Wednesday, December 26, 2012

The Miracle of the Turquoise Violin


If you have kids who believe in Santa this may not be the post you want them to read.

If you have kids who believe in the good nature of people, they'll love this post.


"Mom, guess what I want for Christmas..."

"Umm, a horse?"

"Nope. A turquoise violin."

When I looked up at Brother from whatever it was I was doing at the time, I kind of laughed, "Oh, really? Well, I don't know about that sweety. That is a pretty tall order and I don't think that a violin is in the budget we give Santa."

"A turquoise violin mother!"

"OK, OK, a turquoise one... which I really don't think you will get. Maybe you could think of something else."

I really didn't think much of this request when he brought it up at the first of December.

Our kids go through phases. Obsessive phases sometimes. They can't seem to move past a certain idea or want. Last year he wanted a Harry Potter train and a Nintendo DS. As much as I wanted to do that, it just wasn't going to be possible. But, a few days before Christmas he switched his focus to more Thomas the Train trains to add to his growing collection and we had convinced him that the DS just wasn't a possibility. Luckily I had foreseen that coming and hadn't gone out of my way to get the Harry Potter Train.

When he came up with the turquoise violin request I assumed it was the same thing...

Then he brought home his Christmas list he had written up at school.

Turquoise Violin
White Christmas

He crossed out the DS because he still remembers from last year that we couldn't do that.

But, heck, let's ask for the possible, right?

A Turquoise Violin and a White Christmas.

No problem! (total sarcasm here)

He was so proud to hang his list on the fridge.

Then that same week is when he got to go to Stringtown and sat on Santa's lap to tell him he wants a Turquoise Violin. (you can read about that here)

I was starting to get a little worried with Christmas being about 10 days away...

Marc and I decided that we would just make him a pretend violin... you know, because we weren't sure if he really wanted to play a violin or if he just liked the image of it he had showed my on his iPod that he had found on the internet. I mean, really, how could we possibly afford a violin, especially a turquoise one?

Then, my friend Tanya emailed me and asked if we had a plan to get Brother his turquoise violin. I was a little shocked at first that she knew about it, but then remembered that she was there at Stringtown to hear Brother's request of Santa.

While I was waiting for her reply I had talked to Brother trying to prepare him that he may not get a violin and he VERY confidently informed me that Santa was going to bring him a turquoise violin. I don't think I have ever seen him so sure of anything. I really, honestly thought that he would give up on the idea until I heard him say that with such conviction.

How could I possibly not get him a violin now?

He had been on YouTube the entire week taking violin lessons! He would come up to me and show me how to hold a violin and how to hold the bow.

He needed to have that turquoise violin.

But, how could we do it, if we couldn't afford it?

It was the Friday before Christmas at this point! What were we going to do?

I called my brother-in-law, Jeremy, to see if he could maybe cut a toy one out of wood. He was very willing but also suggested that I look online for a used one and even said that I should ask my mom to look for one because she was the miracle worker when it came to finding things you need cheap/used. I had to agree with him, but there were no yard sales this weekend and I wasn't sure if my mom knew how to buy things online.

Kirsten and Jeremy texted me to let me know they had found a violin online for $25 and another one for $40 and thought I should look into those. I agreed and told Jeremy not to worry about cutting out the toy violin.

So, I frantically started looking online for used violins under $50 (I know, crazy, right). There were 2, believe it or not. There was a half size one for $25 with a hard case but no bow and there was a $40 full-sized one with the case and a bow! I emailed both sellers in hopes to here from them soon so that I could get the violin painted and ready for Christmas Day.

Then I heard back from Tanya that night and she informed me that her father, now deceased, had fixed instruments for a living and had some old violins that were in need of repair that she was willing to just give us to see if we could make something of it, quickly, for Brother. So, I thought, what the heck. It's free and this way if he is just wanting it to want it he will at least be happy to have one regardless of whether it was in disrepair... it just needed to be a turquoise violin.

Saturday morning I heard back from one of the sellers I had emailed, it was the one that was for $40 with the case and the bow. I responded that I had figured something else out, but thank you for responding to my inquiry. Then a few minutes later Tanya and her husband showed up in our driveway and brought 2 violins in their cases to choose from. My heart was so full because of their generosity and love they had for Brother in wanting to help him have a Merry Christmas, I wanted to hug them and squeeze them to death! Finally, I chose the one that I thought might be the least work to fix up, wrapped it up in a blanket so that I could disguise it as I walked through the house and took it into my bedroom to hide it.

As I walked past my phone I noticed that I had received a text while I was outside. It was from my mom and it read, "Found violin!"

I quickly called them to inform them that I already had one and not to worry.

My dad answered my mom's cell phone and sounded quite happy, but rushed.

"Hey, dad don't worry, we got a violin. It's in need of some repair but, hey, it was free."

"Too late, I am already on my way to get it. It's actually not far from your house. We picked it up for $30 and they were asking $40 but your mom told them the story and they went down on the price. I guess they have a daughter with Autism so they understood your situation."

