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.

Literally.

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.

BUT!!

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?

...

Anyway.

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...

Yep.

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...

Thursday, August 31, 2017

Moments of Winning

Well, Brighton made it through the dental experience on Monday.

Not exactly with flying colors mind you, unless you count the vomit that kept coming for an hour after he awoke...

But one thing that was very endearing to me was that he was wanting me to hold him and hug him to help him feel better. I'm sure a little bit of it was the meds and a little bit of it was his anxiety, but I'm thankful that a lot of it was because I'm Mom.

He's been hugging me more lately.

Not his typical back into my arms hug so that I can kiss the back of his head and try to squeeze him quick as he wrestles away, these are full-on hugs! And he is getting so tall! He doesn't have a lot of meat on him, but he has long, manly arms and big hands and it is such an experience to have him give me real hugs and truly realize that he is not just a boy anymore.

Those are the kinds of things I notice for signs of growing up.

Our life isn't exactly typical so we don't measure success typically either.

I love talking with other parents of children with special needs because we love to giggle about how we celebrate such, seemingly to others, small milestones and accomplishments.

Like this milestone of being able to do a fancy hairdo on Baby and not have her take it out while screaming and pulling at her hair 5 minutes after it's done...



Sometimes I think I should try standup comedy and just talk about parenting children with special needs and how I say a lot of the same things that parents of typical kids say, like, "You need to learn to go potty!" -- only the one you're saying it to is almost 8 and not 2. Or "Stop licking your fingers and then dipping your hand in the lemonade!" -- only this is said to your 17-year-old who loves lemonade and this is at the restaurant and it wasn't even his lemonade... or yours... Or the experience of trying to calm your daughter who is terrified of new social situations and you are in a public place and everyone is turning to see what toddler is throwing a melt-down and they realize it's what they see as "A spoiled preteen not wanting to be seen with her parents."

I don't think I'll ever get over having to wipe food off my almost 18-year-old's face while trying not to draw too much a attention to the spit I'm using to wipe away the crusties from the meal previous that I forgot to wipe his mouth from.

Oh, and what about those cute leggings my daughter loves to wear and they look so cute on her until her diaper starts to sag and it looks like she's packing something back there... Baby got back!

Oh, the funny of Our Life.

Sister told me today that she didn't want to go to a Young Women's activity. I explained to her that they were doing yoga (one of her favorite exercises) and she says, "Nope! I hate yoga! Always hate yoga. No yoga for me. No yoga for you. No yoga!" These desperate shouts were closely followed by stomping, wailing and gnashing of teeth... quite literally.

Then when her ride showed up she was all smiles, got excited to say "hello" and bounced to her seat.

She puts a whole new spin on the emotional "teenage girl"... trust me.

Then I get a note from Baby's teacher saying that she was "grabbing another students butt" and when told not to do it she "Shushed" the teacher and said "no."

Oh boy.

First day of 7th Grade at the Junior High!


First Day of second grade and being on her own at the elementary Sister graduated from.
(I guess that's her "game face" to prep for the sport of school)

This is Lou! He's been one of our kids bus driver's every school year since we moved here in 2012.
 He just takes turns each year. This year Baby gets the privilege.


Never a dull moment... well, it may get a little dull at times... but if I let it get dull for too long, then the depression starts to sneak in. So, I've decided that not only do I laugh when something is funny, but keep the dullness lively by laughing then too... OK, at least smiling... not creepy like a girl sitting in the middle of the room staring blankly at the wall while smiling a overly big, toothy grin... Ew. Creepers.

Anyway, sometimes I get very overwhelmed by our tasks at hand and I doubt my knowledge, abilities and experience.

Then I have a friend contact me to ask how things are going and I share the latest experience and copy my response to Baby's teacher:

We started her on an anxiety medicine this summer which has given her the benefit of more speech and communication, but it has also added to her need for sensory input. I guess her anxieties held her back a bit and now she just goes for it! So, yes, as much sensory as possible. I will start making sure to give her deep sensory input in the mornings before she gets on the bus in the morning and I'll report to you when I do to see if it helps at all. It may also be a good idea to give her some strong sensory input when she gets off the bus, i.e. a big bear hug, time on the swing or wrapping tight in a blanket, etc.

