STX209, the trial that became a trial

It doesn't matter where we are in life, what experiences we have, or what lifestyles we have, there is always something that connects us to many others--strangers--in fact, as a group that seems to work as one.

Photo by Pointe Digital Photography and Videography

I have heard several times in my association with the Fragile X Community Melissa Welin quoted as saying something to the effect, "this is the best club you never wanted to join."

So when I hear all this news around me that a successful trial drug for Fragile X Syndrome has been cancelled because of funding, it breaks my heart.

My children were never part of the Seaside Therapeutics STX209 (Arbaclofen) trial. I do not have to come to an abrupt end of watching my child change in so many positive ways because of an ending trial. A trial that was supposed to continue until it was FDA approved.

I empathize with those parents of children who were on the STX209 trial. I ache for them, knowing the anxiety and fear they must feel as they await the last day they give their dosage of the trial medication and sit, watching, for all the great progress they have seen fade away.

There is no cure for Fragile X Syndrome. Medications only help improve some of the symptoms such as anxiety, ADHD, and cognitive abilities (to name a few).

I am sorry these parents are going through this.

I wish I could do something other than sign a petition to help them.

I wish I had all the money in the world so that I could help them and my own children to continue to discover how many things our children can do with medication help.

If you would like to read about some of their experiences I am including some links below:

Holly's Story

Melissa's Story

Bonnie's Story

Courtney's Story

Kristie's Story

From one mom who didn't have the experience of the STX209 trial to many others out there I do hope you know I am thinking of you often and wish you and your families the best and hope it will turn out better than you ever even dreamed.

"I am so excited that I love you!"

That's what Sister told me this morning as she was getting dressed for school.

She is such a happy kid. I love it. She reminds me to be happy to be alive! Seriously, she is just happy to be here and finds joy in the smallest of things.

I felt bad the other day though because they had a 3K run fundraiser for her school and I just assumed she wouldn't want to run that far so I didn't buy her a shirt or anything... I know, bad mom. Anyway, I got a note when she got home from school that she had run the entire thing! And fast! She ran the whole way! She even has a blister the size of a dime to prove it. She is so proud of herself I love it!

Speaking of running, Brother brought home his ribbons from his final track meet at Alpine Days. I am so proud of him!

5th place = shot put, Participant = self explanatory, 2nd place = running long jump, 2nd place = 100 meter run

P.S. This is my 920th post! Wow! I have a lot to say!

Memory Lane

We had a lesson in Relief Society at church yesterday that really got me thinking about my childhood and all the awesome things we did. It brought back such a flood of happy memories that I just have to write them down.

I'll never for get our "sand" pile. It was NOT sand really. It was dirty that had been uncovered from the grass and had more dirt added. So really, it was a dirt pile. To us kids, it was the best sand pile ever. I had this awesome green truck and trailer toy that went mudding and four-wheeling with the toy cows and sheep that would rattle around in the back of the trailer. I would pretend like I was my dad hauling cows in his old '76 Chevy truck. I loved watching my dad drive off with a cow or two in the back of his awesome truck. Back to the dirt pile, we would make cities and rivers. The water hose was usually near by while we played in the dirt. We needed it for our ponds, rivers, or to assist in packing the dirt for the buildings, fences and hill sides. One day we got a bit carried away and our entire dirt pile became a muddy swamp, but it was not enough for just our trucks and cows to get muddy, we wanted to join in. We (Jessie, Daniel, and, I think, Aaron too) ran inside to get our swimsuits on and we ran back outside to wallow, roll and sit in the mud pile. That was one of the best days ever!

We also used to go to the haystacks on the farm and make huts. We had the coolest huts! There were old cinder blocks left over from building the barn and metal roofing that may have been from the same. We made the mansions of hay huts, let me tell you. Our huts came fully equipped with cinder block table and chairs and we even had beds in our 3 room hut. I think we tried to make a second floor once. Once. Second floors and hay huts do not go together...

We had an old station wagon that sat in the back yard. I don't remember if it was one we actually ever drove or if it was just there for "parts," but we had fun with that too. We would play "monster" at night. One person was the monster and the rest of sat in the car and pretended like we were stranded in the mountains in a dark forest. And, of course, there were a few windows we pretended were stuck open, one was almost all the way rolled down and one other was part way down. The "monster" would sneak around the car amongst the tall weeds and other "antiques" that surrounded the car. The "monster" would bang on the sides of the car, climb up to the roof, quickly growl at the the closed windows with hands pressed in claw shape on the glass and sometimes would find the open windows and reach their scary arms through to try to grab us. We would get so scared and scream so loud. I think we freaked ourselves out just by screaming and panicking all on our own. Wow! We LOVED doing that. It was so much fun to be scared when we were with each other and friends.

