I wish millions of people read my blog...

just because that would be millions more who would know what Fragile X is.

I try so hard in my little world to spread the word about Fragile X Syndrome and all the things that are tied to it.

Do you know that people with Fragile X can also have autism?

That's why it is so important for those who have familial occurrences of Autism to be tested for Fragile X Syndrome. Check out this article FXS and Austism: Similar but Different

Do you know what FXTAS is?

It stands for Fragile X Tremore Ataxia Syndrome. You can read about that here.

Do you know what FXPOI is?

It stands for Fragile X Premature Ovarian Insufficiency. You can read more about that here.

All this time that you have been reading my blog did you even realize that I, as a carrier have to be aware of what my own future can hold along with my own children's.

That's why I try to spread awareness.

It doesn't just affect those who have the full mutation of Fragile X Syndrome but the carriers fo Fragile X also.

So, if you have a moment, share this video created by the National Fragile X Foundation at the 2012 Conference with some one else and maybe, just maybe it will reach millions...

...OK, I'll settle for 1000 (smile) (and a wink)

Born to Heaven

My mom's mom, my grandma, Ruby, died on Christmas Day.

I was able to see her on the Sunday before Christmas, sing to her, hear her laugh and feel her feet wiggle while I held them when we sang one of our last songs.

It was just my mom and me singing while my Uncle Roy and my dad listened in and chuckled along with us when we could get Grandma to laugh.

That's one of the many endearing attributes of my Grandma Ruby that I remember very vividly. She LOVED kids. Thank goodness I was a kid once because that is when she loved me most (insert laughter here). She liked to make people laugh, smile and anything in between.

There are so many stories to tell about my Grandma Ruby. Her life was a never ending string of service. She took pictures for the whole town of Highland, where my mom grew up. She documented everything. Served everyone. And loved everyone. She was so kind and so full of joy.

There was one time in her life, I know only because of stories I was told, that my Grandma Ruby was very sad. And that day was the day she lost her 14th and 15th children, James and John. She wanted to hold her twin baby boys so badly but she was too sick to even hold them when they were born and then they were buried.

Two baby boys born to heaven.

So when I went to see my Grandma, for what I knew in my heart to be the last time, I actually wasn't sad for her at all. I was so happy for her to be able to see her baby boys again and be reunited with her hubby, her Freddy.

I knew what my grandma was thinking as we sang "Christmas Time Without You." My mom, at first, didn't want to sing it because it seemed kind of sad to sing a song about being away from the one you love when, indeed, grandma would be without her Freddy this Christmas. But, I jokingly said, "oh mom, maybe she knows something we don't know and she'll be with grandpa on Christmas," and my grandma wiggled her feet and I felt the smirk on her face.

She knew she would be reunited with her husband on Christmas Day. In fact, I loved what my cousin, Rochelle, mentioned on Facebook the day she passed about our Grandma Ruby and Grandpa Fred, even after all these years not having to spend a Christmas apart.

So why was my heart heavy that day?

Well, it had felt heavy for about a week because my brother, Aaron, and his wife, Chelsea had lost their baby boy just 5 days before the night I visited my Grandma on her death bed.

It brought just a little closer to my heart how my Grandma Ruby must have felt never having been able to hold her sweet little boys here on earth.

Chelsea was 23 weeks along.

Chelsea and I had been talking the week previous about the news of my sister Kirsten's baby, Zac, just getting the Fragile X test results back. Chelsea informed me that she, too, was worried about their own son about to be born because her doctor was concerned that he, I'll call him Angel on this blog, was not growing adequately so they were going to keep a close eye on her and the baby. She didn't want to make this public knowledge to our family because she didn't want to worry anyone during the same time that we were all grieving the diagnosis of another child in the family with Fragile X.

Exactly one week from the day of hearing about Zac's diagnosis I received a call from my mom and I heard the worry/tears in her voice. I knew immediately that Chelsea and Aaron had lost their baby.

I had felt a strange feeling all day and just knew what it all meant when my mom called.

I had noticed earlier that Chelsea had tried to call me but I was on the phone taking care of some Fragile X Association of Utah stuff.

I tried in vain, all day, to get a hold of them. I knew something that might help them.

You've heard me mention it in a previous post, the organization, "Now I Lay Me Down To Sleep."