I'm positive she's testing her limits, but she does need deep/pressure sensory input at least every 30 minutes. More if it's a rough day. A weighted vest or lap pad can help too.

And at home if she sasses we tell her firmly but gently (or she breaks into hysterical tears) "Baby, no. We don't talk like that. Use your nice words."

And when she does her babble or baby talk we remind her to talk like a big girl.


Then our friend reassures me that that was exactly what I should say and that I was right.

Mom win moment.

Let's all think about that success...

...

...

Yep, that was a moment of silence for quick passing of that "win" moment.

I don't always have "win" moments.

Rarely, really.

But, I guess winning the war is about all the battles you stand to fight, so if you put it in perspective that I have been parenting for almost 18 years that's about 215 mom wins if I give myself a generous average of one win per month...

Blah... who am I kidding. I am no numbers person.

I'm all about the feels. If I stay positive I feel like I'm winning a fair amount of the time.

I had to take this pic of him while waiting for them to take him back to the surgery room, but I wish this photo had sound so you could her the movie "RIO" cranked up load... and yes the TV is about 2 feet from his face.


If I'm being negative I probably won't be counting the "mom wins," let alone be grateful for them. As long as I keep moving forward and upward through my battles and not fall and roll back down, I'm going to stay positive about it.

So I guess I'm writing this to myself as I am trying to stay positive knowing that the decision was made today that surgery does need to be done on my ankle.

Yep.

That one I hurt all the way back in January of this year, it's not healing, so surgery it must be.

Sigh.

I hate surgery.

More than surgery, I hate anesthesia.

You remember at the beginning of this post when I talked about Brother's "flying colors."

Ya.

Who's going to hold my vomit bag and bear hug me while I have vomit dangling from my lip?

Maybe Brother will.



Monday, August 28, 2017

Variation on a Dream

I've been wanting/needing/dreaming of blogging for so long.

I'm here at the surgery center so that Brother can have some dental work done and I brought my laptop because I knew I'd have some downtime while waiting for him and thought it was a great idea to blog.

Now as I sit down to write about everything that has touched my heart, tickled my funny bone, dented my spirits, or harshly shown our reality are all memories that are, at the moment, not remembered.

Sigh.

So my hope of inward retrospection from what has been our life lately is not there... right now.

Right now I just sent Brother with the dentist and anesthesiologist on his way to the waiting room.



He was hesitant to go at first, pulled his blanket over his head and curled up into a ball.

When he heard his dentist, Dr. Shepherd's voice he was quickly obliged to follow him to the entry of the surgery room hall. As he walked away I said, "Good luck. Love ya buddy." He replied with a cock of his head and back to me as he strutted to the doorway, "Whatever Mommy!"

Everyone laughed.

Me too.

He is quite sassy and talks back a lot.

We do get after him when he crosses that respect line.

We also laugh a lot because he is letting his personality shine through.

It was a long 4 weeks of getting Brother up early on summer morning weekdays to get him ready to go to 6:45am cheer practices. If you read my previous post about getting someone to work with Brother you'll know how sad I was about not being able to be part of his life and his endeavors and having to hire someone to be who I wanted to be...



 Well, at his first opportunity to cheer for his high school his Buddy wasn't able to be with him.

I knew this ahead of time and prepped for a few days before that I would have to take him and that I would be there. With the initial announcement of this development he completely melted, yelled, screamed, and threatened self-harm.

By Friday he was totally calmed as I asked him to get into the car and he didn't yell at me, scream at me, or threaten to hit me during the drive there or pushing me away as I walked behind him to get the gym for warmups.

Then I sat there and watched him warm-up with the other cheerleaders and watched a bit of his personality shine out as he talked with and teased the girls.



I couldn't help but smile.

But, deep down I was just waiting for him to yell at me to "Go away!!!" so I just kept my expectation low.

Then they came out to the track to cheer for the football team and there was Brother leading the way with "confidence" plastered on his face.