I tried to explain to my dad and mom that it would be OK to just use the one we got for free but my mom, almost in tears, said, "I know he needs this one. I know he will play it and this is the one he needs to have."

Later into the conversation I realized that they had bought the violin from the same person I had contacted earlier only a few minutes after I had declined the offer.

The lady selling it offered to remove the strings from the violin for my parents to make it easier to paint. (Now remember all this is happening the Saturday before Christmas.)

My mom searched everywhere for turquoise spray paint while my dad sanded the varnish from the violin so that it would hold the paint. My mom couldn't find turquoise spray paint anywhere and was in a bit of a panic thinking she was going to have to paint it by hand with a brush. But, she did it. She painted it by hand and they hung it from their fan overnight to dry. My dad inspected my mom's work very closely to make sure the brush strokes were smooth. I would call my mom every so often to see how it was coming, wishing I could be a part of all the magic but I also knew it was impossible with my kids and all that was going on that day.

The next day, Sunday, they put on the varnish and let it dry. All the local music stores were closed, of course, but luckily there was a dear man in their neighborhood who plays the violin and offered to put the strings back on for them.

Knowing that there was going to be a violin for him on Christmas morning made my heart soar even more as I watched his face on Sunday morning at church during the Christmas program as one of our friends played some beautiful numbers on her violin. Brother's mouth didn't even close while he watched... I'm not sure if he even remembered to breathe...

Sunday night I was able to get the violin from my parents and we had it all ready for him on Christmas morning.

On Christmas Eve my sister, Kirsten, who plays the violin, played a beautiful number for us and Brother was mesmerized and so intrigued watching her every move and made sure to inform me that Santa was bring him a turquoise violin.

Christmas morning he was so anxious to find his violin wrapped under the tree.

He told me later after he had observed it for a bit, "Look at these brush strokes, Mom, the elves did it beautifully."

Yes, they did Brother, yes they did...

He hasn't stopped playing in since he got it. Yesterday he played it from the time we finished presents, to 4 o'clock that afternoon. His collar bone was a little sore he told us so Marc's mom is going to make him a pad to put there for when he plays.

First thing I heard this morning at 7am was his violin.

He loves it.

He really is so proud of himself.

What could possibly be better than seeing him be proud of himself.

This was a gift to him and to all those around him.

I think it is truly inspiring to hear that so many people would work so hard to make his dream come true for Christmas!

Here's the video of him opening it on Christmas morning. My favorite part is when he peeks inside. Oh, I love his smile. It's contagious. (And you'll have to turn the volume up so you can hear what he is saying because I am so loud... sorry)

He hugs his violin a lot too.

And if you like the story of this little Christmas miracle, wait till you hear about what I got for Christmas! That post to come later...

Saturday, December 22, 2012

Joining the Club

When you have three children who have Fragile X Syndrome you have this weird and annoying tendency to analyze every child around you, stranger or familiar, and wonder, "Could they have Fragile X?"

I can't help it. It's this innate instinct, honing out and looking for the "one" that might have been missed. I don't think it's because I want all children to be like my children. I think it is because I don't want any other parents to wonder like I did, "What is wrong with my child?"

That was my thought process back then...

"What's wrong with Brother?"

For 5 years my world was filled with focusing on all the things that were "wrong" with my first born child while the whole time I worked and fought so hard to show every one what was so "right" about him. The "rights" didn't often outnumber the "wrongs," but they did outweigh them.

Brother couldn't nurse well as an infant which brought on jaundice and many long hours feeding him with a syringe filled with milk I had pumped all because even the bottle was an undesirable task to him because of his oral sensory issues and extremely low muscle tone. He couldn't roll over, hold his head up very well, walk, crawl, run, heck, he couldn't even fall right... really, he didn't have the inborn sense (for most) to put out his hands in front of him when he fell! Did you even know that putting your hands out in front of you was even a developmental instinct? Trust me, it's one you want your toddling toddler to have because face first into the cement is a really awful way to break a fall.

But, Brother attracted smiles everywhere we went. People were drawn to that little boy.


Like magnets.

I had this little baby hiking back pack that I would put him when I went grocery shopping or wherever and people were always smiling at me (him), waving at me (him), and old ladies and gentlemen would stop me just to be able to tell me what a strong and happy spirit Brother exuded.

Those were the "rights."

The undeniable love for life he showed. No matter what, he was smiling. He made us SO HAPPY!!

So when my sister's little boy was born I, of course, immediately tried to determine if he had Fragile X.

When I first saw him it kind of set me back.

It was like looking at Brother when he was a baby.

I listened to my sister and her husband explain to others what a calm baby he is and how he is just so tired all the time but when he was awake he was always so happy and rarely cried.

It sounded like the exact things I said about Brother when he was a baby.

I kept telling myself to stop analyzing everything about little Zac. "It has become my obsession!" I thought to myself. I needed to stop looking at every child wondering if he or she has Fragile X.

So I distanced myself a bit. I usually love to see babies but I couldn't bring myself to visit Zac because I couldn't stop analyzing him and I didn't like that about myself. But then came the day when I offered to take his newborn photos. He was about 4 weeks old at this point.

