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!"

Saturday, January 27, 2018

The Greatest Snowman

She was overstimulated and was switching between being angry and being overbearing so I grabbed her tight in my arms and carried her to her room and we laid down on the her bed where Ranger quickly joined us.

Baby grabbed my face and looked at me with a smile as her eyes twinkled from the light shining from the hall.

Rewind a few minutes earlier and she was smacking her siblings in the face, teasing Sister by taking things from her and threatening Brother with her lunges toward him.

Both Sister and Brother were crying.

Baby got in trouble for causing the crying so she joined in the chorus.

That's when I scooped her into my arms to help her escape her stimulation overload.

As I laid there with Baby in my arms listening to her breathe and watching her tickle Ranger's ears, I started thinking about earlier this morning when she began dancing to some of my favorite music I had playing on my phone before school.

My kids can make or break me all within moments of each other. I really never know what to expect, but I have learned to savor, remember and engrave the good things to my memory and my heart.

With these happy thoughts in my head and Baby in my arms I decided to take a big risk and sing to her.

Singing to Baby is always a risk, because she usually hits me in the face, covers my mouth with her hand or screams at me to stop.

I thought I'd start quietly with a simple Primary song and to my surprise I actually got through one sentence without her smacking me so I was ready to happily continue singing.

Then she routinely placed her hand over my mouth and firmly said, "No. ... Snow man." She said while still squeezing my face with her little hands. She loves Frosty the Snowman, I mean LOVES him. She sings the song and watches the movie on YouTube quite often. I was happy to oblige her, but couldn't think of the Frosty song at that moment.

So I started to sing, "Once there was a snowman, snowman, snowman..."

Hand over my mouth again.

"No. Great Snowman,"

So I thought I'd add actions to my "snowman" song.

"No. Dancing... Greatest... Snowman."

Clearly she was trying to tell me to do Frosty, but it still wasn't coming to me. She doesn't do well with the "waiting" process so I knew I didn't have time to think and only to react, I mean, we were having a "moment" here, I couldn't ruin it by upsetting her with waiting while I tried t remember the magical, dancing 'Frosty the Snowman' song. So I sang the Snowman song with more vibrance and added in some hand dancing.

"No. Mom. Say Great."

I stopped my hand dancing and complied "Great." I repeated.

"No. Mom. Gray..."

"Gray, " I repeated.


"Greatest," I said with some hesitance.


This time I paused... "Oh, Greatest SHOWman?"

She was proud of me for figuring it out.

She had had such a great time dancing to my music this morning and that is the soundtrack I was listening to.

I brought up my phone and we played music from The Greatest Showman soundtrack.

It brought new meaning to sing these songs to her while she listened intently and then would pick another song.

Singing "Never Enough" made me think of all the barriers that will want to hold her back and the strength she'll have to not let them keep her down.

We listened to "This is Me" and she jumped from the bed to do her interpretive dance.

Then she laid back down and picked more songs.

One by one, each song played, some for a few seconds, some for a few sentences and some for most of the song.

"A Million Dreams" rang out and I marveled at all the dreams she has for herself and others and that wonderful day when she'll be able to express all of that to me.

This is why I love the movie "The Greatest Showman." It is set on encouraging people who are different to be their best selves and to show the talents that they have and to stay true to yourself and others.

If you listen to the words of "This is Me" you will know why it tears at my heart strings. "Hide away, they say... we don't want your broken parts." I'm not scared to be seen... This is Me!" "I won't let them break me down to dust... We are glorious!"

I know, I know, "The Greatest Showman" is, by no means, a documentary. PT Barnum was not perfect and by no means do I condone everything he did, but I think this movie was not meant to be about mistakes or bad decisions he made. Instead I think this movie, and Hugh Jackman's motivation for it, was to be about the lives he changed, the opinions he tweaked and the talents he helped shine all while being brave enough to be different. There are only some truths mixed in with PT Barnum's most inspirational quotes and the fantastic story line of the movie.

Guess, what!

I don't care!

The entire time I watched this movie I thought of Brother and the opportunity he has to be a "performer" on his cheer team. I am so thankful for people who are willing to embrace my children and let them shine regardless of it being an unconventional way to go about it.

My life truly is a three-ring circus.

I can't lie.