The cheers started and I don't even know how to explain my pride, excitement and shock as I watched him do every cheer and almost every move!

He was a super star!

His teachers and peers kept approaching me to say how amazing he was and what a shock it was to see him coming, almost literally, out of his shell.

I couldn't stop cheering for his cheering, laughing at his antics and looking around to see who else was enjoying his talent and tenacity!

Someone sent a picture with him in it to his teacher, Marie, and she ran right over from her house (pretty close to the high school) with her daughter to come and cheer him on and beam in pride with all the excitement and dedication he was showing.

We both goggled about the progress he has made and how amazing it was to see this personality coming for everyone to enjoy.

So, I get to go to all of the games he cheers at, because he is so proud of himself, feels totally secure in his abilities as a cheerleader.

My dreams may not always come true, but I'm realizing that variations of dreams ain't bad either.

Tuesday, July 11, 2017

I'm giving up! I'm not doing this anymore!

That was going through my mind this morning as Brother was screaming at me again.

I say again, not because it doesn't happen often, but because it had just happened last night.

Marc and I endured an escalation of aggressive emotion and verbal attack when we reminded Brother of his conditioning for Cheer at the high school gym with his peers.

Brother is 6 foot 1.5 inches now, his voice has deepened, and although he is very skinny, he is solid muscle.

Being screamed at by him is intimidating to say the least, but it also wears you down as a parent and caregiver.

I've talked about it before that our kids, Brother especially, has such extreme anxiety of almost everything, especially social situations, that he will completely melt/fall apart/freak out to the point that an outsider would think we were either torturing him or that we were forcing him to do something he hates.

When he screams at me like he did last night and this morning, I start to doubt my mother's intuition and wonder if I am pushing him too hard and that I will hinder him in some way by pushing him out of his comfort zone.

Last night, after being screamed at for a solid 15 minutes... not typical teenage rant at a parent kind of screaming... more like a dying, underfed, over-worked, hormonal, emotional, disrespectful teenager. Trust me. There's a difference between your teenager yelling at you and how my teenager yells at me.

Just trust me. Don't tell me all teenagers are like that.

They're not.

Anyway, I was able to stay patient and calm last night and talk to him about the scenario of him sitting in his man-cave in his chair watching TV and listening to Shania Twain ALL day, EVERY day and not being with fiends, learning new things or having friendships. I told him that I can't handle the heartache, energy and and fear I feel every time Marc and I try to help him move forward to do something that he loves.

It's wearing, depleting, and nerve-ending on my emotions, my physical body and my spiritual well-being.

I just wanted to give up, but I wanted to talk to him openly about the situation.

He's really smart and understands everything you talk to him about, you just have to remember to talk to him like a young man, and when I do, it sometimes can calm him down.

We "talked" for a few more minutes and he came and sat next to me and let me give him a hug.

I felt accomplished that I had succeeded in communicating with him and felt like the morning would bring new hope.

Then I woke him up this morning.

As soon as he rose from his bed it was all out panic.

It took a lot of patience and a lot of effort and time, but after one hour my nerves were raw from the screams and the insults and the all out, yelling, but he had finally finished his shower.

I wanted to call his friend who was coming to get him to just forget it and don't come get him for conditioning after all.

But, for whatever reason, a prompting, or maybe just knowledge from trial and error, I persisted in getting him to his destination.

Brother was still screaming right up to the second that Lauren showed up to take him.

Then it was a calm, sweet, "Oh! Hello, Lauren" --giggle-- from Brother...

With no effort after that point he was off to her car and talking to her the whole way there.

My heart warmed a little as I thought, "Even if he only talks to her today and doesn't even do the gym, I'll be so proud of him for trying."

After Brother left I moved on to getting the 2 girls ready for summer camp and Baby kept yelling at me to get out of her room and then got upset with me because I had picked out the wrong color pull-ups. (eye roll inserted about here)

I was quickly reminded of how worn I was from dealing with Brother and all the feelings of falling apart or giving up and I felt myself on the verge of it again.