I had been wanting to become a photographer for them but just hadn't been able to because of my camera, at the time, not working. I wished so bad, now, that I had been on the ball and had been trained and admitted into the organization because I so badly wanted to take pictures for Chelsea and Aaron.

I finally sent Aaron a desperate message telling him to call me.

I told him all about NILMDTS and told him I knew it would be hard at the time, but they would be glad, later that they did it.

After much thought Aaron and Chelsea decided to do it and I got them in contact with their photographer, Heidi. I asked Heidi, if it was OK with Aaron and Chelsea, if I could be there to learn about what she does and how she does it.

When Aaron and Chelsea invited me to be there, I never knew just what an amazing, awe inspiring, heart wrenching, gut wrenching and sacred experience it would be.  I felt so privileged to be a part of it.

I am going to tell you my perspective of the experience while trying to keep it ... tactful.

Aaron had only seen Angel briefly after the delivery.

Chelsea had not.

She wanted to wait until I was there.

She and I were both shocked.

Nothing could prepare us for how a 23-week-old baby would look.

He was so tiny.

Tiny.

But, real.

So, totally and completely perfect.

Just, tiny.

Too tiny to survive this life.

In fact when the nurse brought Angel in I thought she was bringing in the blankets they were going to wrap him in. When she began to unfold these little blankets I saw this small little face.

Every detail was there. His, sweet, pudgy little nose (looked just like his sister Yaya's), forehead, round eyes, and his perfect little lips (that looked like they would soon grow to be like his mom's).

Then as Heidi, the photographer, took him to get him ready for pictures she peeled back the blanket further and revealed his adorable little hands and his perfectly perfect feet.

23 weeks.

He was not just a fetus, or a peanut or a thing.

He was a baby.

A sweet and charming little one.

His body was very frail and delicate and a wonder to see.

I loved him.

His strong spirit was there in the room and there is no denying there was life.

At the end of the photo session I had the privilege of holding him.

It didn't even feel like I was holding anything because he was so light, only around 7 ounces.

And then I held his hand on my finger.

Yes.

On my finger.

His hand was so tiny but every detail was there.

Right there laying delicately on my finger.

I smiled at him.

And then I cried.

Again.

As I thought of how I would never hold his hand again.

On the way home I cried some more because I ached knowing that Chelsea and Aaron were aching. They would never hold him again. They would never raise him. They would never watch him crawl, walk, talk, go to Kindergarten... all of it. They would never get that chance here on earth.

Their baby boy was born to heaven that day.

That's where he will be.

That's where they will see him some day when their life here on earth is done.

I am sure my Grandma Ruby was there to wish him a Merry Christmas.

If you want to know more about what I believe
about eternal families you can learn about it by clicking here.

When all 3 of your children have FXS...

I was asked by Bonnie of Fragile X Files to write about what it is like to have all 3 of my children have Fragile X Syndrome. This post is also featured in her writers series on her blog if you would rather read it there, or you can just go visit it anyway, because it's a great blog.

This post, for some reason or another has been hard for me to wrap my mind around.

I know there are many other parents out there who have 3 children with Fragile X Syndrome. I have met many of them. Some of them have an easier row to hoe, it seems to me, because their girls with Fragile X don't seem to be affected and are off to college and there are some who have all boys who are more affected than our only son. So it is hard to really put being a parent of 3 with FXS in a lumped category so I guess, really, the name of this post is "When all 3 of my children have FXS..."

In Our Life there are moments, and I have to look at them as moments because my days would seem so overwhelming and unproductive if I looked at the day as a whole... so, there are moments that are frustrating and irksome:

Sister bounding, bouncing and rolling uncontrollably, unable to sit for an entire meal—let alone 2 bites in one sitting.

Baby not talking to me about her needs, having to pull my hand to where she wants me to be and pointing to what she needs, yet being able to sing the theme song to Scooby Doo.

Brother fighting EVERYTHING social—wanting friends but not being able to overcome his anxiety to  hang out with them in a "normal" teenage way.

The tension between Marc and I can get pretty thick just because both of us are trying so hard to keep it together when all these little things seem to be piling up in our things-that-drive-you-crazy-after-so-long basket.

It's a daunting task to not only have to make sure one child is getting all the sensory input they need but to add 2 more to that ... just... well... I fail sometimes.