Speaking of outside games, we used to play "kick the can." Remember kick the can? We had the best yard to play in because my dad collected so much junk that we had oodles of places to hide. Our clothes line was usually the jail. It was a metal clothes line and really hurt when you ran in to free the captured and ran in on the low side hitting your head on the T-bar, or the few times you went to escape after being freed and got clothes-lined on the way out. Tee hee! I think we were pretty tough as kids because it really took something like a concussion or something bleeding for us to stop playing.

I think my dad started feeling sorry for us always trying to make elaborate hay huts and decided he would make us a play house. I loved that play house. I had been mosquito infested sleepovers with my family and friends out in that play house. My dad had even wire a light out the the play house. It was so much fun. In fact, I get such a kick out of seeing all of our kids now play in there. It was a great little house.

I remember family reunions with my dad's side of the family where we gathered at the park, ate food, played games and, best of all, had a fish pond. The fish pond was the BEST part. Also, the Christmas parties on my dad's side were always great to look forward to.

I remember the reunions on my mom's side where we would all play volleyball and softball up at a park in the canyon. Those are the times I like to look back on my Grandma Ruby and Grandpa Fred. They were so proud of all the children and their grandchildren. Grandma would would smile the entire time. My grandpa didn't always participate , but he loved watching everyone and even liked to pick a team to cheer for. If he was rooting for the losing team he would quickly switch over to the winning team just in time. Tee hee!

My mom used to make homemade cinnamon rolls, orange rolls, garlic rolls, cherry or applies pies and turnovers, french fries, popcorn and kool-aid slushes. Oh, those were fun times.

We sang a lot at our house too. I remember my aunts and uncles coming over and we would all listen or join in on singing the many songs my mom had written while she, Aunt Aleesa, or Uncle Slade played the guitar. Oh, how I loved those times. We still do that even now and have even added the piano into our mix with my brother, Aaron's talent.

Music has always been a HUGE part of my life in so many ways. In fact it is usually songs that I think of when I remember things about my family. Like when our family would take drives out to Delta to see our Aunt Becky we would sing "Swing Low, Sweet Chariot," "You are My Sunshine," or another favorite was the round, "Don't Put Your Dust in My Dustpan." My dad always joined in on "Swing Low" and I think that is why, for most of us, that is still one of our favorite songs of memories.

We didn't have money.

We didn't travel much, if, really, at all.

We didn't even have many toys as kids.

But, we loved each other a lot and treasure the memories we still have of our best times.

I want to challenge anyone reading this to focus on the wonderful memories of their childhood. Believe me, I can give you my share of bad memories and bad times, but I am choosing to move forward with the good and use those times to strengthen me and help me be a better person, mother, wife and friend.

It is up to us to choose which path we take, the happy or the crabby. I choose the happy because that's what I want to be remembered for. When people think of their times with me I want them to think that they were happy times, and even if I do mess up and do something wrong, I hope that the good times are memorable and special enough that the bad won't be dwelled on as my defining moments.

We've all been made fun of at one time or another, not picked for the team, shunned by friends, bullied, hurt by others and ourselves. Let's hope that the good we do will outshine the things we do or say that are not as good as we could be proud of.

If you are struggling to find the good in your life now, or in the past, start now by being good to others and finding the good will become easier.

Hairy Post

Really, nothing exciting. I just wanted to document one of the few times Baby let me do her hair a little fancier than the usual. She was happy coloring so I took advantage of the situation and did and angel braid on her hair. I had to take a picture because it was such a great event (smile).

When I was little my Grandma Vivian taught me how to crochet. I remembered I love it, but pretty much all I could do was crochet a long line. But I loved it and I made myself a lot of hair bows and necklaces and bracelets and whatever else you could turn a long looped strand of yarn into.

A few weeks back we had an activity in Relief Society and we learned how to crochet some bracelets. I sat there with the other ladies learning all over again, but I couldn't help but think of my Grandma Vivian and what she had taught me.

Now I'm not really sure if the reason why I enjoyed that night so much was because I felt like I was connecting with my Grandma Vivian on the other side by thinking of her while I expounded on what I had learned from her OR if it was just plain fun! Probably a bit of both for me.