We often have elephants in the room no one wants to address, trapeze artists seeking higher risks to take, a lot of clowning around, critics on the outside, a peanut gallery, and two ringmasters who try to keep it all under the big top.

I was in heaven singing to Baby while she smiled at me and put her hand on my face. Trust me, this is a first with her. I will treasure this memory for life.

"The noblest art is that of making others happy." --P.T. Barnum

May we all aspire to be and do that of the noblest art.

Our three kids are noble so often and I am so proud of them.

Brother for your love of cheering people up and cheering them on.

Sister for making every single person feel like their story is important.

Baby for sharing your art with those around you everyday.

I am grateful.

I am not without trial, despair, heartache or pain.

But, I am blessed.

Circus and all.

I am so glad to be part of the greatest "show" on earth, known as Our Life!

How Brother greeted me in the morning

A picture my friend sent me of Brother waving to her in the crowd

an exciting moment of my two girls wearing shirts I drew for them by request

I knew Baby was an artist but finding this little gem in her coloring book got me excited that she really wants to learn it!

Just two clips from Sister's day out with a friend of her dancing and singing in the aisles while the toys played music 

Want to learn more about Fragile X Syndrome? Click HERE

Want to learn more about Mormons? Click HERE

Tuesday, January 23, 2018

Handicapped Parking

I used to do it.

I'm completely guilty.

I had no idea how incredibly inconsiderate and rude I was being with such a simple and lazy action.

I mean, it was just too much work to take my empty grocery cart to the cart stall or back into the store after I had already shopped for 2 hours with a crying, tantrumming, agressively overstimulated child just to buy stuff that would be consumed within the week and then I'd be back again.

I mean, come on. Give me a break!

I did not have time to put away my cart.

I read a post several years back about how rude and thoughtless people were who did not return their cart and it really hit me! (Gasp!) I'm that rude and thoughtless person!!

OK. Granted when I read this post I was not taking young children with special needs into an overstimulating super store and therefore was not as taxed and worn out like I used to be, but I was perfectly capable of putting the cart away.

So, I have made it a goal to park close to a cart stall so I can return it easily or close by the front of the store to return it through the front door, all because of someone's ranting post about returning grocery carts.

I TOTALLY get the whole, I can barely get my kids into the carseat and still keep my head on straight let alone even think about returning a stupid cart to the store. Heck, I was lucky sometimes to even remember to get all my groceries, purse or phone out of my cart! I can't tell you how many times I thanked the Lord for honest people when I would leave my purse or food in the cart that I had left by my driver's side door in my desperate escape from mayhem.

One of my happiest moments of service are the times when I get to return a cart for an over-tired, over-worked mom or an older person that seemed to just need help lifting the heavy stuff into their car.

So I try not to judge or be mad, because I've been there.

I've unknowingly been that "thoughtless" or in my words "desperate and forgetful" person that leaves my cart by my car or in the empty parking stall next to me. Heck, I've even gone to the work of lifting a cart up over the curb so it wouldn't roll away, but would also save me the time of walking 8 stalls over to put the cart away.

So, here's my gripe:

Why is it, that lately, I have been noticing the disabled or handicapped parking spots are plum full of grocery carts?!!

Are people really in that big of a fog that they think that there would never be a disabled person who would go shopping.

I can just picture the thought process now, "Oh, it's not like this spot gets used that often, I'll just put it here..." 


I was at a store today and there were 6 carts in one handicapped parking stall!


I cannot tell you how many times while our kids were growing up that we have wrestled, ran, ducked and covered or literally flown across a parking lot to save our children, who are completely unaware of the danger of the cars in the parking lot, from being hit, smooshed or flattened by one. I have wished many, many times, that we had a handicapped parking pass so that we could have the blessing of being closer to the entry of wherever it is we are going. It would have been such a blessing! I can't imagine what it would be like if our three kids were in wheel chairs and we can't find a place to park because all of the places for us to access easily are crowded by grocery carts!

If you don't have the time, patience or sanity to put your cart away after a long, drawn-out, taxing in more ways than one shopping trip, please, at least put it in a spot that doesn't have a wheel chair painted on it in blue and white.

OK, that's it.

Rant over.

On the bright side, Brother was a lot of fun tonight when we tucked him into bed. He was joking with us and really laughing happily. I love seeing his personality shine! He's a credit to his name and truly brighten's up the world around him.