So with those thoughts came the guilt I feel, and Marc too, for not being able to be the kind of parents we want to be. It kills me that I am not the one to take Brother to all his activities and then watch and be proud of what he does. We want to be the involved parents so badly, but for everyone's benefit, it is better that we have someone other than us to get him through life.

It really stinks. I think of all the times that other parents will see Brother out doing things and wonder why his parents aren't there to support him. I don't want them to think that we don't care or that we just want someone else to take care of our kids. They will have no idea that he has two parents longing to be there for support and enjoyment.

I've judged before.

Everyone has, don't act like you haven't. It happens, naturally.

I've wondered before why a special needs person has no parent around or why someone else has to be there to do what a parent "should" be doing for their child.

I'm sorry I judged you.

I get it now.

It's not about being a lazy, neglectful, or unloving parent.

It's so much deeper than that.

Marc and I allow our hearts to ache so that our children can succeed in the best way possible. We want them to experience everything they possibly can. We have had to come to accept that sometimes, no matter what, they just don't do well with us. We, as their parents, are their refuge and safe spot, so instead of pushing past their comforts to do something they love and get joy from, they fall apart and either use us as the scapegoat or the punching bag.

I thought all this in my head in only moments, though it took so much to write it down.

After my mindful pity party, I begrudgingly went to Sister's room just waiting for the next ball to drop. Thank goodness things went well with her if you don't count the yelling at me when I asked if she had washed her hair yet. Oh boy.

I went and sat in my room and thought, "Meh. This is dumb. Why do I push them to do things? I'm so tired of having to put so much effort into getting them to do things they love or need to do, let alone things that are new or not as desirable."

After my resignation to give up there was a knock at the door.

Brother and Lauren were home.

I half expected Lauren to tell me that it didn't go well and that she didn't think this was going to work.

Instead, when I asked her to tell me how conditioning went with Brother and a cringing look on my face anticipating the news that he was awful, she said with a smile, "It went really well! His P.E. teacher from this past year of school is the coach so when he saw her he got excited and got right into the working out."

She also told me that Brother had turned to her at the end and said, "Now that wasn't as bad as I thought it would be."

That made me laugh.

Which was good because I needed to smile.

Within those few moments of her report to me of her time with Brother, I felt a twinge of joy that it had been a success.

I was reminded of all the many tender mercies Heavenly Father places in our paths.

I didn't know that his previous P.E. teacher, whom he adores, was going to be the coach there at conditioning. What a blessing that was. She even included one of his favorite exercises since he was there.

We are blessed with special angels in our lives who are willing and able to care for our kids where we can't or even shouldn't.

Later in the evening I witnessed another tender mercy when as we gathered with a couple of my siblings and parents at my parents' home for a Family Home Evening lesson.

At first I felt twinges of jealousy that Sister wasn't the one joining her cousins in leading the lesson and being reminded how different our children are. A few pity tears began to gather... then we sang the opening song.

Our kids never... OK, very rarely, sing songs with us during our Family Home Evenings and often are running off and I am singing as I run down the hall to fetch them or coax them into coming back in.

But here they were.

The three of them.

Brother is in the recliner chair to the far right... I couldn't quite get him in the shot... but he's there.




Sitting with their cousins and singing with vigor... well, Baby was vigorous (smiling and singing at the top of her lungs every word), Sister was shyly grinning as she sang and Brother had his back turned to us, but I could hear his deep tones every so often.

We all sang "I Am a Child of God."

My resolve to give up and not do this anymore waned for those moments. I found peace and joy in the time with my family and I was encouraged by our children's joyful participation.

I want to give up.

I don't want to do this anymore.

But, I learn often that it is not about what I want.

It's so much deeper that that.

It is about what I need.

What my Heavenly Father knows I need.

Just like our kids may approach something kicking and screaming and fighting it to the end, it isn't until they get past the fear and anxiety that they learn we, as their parents, are directing them to their own happiness and success.

I may be kicking and screaming right now, but I am slowly remembering how wonderful the destination is when my Heavenly Father leads me there.

Friday, July 7, 2017

The Year of Baby

NO! I am not making an announcement!