Anyway, I sort of feel like I did when I was a kid in the fact that I have learned one thing but I will make due with what I know until I get comfortable enough to move onto something else. So, I took the pattern I learned for the bracelet and made a headband.

See?

Winners

I haven't written anything this week because I have so many things on my mind and just can't seem to formulate into one post.

So this post, regardless of how I hoped to bring all my thoughts to one spot, is going to be a jumble of thoughts, feelings and small celebrations.

Remember when I posted about Brother's successful track meet, but told you I would let you know more about the one that didn't go so well at a later time. Well, I think it is later enough that I can post without crying about it.

I've mentioned before the hold anxiety has on Brother's life and the track meet that day was one of those days. Marc and I showed up so proud and excited to take pictures of our track star. But, it was not what we had hoped. Something, somehow had set him off earlier at school just before the track meet and he was falling apart that we were there. He didn't want us there. I figured it was just the typical anxiety that soon subsides as the event occurs.

I was wrong.

I found that out quickly when his coach asked me to help keep the kids in order for the long jump. Brother had been yelling at me from his place in line the whole time I was standing there and when it was his turn to go and he was right next to me he began pushing me and shoving me with some teenage force.

It wasn't pretty.

I kept a smile on my face, trying to talk to him and calm him down. I felt like the entire crowd on the bleachers was staring at me getting pushed around and yelled at by the typically sweet and funny teenager they have all come to love. I am sure they weren't all staring, but I am sure those who were watching were wondering what was happening.

The parents of the other special needs kids, I am sure, felt and understood my pain that I was hiding.

I finally gave up the fight to try to ease his anxiety and gave the list to another parent and walked away to watch him fall apart next to the long jump pit. I stayed because I knew, he really did want us there, yet really didn't all at the same time.

I didn't cry out loud but I cried in my mind.

Don't worry, though, I got over it because there have been so many great things that have happened since then.

Like the fact that we have started a new medication for him to help with his anxiety. I think that day was a revelation to me that he really needed to get some relief for his terribly controlling and overbearing anxiety.

It's working!

Amazingly!

I am so excited to see the MANY fears he had start to take a back seat.

Now, he still has anxiety but it is not as debilitating as it was a few weeks back.

He even asked to have a friend over today! That is a big deal, just in case you were wondering.

It has led him to the successful completion of 2 different hikes with the youth of our neighborhood in preparation for Trek. I am so happy for him. The youth where we live are astounding and never cease to serve our kids. I loved hearing the one story, in particular, about the first hike when they were going down a steep spot and a few of the girls were helping him down. I love to hear stuff like that.

And then, the other day, Amanda sent me this video she got on her phone:




I loved it for a few reasons, 1) My sister, Kirsten and my niece, Kelsey used to do this and Brother would sit along side them trying to do it--so it brought back sweet memories and 2) because Amanda's sweet daughter doesn't mind at all having Brother play alongside her.

Oh, and random photo of the day, This morning Brother looked like David Tennant of Dr. Who this morning before heading out to school:

He did not want his picture taken... this is the best I could get on my phone... but he still looks awfully handsome!

As I wrap up this post I wanted to share with you a post from 3 years ago. I think that track has been a big part of the successes and lessons learned here in our family. I ran across this old post as I was searching for some other things on the blog. I had TOTALLY forgotten all about this and I am, now, so grateful that I wrote it all down. It made me cry. Again.

WEDNESDAY, MAY 5, 2010

Running the "Race"

I know, you are waiting to hear about my Florida trip and to see all the pictures. But, before I get to that I have to post a memorable moment.

Yesterday was Brother's Hershey Track meet. Remember last year? 

(Insert from 2013 here, this photo is from 2009 and is one of my favorites of him)

The track meet was yesterday, Tuesday  and I only heard about it on Monday because of our vacation. It started at 9:30am. I had made an Occupational Therapy appointment for Baby at 10:30am. I was hoping I would be able to make it anyway. Monday night my mom and dad came for dinner so that they could see all our pictures from Florida. I mentioned in passing that Brother's Hershey Track meet was the next morning if they wanted to come.

At 10am on Tuesday morning my mom called me from the track wondering if I was there. I explained to her my situation and told her that I would get there as soon as I could.

I didn't make it to his track meet. I was sad, but, hoped that his Nana being there would suffice. I am happy and humbled to say, she did more than that.