I was analyzing everything about him the entire time. I was reminded of Brother with every thing he did.

He made me smile.


Good grief, he was absolutely adorable!

I mean look at this! How can he not make you smile?
I was the first person my sister, Kirsten, called on Monday, December 10th.

She had the results from Zac's blood test in her hands.

"He has Fragile X."

We both sobbed.

It was a surreal conversation for me.

I never thought that I would be talking to my own sister about having a child with Fragile X.


I had hoped that because God had given me 3, that no one else in my family would have to do it.

Then, it hit me.

She was going to understand my world more than I would have ever dreamed any of my siblings would.

She would have someone to guide her through all the world that is Fragile X.

She wouldn't have to wonder for 5 years, "What is wrong with my son?"

She knows now. After six weeks. She knows Zac has Fragile X.

But, because we know what Fragile X is, we know that Fragile X isn't a blueprint to what our children will do or become but only a field guide to what to look for and appreciate.

I pray that Kirsten, my sister, will be able to find joy in this different journey than she has had with her daughter who is neither a carrier of Fragile X nor full mutation. I pray that she will find the strength to focus on the "rights" and not just the "wrongs."

But, I thank Heavenly Father for giving us the opportunity to have Zac in our family.

I wish I would have taken a video of Brother when I informed him that Zac has Fragile X... He smiled so incredibly big and began jumping up and down with joy, squealing with delight! It was priceless and unforgettable. It was like I had just told him that Zac just got a special pass to be in his club.

Sister's reaction was funny. I told her, "Sister, Zac has Fragile X," from another room and I heard her start to cheer, "Yes. Yes... wait... what is that? ... oh ya... Yes! Yes!"

Their reactions were priceless.

And then that gave me an insight that Zac's diagnosis is not the news of doom and dispare but he just joined a very special club of the elite.

I saw this picture today and thought about our world before we ever even knew Fragile X existed in our family.
My Dad, my Mom, Daniel, me and Jessie at Easter time in our front yard... Aaron and Kirsten weren't even around yet. (Check out my awesomely curly bangs... gotta love those pink sponge curlers.)
(Yes, my mom has an Easter basket hanging around her neck... she's funny like that.)

Me, holding my baby sister, Jessie. (I would have to say that my kids look a LOT like me!)
We were so happy and blissfully oblivious to Fragile X then.

But, look at my entire family today...

Our family is just as happy and blissful...

I would never, ever, ever, trade spots with anyone else in the world if it meant leaving this family and the love we all have for eachother...

Fragile X included!

Fragile X Syndrome is the world's leading cause of inherited mental impairment and the leading known single gene cause of autism. More information can be found at

Friday, December 21, 2012

Girls, Gifts, Gingerbread and a Grateful Heart

I was pretty excited to be able to go for a girls night to make my very own gingerbread house.

You know how it is when you make them with your kids. You want so bad to help them make it look like a work of art instead of the graham cracker trailer house it ends up to be.

So it was so much fun to be creative, eat candy to my heart's content and laugh with friends.

It was also very nice of our host to have made, cut out and baked the gingerbread and made the frosting... it made the night quite relaxing for the rest of us.

This was my end product:

back and gazebo
This was supposed to be the pond that the sour patch kids were skating on but it looks like the ice wasn't quite frozen...

This just made me giggle.

So, I guess I have a better picture in my head of how my fantastic-all-by-myself-gingerbread-house would look...  but at least you can tell it's supposed to be a tree
I'm tellin' ya, I really think I look good in my self group shots... wait until you see the next one I tried...
Here is what my gingerbread house looked like the next morning:
I'm glad the kids enjoyed it
So, when you have 3 children who have special needs and are in special needs classrooms you end up with a lot of teachers, aids, and bus drivers. It's hard to come up with something creative and meaningful so that the people who are involved in your children's lives will know that they mean a lot to you. When you have 30 teachers total to give to, you want it to be meaningful and inexpensive...

So this year, I found these ornaments/sun catchers at the dollar store and thought that would be so cute for my kids to paint and give.

Brother worked so hard on his:

So did Sister:

They were so proud of themselves and so was I. But, I ended up not so proud of the dollar store... as soon as the paint dried it flaked up and fell off.


Back to the drawing board... I bought cornbread muffin mixes and called it a day.
The tags say, "I know it sounds CORNY, but Christmastime would have been NUFFIN without you!"

We had a well-deserved Sister's Day and made ornaments and had lunch. It was fun to see our 3 little girls together on the couch watching a movie.

Marc and I had the opportunity to have lunch with and catch up with some very dear friends of ours, Matt and Kandi. We haven't seen them since Baby was a baby (tee hee, that sounds funny). We hung out for hours talking and catching up and just enjoying the friendship we still have.

So here is that picture I told you to look forward to...
My teeth are so big that I couldn't even get them all into the picture.... Sheeeeessshhh!
Here's one that Monique took of just us adults... er, at least it was supposed to be just us adults... Brother...

And last but not least, certainly not least, we have been the very lucky recipients of gifts for the 12 Days of Christmas!