It adds to the stress when your children are so active they don't even want to take time to eat and when they do you have to cater so carefully to their aversion to certain textures, appearances and tastes. If you think it's hard to have one picky eater, times it by 3. It's inevitable that one of those will slip through the cracks and wake up in the middle of the night because they are hungry because you weren't able to figure out enough creative things or ways for them to eat that day and they just avoided food as much as possible.

It's really tough to know that your 2 daughters are both struggling with Autism on top of Fragile X, especially when you have only met girls who have Fragile X are so high functioning, off to college or at least holding a job or able to retain friends throughout high school. You wonder if you missed something as a parent somewhere along the way as to why your girls are so affected by Fragile X and so many girls seem to be overcoming the Syndrome.

It's so hard to see your 13 year-old son, who is wise beyond his 8 year-old mind's capacity but Anxiety consumes him and becomes his prison. I give Anxiety a capital letter at this point because it has become his close companion. I've always wanted my children to choose their friends wisely but this is one particular companion I wish would leave my son alone.

But, just when I get discouraged with these moments I am blessed to have the other moments.

The ones that make me laugh:
Like when my mom is reading a touching Christmas story to the entire family on Christmas Eve and Sister comes out in one of the hundreds of costumes hidden away in the back room and it is not just any costume, it is the four-armed purple alien costume. She doesn't think a thing of it and plops herself down in the center of the room to listen happily.

Or, when Baby gets a total "kick" out of certain things someone says like "R2D2" or "Let's go Party!" and she will try so hard to repeat it to you to get you to say it again just so she can laugh hysterically and goes red in the face.

And when Brother calls my sister-in-law, Chelsea, on VOXER (it's kind of like a walkie-talkie app for the iPod and iPhone) 28 times just so she can hear him play his violin several different ways.

Oh, and I love it when all three of my kids pile up and give me huge hugs and we all giggle until our ribs hurt.

The ones that make me smile:
When Baby brings me a blanket and turns her back to me and stands there while I wrap her tightly and then pick her up in my arms and "squish" her.

When Sister asks, "Mommy, do you love me?" everytime she does something questionable or she can tell that I am frustrated with something.

And when Brother tells me how proud he is of himself when he has overcome his anxiety, "I did good, huh, mom?"

There are also the moments that I cry happy tears.

I am thankful for those moments, especially because there are often frustrated or sad tears shed, it is nice to have the tender tears.

These are the kind of tears that warm your cheeks and your soul. Sometimes these tears come at the most unexpected times. Usually, though, it is when I am with my family or close friends seeing the supports we are surrounded by, knowing that we are not alone raising 3 children with FXS. That's when I cry those tender tears, I step back a moment to see that we are not alone in this journey and that so many people around us are waiting in the wings to buoy us up and carry us through the deep and there are still more at the shoreline to make sure we don't stumble in the sand.

It's January and I am still on Christmas

With the other posts about the amazing Christmas gifts I haven't even gotten around to telling you about our wonderful Christmas Eve at my parents house. I love when Santa comes and we get to tell him what we want for Christmas and then he gives us an orange.

It was fun this year (last year to be more exact) because I actually went into the back room with all the kids and some of us adults anticipating his arrival. They lights are out because we aren't supposed to see Santa, you know, not the real one anyway.

Santa coming to visit us on Christmas Eve has been a tradition since my mom was little, so the tradition has stuck.

This year, though, it was funny because I think my kids got a little confused with the how many visits we were getting and it all started on the Sunday before Christmas Eve.

First we had a Family Christmas Party with Marc's side of the family and Santa came to visit there too. When Santa first came down the stairs we all started to laugh because his "belly" was starting to flop down a little too low. Then we laughed as he sat down in his chair no one volunteered to be the first to sit on his lap until Brother got all excited and hopped up for the opportunity to be first. As soon as Brother sat down and looked into Santa's face he laughed and exclaimed, "Papa?! You look like a big pomegranate!" Santa wasn't too happy about being discovered as Grandpa, but, that didn't stop Brother from exclaiming it over and over again that this was "Papa!" Finally, "Santa" chuckled, shoved a box of candy into Brother's hand and said, kiddingly, "Take your candy and shut up kid."

Oh, boy the whole room was rolling at that point! That was the line of the day.