My mom tells the story kind of like this, "I was looking everywhere for him and then I heard, 'Nana! Nana!' When I walked up to him on the bleachers he acted shy and embarrassed. It was so cold out there. His skinny little body was so frozen and he had two jackets on to keep him warm. I went and got an old, dirty blanket that was in the back of the van to keep him and his friends warm. They all snuggled in it. It was so cute. Brother is so skinny and so sweet. Then he was going to run his [100 meter] race. I stayed along the side of the track on the grass to cheer him on. He started running, his big jacket and hood over his face. Then a little more than half way through the race he realized no one was around him running anymore and he just stopped. They had all already crossed the finish line..."

At this point I am teary eyed thinking of my vulnerable little boy so unassuming as to what was really happening. Wondering if anyone was laughing at him or pointing at him.

My heart sank.

I felt for him.

Then my mom continues, "I kept cheering him on. 'Come on, [Brother], let's go. Let's finish the race. Run!' He just stood there looking around. So I started running along the side of the track with him to encourage him to finish the race."

And she did.

My mom ran alongside him and he finished the race.

Last.

Dead last.

But, proud.

Completely oblivious to anyone's tears as he crossed the finish line alone.

Am I proud?

You bet I am.

Am I thankful my mom was there for him?

For me?

You bet I am.

My family, and I have a unique priviledge of watching my children run the "race" day after day.

They run hard.

And I know, in the end, they will reach the finish line...

winners!

"I'm Sailing!"

We had so much fun today down at the rocky beach of Utah Lake... it doesn't even seem right to call it a beach, but...

Our friends, Chris and Jaclyn, took us out to the lake to enjoy their sailboat, a picnic lunch and just a great time with friends.

I was pretty worried about today's outing because I didn't know how the kids would do with staying out of the water and staying where I could see them. But! It turned out GREAT! We all had a blast. Marc was able to take time to go out with all 3 of the kids at different times and I just got to have fun behind my camera. 

It was such a beautiful day. 

It may have been a little too beautiful because there was actually not much wind, let alone a breeze, to catch the sails on the boat. So their short jaunts out became pretty long just waiting for the slight drifts of air to catch.

Our kids had so much throwing rocks into the water, wading in the shallow shore line, playing with Chris and Jaclyn's kids and eating cheese puffs to their hearts' content.

I loved today.

I just did.

Sunshine, happy kids, sound of water on the rocks, views of the snowcapped mountains across the lake and seeing my kids go on a sailboat for the first time ever.

I actually didn't ever go out on the boat, but I really didn't mind. I was content on the shore with my camera in hand. Maybe sometime I'll edit a few of these and even get some printed up to remind us of what a great day with friends that it was. It was definitely a great start to my Mother's Day weekend.

Brother and Baby walked the shore line together most of the time.

 

Smile!

Baby had so much fun climbing around on the rocks the entire time she wasn't on the boat, which was most of the time. 

Well, I tried for the group shot... we tried...

Meme (her name on this blog) was such a big helper with the kids, especially Baby. At this point, though, Baby had followed her in too far and decided it was to scary so Meme ended up carrying her to shore. Aw...

Ya, I'm strange... Avengers vintage t-shirt with my big-brimmed sun hat... OK, moving on.
Thanks, Marc, for the picture.

Almost ready to head out!

Hee hee! I just like this picture.

Sister was so interested in the boat but still to nervous to get on the first time.
She did finally get the courage to ride it at the end, and she loved it!

The water was FREEZING, but Baby didn't seem to mind at all...

Brother watching Chris in action.

And they're off!

Baby LOVED being on the boat and wanted to jump right into the water with all the rest of the kids,
Marc had to work hard to keep her ON the boat. No fear, I guess.

Then Chris brought out the sailboard. He and his kids were seeing if they could balance themselves on it...

Hew did it!
(name changed for this blog)

Meme did it!

 Cheese!!

And now Chris' turn to stand!

 

It really was a beautiful day!

And if you want to know why my title is in quotes
it's because it's a line from one of my favorite movies!

Fragile X and Autism Go to Church

It's all about routine.

Don't mess it up.

Don't forget it.

Don't change it.

And do not, I repeat DO NOT do any of that before entering the church building!

Here's how it all went down:

Me: "Marc, it's pretty hot today let's try parking in the shade at the back of the parking lot."

This was a bad idea. A very bad idea.

Sister: "NO!!!! NO!!!!! I hate the shade!!! I like the sun!! This is not the parking lot!!"

Everyone was already getting out of the car, we were a little late and, frankly, I am just tired of Sister always winning.

That was another bad idea.