I think his really good mood was credited to him having the opportunity to see a dear friend and get a picture with her! I don't think he stopped smiling since this picture was taken at the game he was cheering at tonight!

Sunday, January 21, 2018

Pulling Her Leg

I pulled her first by her feet and then she grabbed the handle above the van door and it caught my body off guard and I jerked forward and launched my stomach into her feet, but I wasn't going to give up.

Sounds like I'm trying to escape something horrible doesn't it?

Well, it was actually just me attempting to get Sister to go to a youth activity at the Bishop's house tonight.

Brighton ran right in and even waltzed on in without knocking knowing the routine of it all and showing off that this was all "old hat" to him. His 8-year-old sister was galloping behind him in excitement.

The activity was meant for kids ages 12-18, so Baby has about 4 years before this will be her activity, but she sees her brother and sister going often for youth activities so she just assumes it is for her too.

I tried to get Baby to stay back in the car with dad while I got the older two to the activity, but it was slightly humorous that our youngest was waltzing in like she owned the place and I was physically having to drag/carry/lunge Sister to the house.

It was quite a bit of effort just to get her in the door and then I didn't have much fight left in me so I plopped on the floor next to the entry way and held Sister in my arms tightly so she couldn't run away.

I'm sure it was quite a sight, yet another slightly humorous thing was to watch most of the kids come in, see me wrestling Sister and they would just nonchalantly say "hi" and ask if she was going downstairs for the program and didn't even bat an eye at the fact that her mother was restraining her on the floor of their Bishop's house while screaming "No!" at them when they asked.

I guess after a few sincere greetings I guess Sister decided it would be OK to go down when our neighbor girls (dear friends) greeted her and reach out their hands to pull her up from the floor and she was good to go.

Baby was all settled in and did not want to leave the youth so the Bishop suggested she could just stay. Marc and I sat and talked to his wife and daughter upstairs while all the kids were downstairs talking with the Bishop on spiritual matters.

It turned out to be a great outing. The kids were happy to be with friends and Baby was ecstatic to be with the big kids and Marc and I enjoyed our conversation with friends. Sister acted as if there was never a struggle or aversion to going to the activity, especially when she realized some deliciously gooey brownies were involved.

Earlier today while visiting Marc's parents we played 4 rounds of dominoes and Marc even played with us. Marc is not a HUGE game fan so it's always fun to get him involved.

It was a good day overall.

I just have to not think about driving this morning to meet my mom for a performance at a missionary farewell only to find out that we were told the wrong time so all the stuff I went through to get myself and the family ready this morning in order to get to the performance on time and had caused high stress on my part and not exactly a lot of quiet patience was now all in vain. And I'm going to ignore that my ankle hurts a bit after contorting at the right angles to get Sister from the van tonight.

Well... OK, I'm not going to ignore it, I'm just going to laugh about it.

I'm guess I'm just accepting the fact that Heavenly Father knows how much I enjoy a great adventure!

A happy girl showing off her double stroller that Grandma Judy found.

Saturday, January 6, 2018

Completely Surrounded

Have you ever heard the saying, "When it rains, it pours"?

If you haven't, well, it's not exactly referring to actual weather, but to trials, tribulations or hardships... you know, saying that it can't just be one, but many that seem to come all at once or in immediate succession.

I've heard this reference my whole life for one reason or other.

I use it myself a lot.

Well, for the last while I felt completely surrounded by rain. I used to be able to honestly laugh about the ridiculousness of the piling on of trials, but somewhere around July of 2017, I lost it.

I was good at faking the laugh, the humor, the ironic insinuations, but I was truly letting it, deep down, take its toll.

Completely surrounded.

Behavior issues rising for one kid, new obsessions for the other while aggressiveness and oppositional, defiant attitudes are in another.

Stress over Brother's guardianship--the cost and the endeavor.

How to get Brother and whether to get Brother on his Cheer Competition trip AND his choir tour with the heavy-laden-guilt pushing on our shoulders that this may be his only opportunity for this type of peer interaction and activity for the rest of his entire life!

Surgery on my ankle that I had been trying to avoid for almost 9 months was impending and the preparations to be made beforehand were daunting and overwhelming.

Two weeks or so before my surgery our dishwasher broke. Because of our financial situation we decided we could just do dishes by hand and that we would just use paper plates and cups after my surgery to cut down on Marc's responsibilities.