It has been SO MUCH FUN!! My kids are giddy with excitement every evening as the await the secret Santas door knock. Brother was so excited one night when he saw Santa sneak by the window and was very proud to yell out to Santa that he had been caught. (Ah, seriously, bless that kids heart)

Out of the many awesome gifts we have received for the 12 Days, socks have been the most favorite! But, they are not just any socks! They are Christmas snuggy socks and I had to talk Brother into taking them off after 3 days so that I could finally wash them!

I am so thankful for all this wonderful stuff that has been going on in our lives because behind the scenes there have been some life-changing trials for our family. It is things like what I have just posted about that truly lift our spirits and remind us of the true meaning of Christmas.

Thank you, if our secret Santa's happen to be reading this. You have added some true joy to our lives this month and we are grateful.

Thank you to our friends and family for making this Christmas Season a memorable and special one.

And we thank the Lord every moment for all of our blessings, even when we don't realize they are...

Friday, December 14, 2012

Fragile X in Stringtown

If you are asking Fragile what?

Then you are new to this blog.

For that answer, in a nutshell: Fragile X Syndrome is the world's leading cause of inherited mental impairment and the leading known inherited cause of autism. For a more in depth definition of this broad spectrum that is Fragile X, you can go to

If you are asking about Stringtown, well then, let me tell you a little bit about the experience my children had there last night.

When you have children with special needs, especially special needs like overstimulation, hyper-arousal, anxiety, autism spectrum disorder and mental impairment you don't get a whole lot of phone calls from your friends that start like this:

"Hey, I know you and Marc are going to the movie tonight for a date, but we just got reservations for 16 people on the Stringtown Polar Express train ride and wanted to know if we can bring Brother and Sister with us to see Santa and ride the train at 8:15 tonight. Would you be OK with that?"

Now, I am not even referring to the specific-ness of the request as much as I am referring to the fact of how RARE it is for someone outside of family to voluntarily take our children into the middle of potential chaos willingly and without us being there to help out during any chaos that may occur.

I was kind of shocked that they even wanted to take on this challenge.

Then I was touched.

And then, I got worried, "I don't know if Sister can handle it. It's her bedtime, she may get overtired and then she'd come home to the babysitter and it will be hard on her. I don't know, maybe it will be too much."

But, Amanda assured me that there would be other families going with them who also love my kids and my kids love them. She reassured me that my kids would be well taken care of and that they would do what they could to help her out on the way home to help calm her down.

Hesitantly, but very excitedly I conceded.

My kids deserve these experiences even if they are hard for them. We don't know how they'll do until we give them the chance.

Marc and I went to the movie a little worried, especially because I had left my phone at home so I wouldn't be able to be contacted by Lindsey (our babysitter) or Amanda until I got home.

When we got home I anxiously asked Lindsey how Brother and Sister did for her when they got home and she informed me that they were so happy and so excited and hyper from the experience, but nothing bad, just happy-hyper. After Lindsey left I quickly checked my phone and I saw all the pictures that had been sent.

As Marc and I looked at them our hearts soared to see the smiles on their faces and to see what a great time they had.

Let me tell you more about Stringtown.
Image from Stringtown Website

This is all a service this neighborhood renders of their own good will. They only take donations and must have huge hearts for bringing the spirit of Christmas to a community. From what I understand (and it is little because I have just learned about it) a neighborhood built a train track through their little area and run a train on it during Christmas time where they have sites and pictures to look at. You are then invited into one of their homes to see Santa, Mrs. Claus and some of his elves. He takes the time to talk to each child and then they get on the train again to close the night focusing on the reason for the season--Jesus Christ.

Now, with that little explanation of what it is, let me give you briefings on what I heard from others:

Brother, this morning before school: "Mom! I saw Santa Claus! I told him I want a turquoise violin!"
All while saying this he is bouncing up and down with his hands gathered under his chin and a HUGE smile on his skinny little face. I have tried to explain to him that we can't get him a turquoise violin, but now that he has told Santa, he is sure it will happen...

Sister, this morning before school: "Mom! Mom! Mom! Mom!! I, I, I, saw SANTAAAAAA!!! I saw Santa! I sat on his lap! I told him I want Star Wars!"
All while jumping up and down and flopping over the couch arm and running back and forth giddy with complete and total excitement. Her eyes were literally twinkling.

Brittany who came over to borrow some flour this morning and was one of the people in the group last night: "I felt so honored to be a part of all that. It was so precious to watch your children. I just felt so honored."

Amanda, whom I had to get all the lowdown from this morning: "Rachael, they were so good. They were so good. Other than a few times of reminding them not to run ahead because of their excitement, that was all. They were so happy. It made it such a fun experience for all of us to see how truly happy they were and I don't think it just affected us who know them but all those around them. And it was so neat to see how quiet they were when we rode on the train at the last, seeing the pictures and life stories of Jesus. They were so quiet."
Waiting for Santa among the toys and toy trains, so excited.

All the kids (friends of our kids) who were in the group! Love these kids!

I am so thankful that this neighborhood, known as Stringtown have created such a wonderful place that my children can truly enjoy Christmas. I can't explain, really, how happy this made all of us and how excited I am to start a new tradition ever year. I know my kids will be looking forward to it!