Never care about who wins, just get used to losing.

Me: "Marc just head in with the other two and I'll get her."

I thought some self-talking or calming techniques would work.

I wish I would have realized the error of my ways before Marc was out of sight and in the church building with the other two kids.

Sister continues to scream, "I hate the shade! I want the sun! I don't like the shade! The shade is stupid!"

She is saying all this while I chase her in zigzags in the parking lot trying to avoid the moving cars, the parked ones and the odd stares of the worried people who thought they were witnessing a kidnapping.

I resort to taking her by the arm and thinking that I would force her to walk in with me even if she was screaming.

However the walking thing was not an option. She hung onto my arm like a monkey baby and I had to buoy up my strength to carry her with one arm across the parking lot to the doors.

I think my "mother adrenaline" kicked in because I wasn't crying, hurting, panting or sweating as I carried my 7-year-old by one arm into the chapel.

I thought for sure if I could get her into the chapel and start her routine again maybe she would be able to forget or forgive that we messed up the parking routine.

I'm sure it was quite a scene as I carried her in and plopped down on the second row that is always saved for us.

I sat relieved that we were in there and all would start well again. I started sweating and breathing heavily now that my adrenaline had subsided and I had to pull out a notebook to fan myself like one of those old Southern ladies and Baptist Church.

Sister was pouting on the floor under the bench in front of us and I was in hopes that she would just stay there and be quiet...

Hope...

A funny thing sometimes.

Baby joined her under the bench for a few minutes and then after a few minutes of solace two little girls popped out from under the front row bench and decided to plop down in the isle.

I thought they would be fine until Sister started to have a meltdown right there in the front row in the middle of the isle.

I reached up, handing Baby to Marc and grabbed Sister to bring her back out into the hall and she went limp again so I was, again, carrying her with one arm while I opened the door to leave.

Sigh.

We walked around the halls for a few minutes.

We walked outside for a few minutes.

I asked if she was ready to stop whining and sit in church and she whimpered an audible "yes."

We quietly re-entered the chapel and as we sat down, Sister's heart began to race as she firmly informed me, "Mom, where's the bread."

The priesthood was passing the sacrament but were now passing the water, which meant that the bread had already been passed.

I whispered to Sister that we would be able to get the sacrament after the meeting, but, hey, that was NOT the routine... I panicked a little until I saw Marc signaling to the young men at the Sacrament Table that we needed the bread. The sweet young man went over to speak with the Bishop to make sure it was OK and then walked down and passed Sister and I the bread.

Tears started to roll down my face. Partly because I was exhausted physically but I had just been deeply touched spiritually. They made sure to get us the water as it had already passed by our row and Sister seemed to be happy about her routine beginning to resurface.

It was testimony meeting.

As soon as I had the chance to get up I stood and said, "If any of you have seen how church started for me today you would know that I want to shout from the rooftops... shout from the rooftops that this church is true, I know it is or I wouldn't be here." I smiled. I really am thankful for my knowledge of the gospel because there is no way I would put myself through all that if it wasn't true.

After closing my testimony I went and sat down and within 2 minutes I was taking both Sister and Joslin out to play with the nursery toys. Thank goodness for the nursery toys. Saved my life that day.

Another life saver was the dear friend who stepped in to tell me she would stay with the girls while I listened to the rest of the sacrament meeting.

Tender mercies.

Oh, and Sister was happy as a clam once she went to class.

Her routine had finally gotten back to normal.

...

Right on Track

A proud mommy just has to share pictures...

This picture is from the track meet that Brother was actually have a bad day at.  I only show you this picture because I wanted you to see the small cheering section that had come over to watch and cheer him and his teammates on. (I'll tell you more about the experiences at this track meet later.)

This is at his last track meet, the 100 meter. He is the one to the left with the purple jacket on. He ran so well that day!

This is him coming in second place! Yay!

I love this picture for so many reasons. One of them, though, is seeing, again, the dedication and love his track coach has for him and how much she wants him to succeed. She is awesome!

He's flying!

He definitely jumps farther than he throws...

We sure love this kid! In fact, Marc and I just came in from talking to two young ladies who stopped by  to visit with us while we sat by the fire. It was neat to hear them say good things about Brother, how funny he is, how much they like him and how they would defend him if anyone ever teased him or made fun of him. And this conversation is after we hear all the great things that went on this morning when he went on a hike with some of the youth and church leaders in our neighborhood. (I'll tell you more about that later too.)

It takes a village...