Trust me...

Have you ever watched "The Middle?"

If you haven't and you like my blog, or if you like me, you HAVE to watch it!!

Anyway, one of the main characters, 
Sue Heck always is so positive despite everything going wrong in her life... 
I love her! So she names her years so that it will be the best year ever, 
"This is the Year of Sue!"

Well, being as positive as I love to be, I am naming this Year of Baby!




Since I haven't really written much this year, I may have neglected to mention how much Baby is talking now. Starting about March of this year she started speaking in sentences!

Not as much grunting and pointing and indiscernible words, but actual sentences.

They were few and far between, but they were there.

Then toward the end of the school year she was talking even more and every body (friends and family) kept commenting in awe how much she was talking now.

I love hearing her little voice saying real words and saying, "Can I have a Pediasure, please," or "Say I'm sorry to me."

My favorite is hearing her sense of humor. A few months ago when she started talking more we were all in the van driving somewhere and someone in the car said, "I like (can't remember item)!" and someone replied with, "Me too!" Then, to our surprise, Baby piped up, "Me three!"

Ha ha ha ha!!

Marc and I looked at each other slightly astonished and proud and couldn't stop laughing at both the joke and our giddy happiness that our baby just told a joke! She told a joke in her own words! And it was funny!

Not only is Baby talking more, but she is starting to emerge from her solo career and is starting to play with others! I've especially enjoyed her budding friendship with my nephew who also has Fragile X Syndrome.


They both love and seek sensory input, so they are great playmates! (This is in Zac's back yard)
 She's also developed quite a saucy attitude along with her growth of vocabulary... not sure how I feel about that all the time, but I am grateful that I can see she can stand up for herself now. I just have to figure out how to help her tell the difference between standing up for herself and just being plain mean.

Pictured below she won't let her cousin, Jman color with her. She how she has her arm up in defense? Ya, we're gonna utilize that move when I teach her how to play basketball.


Baby is changing, growing and really becoming more than I initially thought she would be.


I hate to admit it, but I used to always think that she would be our lowest functioning out of our 3 kids. Now I wonder. She is showing so much personality, understanding and verbal expression that I have so much more of a brilliant future in my sights for her.

On the other side, I hate to get my hopes up. It's hard to hope for what might be too much. You kind of keep your expectations at a minimum---don't get me wrong---it's really more subconscious than something you actually decide to think. It just comes with years of struggle, heartache, and failure. Expecting less and rejoicing the mediocre becomes the normal. Oh, that sounds terrible, I don't mean it the way it's coming out. Nothing they do is mediocre to us. We really love to be excited and celebrate anything thing they do.

The other day I went out to draw on the sidewalk just because and Baby actually wanted to join me.

I was excited to have her there, but also insistent that she not draw on my spot.. you can see by the picture she tried to push that boundary as close as possible. Which, funny enough, it something I celebrated because she was understanding her will against mine and that was huge... anyway, here's what I drew:



I laughed when I got done because it kind of resembled me... Ha! 
But what I really want you to see is Baby's artwork:




She was so precise and calculated in how she was drawing this and even asked me for the black to do the eyelashes with!



I'm excited to have a partner while I chalk.

I might just have to designate her area with more definition... tee hee!

I'm so proud of her. She's such an artist and I find so 
much joy in seeing her talents and strengths shine.



And, yes, that is her walking Ranger, our dog... on our family walk through the neighborhood...with all three kids... and only one slight meltdown during the 2-minute walk... and that meltdown wasn't even from Baby...

It's going to be a great Year of Baby!

Sunday, June 25, 2017

A Turtle Destination

One day back while Marc and I were in Greece with our friends Tolis and Thomas we were driving along one day and saw a large turtle almost in the middle of the road looking as if it had been working on crossing the road to get down the hill to a grassy area. I was so excited to see this large turtle and had to get out of the car so I could see it up close. Marc jumped out of the car with me and I assumed it was so he could get a good look at it too and, maybe, a picture.



Marc let me enjoy it and then he picked it up so that he could take it quicker to, what he guessed, was its destination.