Two days before my surgery we discovered that our basement had had a slow leak from our water softener that had caused mold problems and required repair and clean-up. This was a cost that was just adding to our legal costs for guardianship and the costs for my surgery on top of the costs for Brother's upcoming high school excursions.

One week post surgery the company coming to clean up our mold problem found that it was more extensive than originally perceived and was going to take more time and more space and was going to encroach on our children's routine and comfort level.

Two weeks post surgery and I ended up in the Emergency Room for unexplained severe pain that no one could help me with so the following morning my mom rushed me to the doctor and we forced our way into the office to be seen only to find out that the doctor hadn't given me the necessary things needed for proper healing at my recent 2-week follow-up appointment. Upon hearing of my situation my sister-in-law, Chelsea, came to the rescue with food and cleaning and keeping kids happy when we realized (after Chelsea was trying to cook bread sticks to go with her home-made chili) that our oven was broken. So now half my kitchen was caput.

Because of the meds I was using for post surgery I wasn't able to rely on my fake sense of humor and I was going down quickly.

Having to talk to the lawyer during this time about all the reasons that Brother could not take care of himself after age 18 didn't help out my depressive situation either.

Sounds like such a drag, huh.

I mean, I can barely read through it.

I hate hearing about all the trials people go through.

It wears me out.

But, that's the thing, I've only been telling you about being surrounded by the rain, the trials, the tribulations, the broken appliances and mold.

But now I want you to see the other side of this long drawn-out few months of never-ending struggle.

You see, really, we were completely surrounded by ...




By Angels.

Angels everywhere.

Friends set-up a fundraiser to help raise funds for Brother's high school activities and money was raised by other friends and family so fast that we were able to pay all of his way for both trips!

Visits with our wonderful pediatrician shone hope for our kids with different ideas for meds and behavior ideas.

Miraculously we have one of the few home insurances that covered mold caused by an inside leak and all we had to pay was our deductible. To top of that blessing of good insurance, our deductible for the mold removal and restoration was paid for by an angel that I hope will be continually blessed for their generosity.

We had an angel buy a used, but awesome, dishwasher for us to replace our broken one after 2 months of doing dishes by hand.

Because of all the angelic caregivers we have who love our children I was able to arrange for plenty of help for the kids so that I could heal from the surgery.

The night I was in so much pain post surgery our dear friend ran over to help Marc give me a Priesthood blessing of healing. I was shortly after relieved enough of pain that we were able to get to the ER without too much of a scene.

My Sister, Kirsten came and painted my toes all fancy

Documenting progress

I was able to find lawyers for our guardianship case that were lower-cost than most and I also found out that Brother's lawyer has ties to people here in our neighborhood and helped me feel more comfortable about the whole situation.

Sadly, my depression was still in full swing and I was starting to lose hope as this seemed to be the longest period of depression I had gone through with no sign of the end insight, and as silly as it sounds, my depression deepened because I couldn't pull myself out of the darkness I was in even while so many people were doing everything they could to lighted our burdens and take upon themselves our heavy load.

Then there was the day of the wheel chair...

My mom turned my whole life around by a simple wheel-chair escapade to the mall.

That day is where my whole world flipped and I was able to finally, truly smile again, with all the honesty I had, and laugh from the heart and feel love for myself again and exploding love for my mom and all my family.

I never pictured myself laughing with my heart full of love while I was pushed around the mall in a wheel chair, but here I was, down in a chair  while feeling on top of the world!

I wish I could explain how or truly why my whole depression was lifted so immediately and dramatically, but the only answer I can give is that we were completely surrounded...

by angels...

I know that my mom was guided in every step she took to cheer me up that day, and not just to lift my burden to but to lighten my mind and heart. I had so many reasons to be happy, I mean, if you've followed me on instagram or facebook you darn well all the things I have to be happy about.

I hadn't told my mom about the heaviness I felt in my heart because of the memory loss I have been facing the last while, yet she was inspired to bring her guitar and we sang songs that triggered memories I thought were lost.

I didn't tell my mom that I just needed me time because I didn't realize I did and she completely focused on me all of her attention and energy.

I didn't know that jokingly sitting on Santa's lap at the mall with my mom and telling him what I wanted for Christmas would be so therapeutic, but it brought back that child-like trust and innocently honest joy I hadn't felt in so long.