My heart continues to be filled with the spirit of Christmas!

Tuesday, December 11, 2012

Like a Bra

Have you ever been compared to a bra?

A brazier?

A over-the-shoulder-boulder-holder?

Why would you want to be like a bra?

Well, I never thought I would want to be until my youngest sister gave me a letter with a little gift to go along with it.

The letter said something about what a great sister I am and all that stuff... you know, the norm... ha ha ha ha! OK, really, it was such a sweet and unexpected thank you and was straight from the heart. But the gift was just as great as the letter because it was something I hadn't heard before. It was a little pink plaque with fancy beads strung on a wire to hang on a wall.

It hangs in my bathroom by my mirror so I read it everyday and this is what it says:

This is not what my plaque looks like but I wanted to design something cute for my post, so here it is. I hope you got a kick out of it like I did.

And tomorrow, at my house, is Sister's Day. We'll be getting together to eat, talk and maybe make some jewelry! Maybe I should print these off for my sisters to hang by their bathroom mirrors...

Monday, December 10, 2012

A Free Train Ride and a Holiday Dinner

Marc and I love free.

Brother loves trains.

Sister and Baby don't care and don't understand.

So the choice was obvious.

We would all bundle up to wait in line for 45 minutes in the winter wind to ride for an hour on a train they just introduced to our area.

OK, OK, so we really didn't plan on waiting in the cold, winter wind for 45 minutes. Our kids have Fragile X, remember? They are overly sensitive to sound and feel! But, sometimes we don't really realize what will go through to make them happy in the end, or at least that day, to make Brother happy...

We should have known that riding a new train on a free day would mean there would be lines a mile long but we had hope because we know how much Brother loves trains.

So we made it through the wait with, surprisingly little, crying and wailing and finally got onto the train. There wasn't a lot of room so we walked around the three levels and various cars till we could find a spot. That stressed Sister out more than the wait in the cold. I had come prepared, though, and had my bag full of snacks and coloring books, so we sat down and proceeded to inform Sister would have fun once we got going.

See, look how happy Brother is!

But, on a train that is made for public transit there are a lot of stops. So, for 10 minute stretches Sister was fine while there was movement, but at every stop she cried and yelled to go home. The snacks and coloring books did not help unless we were on the move.

You can see how "happy" she was in this picture...
(I am thinking that, by the girl's body language sitting behind, that she was having just as much fun as we were listening to Sister whine...)

Baby just wanted to wander through the train cars and explore. It was very crowded so it wasn't easy to maneuver around with her but we did it to keep her happy.

Here's a snap I got of Marc before we were separated in the divide and conquer strategy of handling Sister and Baby while Brother was in complete train heaven.

He managed to snap one of me too (which is amazing as I usually do not appear on my blog unless I take a picture of myself... tee hee!)
I know I look tired. I am. Most of the time these days. I am worn out. But, I'll leave that for another post...

So when we finally got off at our "home" stop and walked off the train toward our car, Sister over ecstatically exclaimed, "That was so much fun!!!!!"


I guess you never know how much the anxiety she is going through is covering up...

Later that night, our sweet, dear Lindsey volunteered her time to come take care of our kids while we went to the first ever Fragile X Association of Utah Holiday Dinner!

I thought this would be a good idea for some bonding for the parents and grandparents of the Association. It was kind of a last minute deal but I had been so excited for it, and frankly, after the day we had with Sister, we were excited to get out with a bunch of adults.

It was so neat to meet with friends I already knew and even meet new ones. I loved hearing the stories of everyones children and how their families are affected by Fragile X. It was an inspiring and daunting experience in the fact that I was able to see what other children were doing and wondering what our childrens' futures hold. It was also so nice to tell stories and know we all understood what it is like to be in those shoes, but also to see how different all our experiences were and that our children are not made from cookie cutter molds just because they have Fragile X.

Here is a photo of most of our group, I forgot to get it before our newest friends had to make it to an appointment.

I must say that our waiter was amazing at serving us and making sure we had all that we needed, but he is a terrible photographer... bless his heart.

Wednesday, December 5, 2012

Singing at Christmas Time

There has been all kinds of singing in Our Life lately...

The most exciting was hearing Baby sing "Jingle Bells!" We had never heard her sing it before so we were so excited to hear it, but just got a short clip:

The funniest was when my mom showed me this animated Santa she picked up at a yard sale:

The most inspiring was hearing Brother at his second Junior High Concert for Christmas.

I am not allowed to share the video so I just have the photo to share, and it is of him before the concert started and he's looking for us. (Although, as he was watching me type this post he informed that he was actually looking for his teacher, Mrs. S.) 

This time Marc and I, my parents and Marc's parents all got to come. Oh it was so precious! We were all so proud of him, and Marc even admitted he was close to tears watching him.

The most thought provoking was singing with my mom and my aunt for some people at the Mental Hospital. I couldn't help but wonder about the lives of these individuals as I looked out into the audience. What was the reason they were here? How serious were there mental issues? Do they have family who come to visit them at Christmas time?

