I think Mitt was a tad worried at that point and wasn't exactly sure what to say, but I assured him she was just trying to be funny.

Mitt was out getting signatures for his US Senate run and happened to come to our neighborhood on one of his many stops that day. We signed a petition for him to be able to run and while we did so I started to tell him about Fragile X. He seemed so interested and wanted to know more and then Brother piped up, "Yep, and I'm on the cheer team!" Mitt and Brother had and exchange of words and Brother also told him that they were going to Disneyland for cheer competition next week.

Brother was so proud to tell him about what he has been doing. He even shook Mitt's hand after their short conversation and we laughed and I told him that he had just made my birthday very memorable. Then I remembered how thankful I was for my dark sunglasses as I still had no make-up on and was having a conversation and joking with Mitt Romney all while being filmed and photographed (crossing my fingers that I was sucking in and that you can't see through the sunglasses that I have no eyelashes).

Sister kept shyly smiling and looking up at him every so often.

We drove away star-struck and excited to have met such a genuine man as Mitt Romney. Brother kept saying, "He is a good man. He's a really good person. What a great guy. I really like him. He's a good man. What a good person he is." He was so impressed by Mitt and wants to have him over to our house to have dinner. Frankly, we do too, he was just that kind of a guy.

I turned to Sister and reaffirmed that even though Mitt Romney was a stranger to us that we now knew him and everything went OK and it was all fine.

Marc and I praised Brother for talking to Mitt and not being shy, and being excited to tell him about himself.

And for that moment I felt like we were just a legguhlar family, just like any of the other families in the neighborhood that day who would be excited to meet Mitt Romney and want to get pictures with him and have conversations.

As I'm having these thoughts and the kids are chit-chatting about the experience in the car just minutes prior I catch Sister saying, "I really like Rit Ronny!"

Ha ha ha ha!!!

"Hey Raggy! I just met Rit Ronny!" was what came out of my mouth in a Scooby Doo kind of demeanor.

We all laughed.

Sister even laughed, even though she wasn't quite so sure what was so funny about Rit Ronny.

After all, she had decided he was a nice guy!

Ya. It was just a "legguhlar" day with "Rit Ronny!"

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