I would never have admitted that I secretly hold a little hope in every fortune cookie I open, but to read the particular one that we opened at our little lunch we shared together at the mall's food court would be so revealing and heart-warming as it was. I took a picture of it to remember it and I have noticed since then that I have taken photos of the fortune cookies I open and and inspired by.

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I wish I would have written every tiny detail down that day so that I would remember every moment of what made that day so special, but I am happy that I took a few videos that I excitedly shared with the facebook world. I'm positive that those who watched my facebook live post of my mom and I singing our hearts out, laughing and joking together that they were witnessing the healing of someone before their very eyes.

Everything after this point was seen through different eyes, felt by a renewed heart and heard by blessed ears.

Yes, our basement is still in total disarray as we wait way too long for the company to come and finish the job.

I'm learning to cook on "BROIL" in our broken oven and realizing all the fancy settings our microwave has.

I was out of my boot sooner after surgery than I thought I would be and was able to volunteer in the kids' classes before Christmas and that was such a joy!

The humility of accepting financial help was softened as I realized the blessings people were receiving for helping us in our time of need.

"When it rains, it pours."

That's what they say.

I always try to say, "Then sink or swim."

Now I know that I have to just accept that sometimes I am completely surrounded by the storms of life, but at that same time I am completely surrounded by angels, heavenly and earthly, who are ready to help me swim, or even float to until the storms die down, or sometimes, in my case, keep my head above the water long enough to see the light through the darkness of depression.

by Jessie (my sister)

A wise man, whom I love, admire and respect, passed away this week. In an article I read about him was this quote and it seemed to fit my blog entry today:

"My counsel for all of us is to look to the lighthouse of the Lord," he once said. "There is no fog so dense, no night so dark, no gale so strong, no mariner so lost but what its beacon light can rescue. It beckons through the storms of life. The lighthouse of the Lord sends forth signals readily recognized and never failing."

Thomas S. Monson (LDS prophet Feb. 2008 - Jan. 2018)

Thursday, November 16, 2017

The Ruby "Woo!"

Life grabbed me by the feet and flipped me upside down and threw me into a tail spin.

I thought I had life planned out when I was 18.

Such a funny thought.

How would I even know what to plan for life at 18?

Now 23? Ya, 23 is when you can plan your life. You know then. I mean, you've now experienced real life for 5 years, and besides, I just had my first baby. I now had his life planned out too.

Marc and I would dream together about all it meant to have a son. You know how it is, and if you don't know, you dream of how it is, either way, you have "plans" of what you will do with your kids, what you hope they'll do, what you hope they will become.

Such a strange thought.

How would we ever know what to plan for our children's lives?

But at 40, I mean, really, you definitely know what you're doing. You're a veteran. A pro. An experienced liaison in this business of life. I mean, we have 3 children with special needs, Fragile X Syndrome. We know the ways to push and inspire and even sneakily trick our offspring into doing hard things, great things, new things.

Funny that we thought we knew what we were doing.

Why did I assume that just because our son has Fragile X Syndrome that our life would never be full of "typical" parental experiences like watching your son cheer at a Football game for his high school or take girls out on dates to the school dances?

But, we're handling it OK. It's overwhelming to go from one extreme to the other, but we are surviving so I guess it will be OK to move on with our lives and get done what we need to...

So... after 9 months of dealing with the aftermath of a sprained ankle I decided I would give in to the doctors recommendations and the advice of an MRI to have surgery done. I mean, this would be my 8th surgery in my life, I got this. I know what it takes to heal from a surgery. I know how my body responds. I prepared meals ahead of time for the kids. I arranged respite care to help me before and after school for 2 weeks until my follow-up appointment where I knew I would be told that I had done so well that I can just start walking without crutches in the boot...

When will I learn that I can't plan on anything?

When will I realize that life has it's own plan-maker?

I'm sitting in the ER right now waiting to hear why, after getting my splint/cast off yesterday, did I experience the most excruciating pain I've ever felt in my life 2 weeks AFTER my surgery was done?

---pause for x-rays and doctor's report---

I'm fine. Just a big baby. More pain meds and a doctor visit to the surgeon tomorrow to find out what my problem is.

Anyway, the reason I am telling you all this is because before the extreme pain and the freaky circus my day became today (I'll save you the details and long sordid story.) I was inspired.