My thoughts ran back to my kids thinking of some of the issues we deal with here just dealing with autism stuff and the stress it brings in Our Life, which got me wondering about the mothers out there that care for children who have mental illness like schizophrenia or bipolar. I felt empathy for those parents.

I was so happy that, if even for only 30 minutes, I would be able to bring them some joy at Christmas. It was so sweet when one older man came and told me about the time he sang "Silent Night" in German out in the trenches during the war (bless his heart) and to see the twinkle in his eye when I joined in with him for the first few lines. (My grandpa taught us that song in German when we were little kids and we listened to him sing it often.)

So to all the moms out there who have children with mental illness or mental impairment please have a Merry Christmas and love them no matter how hard, no matter if it has to be from a distance or up close. Hang in there.

Monday, December 3, 2012

She was an Angel

Our kids have never participated in a live nativity before. We haven't typically done that in the past wards we were in when our kids were actually old enough. We have done them as a family... which makes me think we need to try that again this year, the last time I remember doing that was Sister was still a baby.

They had the primary-aged children participate and Sister was asked to be one of the angels. I had been asked to help get the angels quietly on and off the stage on cue. Luckily I had three sweet helpers (smile) who helps keep them from trampling each other.

To start off, my kids started going wild as soon as they saw all the people filling the cultural hall of the church building. And I don't mean wild like "typical" kids, I mean overstimulated/hyperaroused wild. I couldn't keep them under control. Marc was trying to get dinner plates for them and I was trying to keep them from rampaging the stage props and other people sitting at the tables. I couldn't take anymore and, frankly, didn't even know what to do to help them and still keep them there so that Sister could participate in the Nativity. At this point I was just wanting to go home and crawl into my shell and let me and my kids fall apart in comfort. Instead, I took the two youngest into an empty room and was about to cry when my friend, Amanda, walked in and asked if she could help. She took Brother to sit with her and Sister went to sit with Brittany and I brought their plates to them and all was well. They did so well with them.

I was so thankful to Amanda for showing up at just the right time and to Brittany for taking on another active child at her table.

Between Marc and I we were able to get Baby to eat a little something and I was able to eat in between all of that, but then she was off. She wanted to run the halls. But then she heard music playing. Some of the youth were singing Christmas songs with piano, cello, and violin accompaniment. Baby ran toward the music and sat on the floor with her sweet "friends" just in front of the performers. It was so sweet.

Then came time for all the children to get ready for the Nativity.

I was a little worried about how the night would go for Sister.

But, she was an angel.

She really was.

She was so cute with her classmates and friends and was all smiles.

Nervous smiles, but, nonetheless, smiles.

I was able to sneak quickly of stage to get a brief look at her as she stood there like and angel along with the other angels and smiled.

My friend on Facebook sent me this picture. Sister is the 3rd angel in from the right.

I wanted to cry because, not only was there a sweet spirit in the room because of the Nativity, and my heart had been calmed because of all the help my friends rendered me so I could actually enjoy the night, but because my sweet little daughter was up on a stage with many other children doing exactly what she does best...

                                          being the best angel she can be.

Saturday, December 1, 2012

Surprise Gift (homemade even!)

Have you ever been given something homemade?

Have you ever been given something homemade by someone who barely knows you?

Have you ever been given something homemade by someone who barely knows you, yet knows your family so well?

Have you ever been given something homemade by someone who barely knows you, yet knows your family so well just because she cares enough to listen to you speak about your children?

We have.

Just today.

Well, actually, yesterday.

It was given to us and we were instructed to open it today on the first day of December.

I wasn't quite expecting a gift from this person.

She is very nice, indeed.

I admire her, her talents and her amazing tenacity to live life no matter what life throws at her.

But, I have only known her for 8 1/2 months, and really mostly because she is in our Relief Society Presidency.

I never would have thought in a million years that she would give us something that she had made.

Now I don't know if she gave out many, a few or only one to us, but it made me feel like she really, really cared about our little family.

My kids thrive on schedules, routine, and knowing what is coming up.

Christmas time is horrendous because they think every single day of December is Christmas. They don't understand that it is 25 days away.

I tried and advent calendar once. It was a cute little book where you opened a window or door to this cute little house each day counting to Christmas Day.

I only lasted a few hours as Brother and Sister ripped off ever flap hoping that it would make Christmas come that very day.

I have wanted to come up with another advent calendar ever since then. One that would make more sense to them and that they wouldn't be able to tear up.

Well, today, our neighborhood angel sent us a gift that will always mean a lot to me, and, I hope, our kids.

A homemade, adorable, creative, fabric, door-sized advent calendar!

There are 24 little buttons on the Christmas tree that you hang all different kinds of
little felt ornaments from, like an angel, a train, a wreath, all kinds of cute little things to
hang on the buttons until Christmas Day comes. Sister was so excited to hang the
first ornament, and Baby had a great time deciding which ornament we would hang first.
They are so excited to put another one up tomorrow.