I was impressed with Marc's thoughtfulness and concern for this hard-shelled creature.



Once we were on our way in the car we all began to imitate what the turtle might be thinking when Marc took it to the grassy field across the road. Things like, "Excuse me, this was not my destination," or "I've been working since last week to get to the other side and now I'm back at the beginning!" and "Hallelujah! I thought I'd never make it here!" We laughed as we imitated "turtle" voices and thought up all kinds of scenarios of whether or not we had helped this turtle move faster on its journey or had completely foiled its plans.

I have thought about that Grecian turtle often in these last few weeks as I have tried to find a way to segway into getting back into my writing without leaving everything out I had missed.

Not that I thought the turtle would be my segway, per sé, but the direction I was going.

I've been so worried about documenting my journey for the family and friends who read this blog that I lost site of the point of this blog.

Writing is therapeutic for me.

That's it. For me.

I don't make money at this.

I don't get swag for this.

I'm not on anyone's deadline, due date, or subject matter.

I do this for me and my sanity.

It's my way of sharing with whomever may come across it can learn, grow, find relief, or humor all while giving myself perspective and release.

I see my life differently when I blog.

More as lessons to be learned.

Humor to be found.

Happiness to be enjoyed.

When I write everyday I am able to analyze my life, day, week or experience and see why it is the way it is/was and how it can strengthen me. I sometimes even share only to maybe help someone out there who might be struggling.

So I've learned that I keep trying to change my Turtle Destination... God knows where he is taking me. He knows where I will be safe, happy and enlightened. I get pretty frustrated when I am picked up and completely turned around right when I feel I am making progress and then, slowly, I begin to see why He picked me up and moved me.

This experience with the turtle also reminded me of Brother at his high school Prom this year. He went to Prom back in April. Yes, he went to Prom last year for his sophomore year, which was so awesome, but it was all arranged with his Special Ed Classmate and was pretty much arranged completely for him, date and all. This year was a little different because he chose his own date and asked her to Prom! She is a friend of his from junior high who has always been so kind and good to him.

I was so proud of him for taking this first big step of actually asking a girl on a date! My favorite story was when I told him he needed to ask his date what color her dress would be so I could make the corsage. His teacher went with him to ask her and when her response to him was "maroon," he exclaimed "Oh my!" and flopped (his version of the faint because he is so happy) onto the table in from of him.

Maroon is one of his favorite colors! Maroon and turquoise to be exact.

So I made sure to put some turquoise in too. I decided to make the corsage and boutonniere out of paper just to make it fun and original.



I had the opportunity to be their photographer so I got to see a little of the inside action and it made my heart so happy. Brother and his date were so cute together and she was so sweet to him, but also didn't put up with his shenanigans. It was so sweet to see her holding his arm and paying attention to him. It made my mom heart so happy I thought it would burst.





One of Brother's classmate's grandmother offered her house for the meal and gathering place before the dance. It was a huge success.



It's taken Brother a long time to get to this point, and I don't mean just the dating part, but the socializing and showing his personality part.

Sometimes I worry we push him too hard.

Sometimes I worry we don't push him hard enough.

Sometimes, we do know what is best for him and we do know he needs to be challenged.

Often, we have to pick him up, dust him off and steer him in the right direction and he definitely isn't too happy with us during those times. In the end, he usually ends up with a smile on his face that confirms to us that we did the right thing by pushing him out of his comfort zone.

Sometimes slow and steady doesn't exactly win the race, but it sure helps you to take in the scenery.

I think that while Brother has been moving slowly on his road of life, he has been taking in all the things he has learned and is able to put them to use after he has had time to soak it all in.

Sometimes he gets redirected.

Sometimes we wish he'd progress faster.

Sometimes we want him to come out of his shell (sometimes that can be literally if he has a hooded jacket to hide under).

Sometimes he needs his shell to protect himself through the journey.

Sometimes none of us know where the road is taking us, but we have learned to rely on the Lord and His timing and plan.

I never thought I could learn so much from a Grecian turtle... but I'm glad we crossed paths.