Really inspired.

Not like spiritually or an "aha" moment... I was inspired to write.

I haven't felt that for a long time. I've let my urges to write fall by the wayside so that I could be there for Brother and all that he is doing in his amazing Senior year! And to hold Sister's hand through the whirlwind we call Junior High and try to understand the world that Baby lives in.

But today my mom shared a really great song with me and I was so proud of it that I gave her the, what I am calling, "The Ruby 'Woo.'"

My maternal grandmother's name is Ruby. She was such an optimistic woman. I mean, she found a reason to be happy in any and all circumstances. We all loved to do things for her to make her smile. You always knew it was really good when she'd clap joyfully while smiling her beautiful smile and and then give a warm and jovial "Woo!" or "Woo hoo hoo!"

It was her signature.


It was as if after each performance we did for her whether it was a somersault on her front lawn or singing on stage she was signing off on our good deed with her Ruby "Woo!"

Amidst the pain and frustration I was feeling today I was sent an inspired post that someone had written about our son, his teacher, and his cheer leading team, but especially him.

I've shared many videos recently on social media about his accomplishments and various things that have happened that make me smile and sigh in awe thinking of the plans I thought we had for him and then didn't have for him and then ... oh my...

But you guys, this person touched my heart on a day that I don't think could have been worse, but it made me cry grateful, happy tears. These words are the only thing that kept me on the positive side, the optimistic side of life today.

You just can't plan your life.

Yes, you can prepare for your future, you can set yourself up for hopeful outcomes, but don't plan your life.

If my life had gone as I had planned I would never have read the words in the image above and known that it was our son that had touched those people's hearts.

And to that I give a Ruby "Woo!"

That's the highest form of appreciation, adoration, and admiration that I can think of.

"Woo! You did it son! Woo hoo hoo!"

If you are interested in any of the posts that I mentioned here are the links:

Brother dancing at the half time for the High School 4a football game - Orem vs. Sky View
(go to the 1:09:28 time mark to see the beginning of Orem's half time routine)

Brother, his teacher, his classmates and me on a little local news thing to honor Mrs. Glahn

My mom's Christmas song

Tuesday, September 19, 2017

Yelling at Angels

My mom and I have decided that it's in the genes.

The weirdest, most random and bazaar things happen to us at the most inopportune moments.

I don't quite know how to explain it, but if something is going to go wrong, it will probably be me or my mom who cause it... not on purpose... oh no... certainly not.

That's what makes it all so amazing is that it is completely coincidental.

I would say that my mom has the gene stronger than I do, but I have it bad enough that I can make her laugh at my mishaps.

It's always when I'm in a hurry... always.

Yesterday getting the kids and myself ready for church proved to be a feat that was beginning to look near impossible.

I had gotten all the kids ready to go so now it was my turn to hurry up and get ready in the 30 minutes I had before church started and we try hard to get there at least 15 minutes early, so really I had 15 minutes to get ready. Ya, ya, save your thoughts of, "It doesn't even take me 15 minutes to get ready" you can keep those comments to yourselves because that is something else my mom and I share in our genes is that we can't exactly pull off the no make-up and a messy bun look... trust me... we know it... you shouldn't have to...

Anyway, back to my story: I now had 15 minutes to pick out a dress, get dressed into it, put on make-up and get my frizzed hair tamed enough not to look like I'd rubbed my head on the carpet.


There's always a "but."

Because my children were melting that the 100 pages I had printed off yesterday were now all colored, I just HAD to print off more coloring pages for them because, heaven forbid that life go on without coloring.

So at that point I was getting a little edgy because I was having to take time to find the coloring pages they wanted so that we wouldn't have a major melt-down at church caused by not having enough ninja turtles or my little ponies to decorate.

It took me at least 5 minutes to get some pages picked out. I started them all to print and told Brother to watch for the prints to come out and he was to give a fair share of coloring pages to his sisters.

I was now down to 3 minutes before 1:00. And it was going to take me at least one of those to get down the stairs and into the van of my waiting family members. Realizing I had no time to shower I had to forgo shaving my legs so I had no choice but to wear a really long dress or skirt. (Sorry to anyone who sat by me... I hope we are still friends.) After mulling for a few quick seconds over what I had in my closet I decided that I felt like wearing a really awesome flowy, colorful, fully twirl-able skirt - the epitome of the complete opposite of how I was feeling.