I wanted to find her tonight at the Christmas Party at the church but had my hands and mind full with the needs of the kids that I missed to opportunity. I called her when I got home but there was no answer. She doesn't read my blog (at least I don't think she does). I hope I get to see her at church tomorrow and give her a huge hug and a thank you for her thoughtful gift.

 There are some gifts that, for some of what seems are the smallest of reasons, become the most treasured gifts.

If this story touched your heart I'll give you a link to what would touch your heart an lift your spirits in preparation for the holiday season. Check out what I will be watching tomorrow night here.

Friday, November 30, 2012

This is NOT What I Expected

Have you ever wanted to try a new hairstyle because you see everyone else doing it and you think, "hey, that looks so cute and so easy." When you picture yourself with your new "do" you picture yourself looking like this:

But, instead, you look like this:

Eeeeeesssshhhhh!!! Not what I expected...

Tonight I could hear Baby and Sister giggling together. Marc went to check on them...

Aaaww... Cute. Right?

Not if you see where they are...

On the VERY top shelf of Sister's Cubby! I am not quite sure how they both got there but, there they were.

Again, NOT what I expected.

Sister has been having an exceptionally hard time this last month with stimming. It has gotten to a point of completely taking over her life at home. She can't eat without flopping backwards on the couch, she can't watch a movie without running from one wall to the other and she can't live through a day without lining and stacking and piling books.

She's done really well at school, but she releases it all at home.

I thought maybe she needed a change in meds so we called her doctor and he got her in as soon as possible so that we could help her with the problems she was facing at home.

After two hours with the doctor explaining all the issues she was having at home although she was doing well at school he explained to me that all these issues are just how she deals with life. This is her way of living in the world we take for grantid every day.

He talked about increasing some of her meds but suggested trying to do a LOT more sensory input for her when she gets home from school. Things like rolling and bouncing on an exercise ball, swinging, pressure rolling on the floor or with a ball and jumping and running together. Also to incorporate more routine in our after school agenda.

I was very relieved to not have to worry about doing new meds or starting all over with that stuff, but, it was NOT what I was expecting.

How do I do sensory input activities with both of my girls all day long.

We came home from her appointment that day and I did gross motor sensory with her on the exercise ball in between swinging Baby in the swing because she needed her sensory too. And Brother decided that he benefits from sensory so then he and Sister started kicking and teasing each other for control of me and the ball.

Not what I expected.

However, the rest of that day Sister did not flop over the couch or stack books all night and she even ate all her dinner!

Just what I had hoped...
not what I expected.

Brother even seemed more involved with the family instead of isolating himself.

Not what I expected.

I am still in the process of trying to get financial help for our kids through the Department of Services for People with Disabilities (DSPD). Sister has been on the waiting list for almost 5 years, while Brother had been denied so I am filing for Brother and Baby.

Yesterday was our intake interview.

I brought all three of my kids, all by myself to the Government building.

I wanted them to see, for real, what life is like with 3 kids who have FXS including 2 that have Autism Spectrum Disorder.

I don't think it is what he (our case worker) expected.

Brother was hitting, pushing, and pinching me under pressure of answering questions, Sister was screaming at the top of her lungs and ripping up and throwing paper all over the floor while trying to punch anyone in her way, Brother dumped the two laundry baskets of toys on top of Baby, Sister ran out of the room and to the other side of the building all while I was chasing her down and our caseworker was in the room with the other two kids, and (are you tired or laughing yet) Baby had a stinky diaper that left it's mark in the air.

This was what I expected.

What I didn't expect was that the caseworker then said that we had no documentation of Brother being mentally impaired.


...  ...


There was the results of the blood test right in front of him proving that he has Fragile X Syndrome! That is the definition of Fragile X Syndrome.

Fragile X Syndrome is the leading cause of inherited mental impairment...


Sometimes I feel like all our advocacy for FXS is in vain when I talk to "professionals" like this.

I explained it to him again and I am not quite sure if he got it.

He was very nice.

Very sweet to my kids.

I just wish he knew more about Fragile X.

And I was just too darned flustered to explain everything to him.

Then Sister started freaking out and Baby started throwing things at me and him, ripping everything she could get out of my purse, rolling and writhing on the floor and I just started to laugh and said to him, "You're lucky I'm on Prozac, because I really shouldn't be laughing."

I don't think he expected that either.

After 2 long hours he was finally able to collect the 30 minutes worth of interview material he needed.

As I sat in there crawling around on my hands and knees cleaning up all the toys and torn paper he calmly asked,

"So these 3 are your only children?"



Let's hope that he got a full dose of what Our Life can be like and can push forward and getting us some help.

Wednesday, November 28, 2012

Holiday and Birthday, Same Time--Different States

I bet most of you didn't know that I spent Thanksgiving and Brother's 13th Birthday here at home while Marc and Brother were in visiting family 800 miles away!

Yes, the magic of blogging, you never truly know what really goes on behind the scenes... until I reveal them to you (sneaky smile inserted here).

It was all very last minute. I thought Marc needed to get away to see his brother and sister. He also really needed to see the beach—I think it rebuilds him each time he sees it and gets to breath in the sea air and walk on the shore. His parents were heading out for a couple of weeks and I thought it would be great for Marc to tag along.