After I got dressed I realized I was going to need to get in the car and just do my make up in there.

I grab my make-up and church bag for the kids an start to rush out my door when suddenly I am yanked back full force at the height of my ankles and almost topple to the ground as I am off balance with my full church bag full of discarded coloring pages I forgot to empty last week and books to use as their desks as well as multiple sensory toys for moments of melting because the coloring pages ran out before the closing prayer in Sacrament meeting.

I look down and my really cool, really long, beautifully colored Hippie skirt has whipped its way just enough under the door to catch on the bottom corner and lodge me into space! Who in the heck manages to catch the bottom of their skirt at the bottom corner of a door? Me or my mom, that's who.

At that point my frustration levels are already high because nothing this morning has gone very right so far... so my patience is waning.

Oh but it gets better. As I leave my room I notice that none of the bedroom doors are closed and I know Marc is waiting in the van with the kids so I can't holler at anyone to shut them for me so that Ranger doesn't chew on anyone's toys. So I sashay down the hall after closing my bedroom door, then Baby's, then the bathroom's and my skirt is swishing and swaying with quite the sound effect as I rush to each door to close it.

Sister's was the last door to close and because I was beginning to get a little bit of joy from the sounds and feel of my happy skirt, I closed Sister's door with a little bit of style... like with a half turn, a flick and smile as if I were in a Disney musical.

The doors are all shut and I finish out my victory turn and... "zzzzzzzzzzzzzzzzppptt! Wham! Bang!"

I had shut my skirt in the door and I was a tad bit miffed that because the "every action has an opposite and equal reaction" scenario I was flung into the wall smacking my head on the corner of the doorway and tweaked my neck in the whole turning, fumbling, getting stuck experience.

And did I mention the skirt got thoroughly stuck in the hinge side of the door... not the typical shut your skirt in the door kind of experience... wait... is there a typical shut your skirt in the door kind of experience?



Keep all that in mind.

My mom and I also always joke that the angels watching us get a good laugh every so often when we do stupid things and tease that they help cause the mischief that gets us into these situations. I guess it's our way of being able to laugh at how unlucky we seem to be at times.

Now back to having my skirt stuck in the door...

I was so mad at this point that instead of just opening the door to release its grip on my skirt I puuuuuuuuuuuuuuuuuuull it out of the door.

So after dramatically... and I do mean dramatically... wrenching the skirt from the door I start to get really steamed.

So I yelled at the angels to "knock it off!" and "stop laughing!"

Yup, I had lost it. I was now yelling at angels.

After getting in the van, I am privy to understanding that there has been a melt-down in the car because Sister doesn't have the coloring page she wanted...

"What?!!" I just spent my time looking for coloring sheets to print for each child and Brother has the audacity to hog the entire pile of coloring pages so now my frustration level is high. I quickly grabbed his stack of coloring pages and flipped through to get Sister's pages to her and calm her down.

Wait... I thought I printed more than this... I turned to ask Brother if he had grabbed all the pages in the tray and then realized that the printer must have run out of paper.


Marc stops the van in front of the house (because we didn't get very far yet) and I stopped and mumbled under my breath wondering why nothing was going right this morning.

Low and behold, when I got in there, it was indeed out of paper.

I loaded the paper and waited while rolling my eyes and bouncing my knee with impatience.

Finally printed.

I run up the stairs...


I tried to run up the stairs.

Did I seriously forget what had happened 10 minutes previous because of my flowing skirt?

One big face plant away from a nose reconstruction I was able to catch myself.

Quietly, in my head, I thanked the angels for, at least, catching me before it got bad and then picked up my skirt like a proper lady and walked quickly back out to the van.

I wish I could give you a really inspirational happy ending like:

And when I got back into the van I looked around me to realize that I had angels all around me... our children...

but they were still falling apart and yelling at each other and grating on mine and Marc's nerves.

Nothing, was really going to change but my attitude.

So I write these things down so that people can laugh at how amazing I am at getting my dress caught on and in doors. In fact it reminds me of how talented I am at getting the front pockets of my jeans or even a belt loop stuck and the little thing-y that keeps a door closed. I'm amazing at that. Truly, I am.

I'll just try to keep the yelling at angels thing at a minimum...