Marc thought about it; missing Thanksgiving with me and the kids, missing Brother's 13th birthday.

But then, he thought, "hey, I could bring Brother with me..."

I was so excited for them to have a trip together. They have never done this before, so it was going to be a groundbreaking experience for both of them.

So, the Monday before Thanksgiving Marc arranged with his parents to only be gone for one week instead of two so that Brother didn't miss too much school, nor Marc too much work and then they were packing.

Brother was NOT excited about going away.

But, by now, you have all learned how that goes... he doesn't want to go, we strongly encourage him, he ends up having the time of his life.

So, I will spare you the details and just let you know that he got into the car on Tuesday morning at 5:30 am with only a small wimper and his horse blanket wrapped tightly around his body and over his head. (Thank goodness the L-family gave him his birthday gift early...)

I didn't quite know what to think of only me and the two girls at home...

Should I be sad?

Tee hee!

Nope I had fun! It's weird how, when you have 1 less child (2 if you count the hubby) how much easier it seems...

Notice I said "easier," not "easy."

Thanksgiving came and I was having a blast making apple turkeys and disguising turkeys with my family and the girls. I am glad I had that time to just have fun and not miss my boys. It was all a very good distraction.

This is a video of our Thanksgiving Fast Feast, one and a half hours of eating mashed into just under 2 minutes. I just thought it would be something fun, but, I must say I think my dad ends up being the main star of the show:
Music is from Mindy Gledhill. I love her music! And you can download a free song of Mindy's here.

We got pretty competitive with our Turkey creations. Check them out:

Above and Below are all the Disguised Turkeys we created, there were some VERY creative ones. You really need to get close to see them all. We were having so much fun that some of us did 3 or 4 of them.

These were a couple of my favorites: Aaron's astronaut and Sister's Fox... I love that sister even did spots for her Fox Turkey, so if that Turkey was dancing would you call it a Turkey Trot or a Fox Trot? ...

Here we are at Jessie's table with all our materials (andy and apples) to make our apple turkeys

I have to zoom in on my two favorite... mine (on the left) and Aaron's pig (on the right) -- he always has to be the different, more creative one...

Here are most of them.
And here are the turkeys that fell asleep while we had fun... can you tell they are related? (my dad and his brother) I kind of got a kick out of seeing the baby doll all cuddled up next to Uncle Jeff... yes, that is a doll.

While me and the girls had Thanksgiving fun, so did Marc and Brother:
Marc's brother, Aaron, and his wife, Julie whipping up something great for the feast.

Brother keeping busy

I was jealous, though, because Marc got to meet our new nephew, Nate, and our new niece, E. Poor little E broke her arm that week while rollerskating. And doesn't my new nephew look like Superman?

Here's Brother eating with his cousins at the "kid's" table. So cute. I totally remember those days as a kid.

Me and the girls slept at my mom's that night. My mom and I went to see what all the hubbub was about at the Black Friday Sales while my dad stayed with the sleeping girls.

We went.

Were overwhelmed.

We left.

When we got home I made my mom stay up with me and watch an episode of The Twilight Zone.

The next day we played outside while we watched others work. Then we ate my mom's yummy pizza.

Baby love's the baby mule

Joel and Uncle Jeff were the ones working the hardest.

Sister wasn't done partying so that night (Friday) we slept at Jessie's.

The next day on Brother's big 13th birthday I tried taking the girls to the movie with Lindsey's help. Baby lasted about 30 minutes and then I had to take her out in the hall and let her run. Baby escaped from me at one point and ran into and open movie theater door and ran all the way to the front of the theater before I could catch her. The crowd was laughing about her almost getting in because it was a rated R movie and they new this little preschooler wasn't supposed to be in that theater. A few people called out as I herded her back to the doorway, "She almost made it!" It was embarrassing and funny at the same time.

I finally took her out to the arcade where she had more fun on the pretend motorcycles and cars.

Sister soon joined us and I told Lindsey to go ahead and finish out the rest of the movie while the girls played. They didn't want to leave anyway.

Then we got home and I wrestled (literally) the girls the rest of the night until we were all in bed.

This is how Marc and Brother spent his 13th birthday:
This is the tree that we always get a picture on when we come to this beach, so Marc decided to keep the tradition.

Brother LOVES his cousins and was so happy to be at the beach with them for the day.

Marc wishes this would have been him. He did talk to the surfer afterwards though.
Someday we both want to try surfing!

Bree found a starfish and Brother couldn't have been happier

He really didn't want to let it go. He wanted to keep it for a pet.

They got to see the monarch's during their migration, those are all butterflies! Amazing!

Brother does not want to be 13 so he keeps telling everyone he is 12... or 21...
When they got back from the beach Marc's sister, Amber had pizza and a cake all ready for Brother's Birthday Party. Aw. So sweet. I was glad she had a party for him since I couldn't be there to do it. Thanks, Amber.

They even sang to him and did candles...

you can see that his little cousin, ended up helping him out with that:

Little Teddy was a big help while Brother hid under the pillow...

Happy Birthday my big 13!