Everyone had their chance to tell Santa what they wanted for Christmas.

Later that evening when we were settled at home we got a call from our special friend Kris Kringle and said he would be coming for a visit. So when the doorbell rang we expected it to be him, but it was indeed another one of Santa's helpers, with Mrs. Clause and a helper elf. Well you can imagine Marc's and my surprise as were weren't sure how we were going to handle the situation if Kris Kringle showed up at the same time as his counterparts. The kids were a bit bewildered as they had seen Santa earlier that day already but enjoyed the company and the gifts that were given. And Mrs. Claus was a big hit.

As soon as they were out the front door, Kris Kringle snuck in the back door and surprised the kids even more... a 3rd Santa??? But, they were still excited to sing with Kris Kringle and enjoyed the antics of the moment. Baby, however was toast by the time the third Santa arrived and I had to take her downstairs to swing her, so she missed out on the third visit.

After the 3rd Santa was gone, I left to go say my goodbyes to my Grandma Ruby as we had been told she only had a few days left to live. Marc was outside in the front yard when I left.

Going to see my grandma, I felt lucky because it was just me and my mom, dad and my uncle Roy for the most of the visit. It was amazing to me how, even on her death bed, my grandma was still laughing as I told her jokes and made funnies with my mom. We laughed so hard and my grandma really enjoyed hearing us sing some fun and upbeat Christmas songs. There was one Christmas song in particular that will always stick with me as a reminder of that night, it is one that my mom wrote, called "Christmas Without You." My mom at first didn't want to sing it because it seemed kind of sad to sing a song about being away from the one you love when, indeed, grandma would be without her Freddy this Christmas. But, I jokingly said, "oh mom, maybe she knows something we don't know and she'll be with grandpa on Christmas." Little did I know how much truth was in that statement at the time, but more on that later.

When I got home from visiting my grandma, Marc had something funny to tell me. He said that after I left he went to go back into the house and the door was locked and he didn't have any keys so he had to ring the doorbell to get one of the kids to answer open the door for him. After the doorbell got done ringing, he could hear Sister coming down the stairs the stairs and heard her saying, "Aaahh... I wish these Santas would just leave me alone!"

Bwa ha ha ha ha! She thought it was another Santa! Love it.

So, come Christmas Eve, Sister was totally prepared to see the REAL Santa, tell him about wanting her Star Wars Legos (which she got) and get her Christmas Even Orange.

Accepting A Gift

Before I tell you about the amazing gift I received this Christmas I want to post a quote from the Second Counselor in the Presidency of the Church of Jesus Christ of Latter-day Saints, President Dieter F. Uchtdorf's talk given at the Christmas Devotional, 

"Isn’t one of the great joys of Christmas seeing the excited faces of little children as they take in their hands a wrapped gift that is just for them?

As we get older, however, our ability to receive gifts with the same enthusiasm and grace seems to diminish. Sometimes people even get to the point where they can’t receive a gift or, for that matter, even a compliment without embarrassment or feelings of indebtedness. They mistakenly think that the only acceptable way to respond to receiving a gift is by giving back something of even greater value. Others simply fail to see the significance of a gift—focusing only on its outward appearance or its value and ignoring the deep meaning it has to the sincere giver.

...

Every gift that is offered to us—especially a gift that comes from the heart—is an opportunity to build or strengthen a bond of love. When we are good and grateful receivers, we open a door to deepen our relationship with the giver of the gift. But when we fail to appreciate or even reject a gift, we not only hurt those who extend themselves to us, but in some way we harm ourselves as well." (you can read the entire talk here)

I heard that talk at the beginning of the month of December and thought about the gifts I have given and how I want so badly to have them received with excitement and joy and not embarrassment or indebtedness. Then I observed my reactions in hoping that I have been a humble receiver.

I had that opportunity so many times this Christmas season. It was truly humbling. Each time we received an anonymous gift, I, or whoever else opened the door would shout out "thank you" wishing we could thank them in person.

Sometimes, though, there are some gifts that are so huge they are very hard to accept. But, when it shows up on your doorstep you can't give it back saying, "Oh no, this is just to much to give, I can't accept this" or "I can't accept this, I just can't."

You take it from your doorstep, walk up the stairs and anticipate what you will find inside.

But, this particular gift that I found on our doorstep the night before Christmas Eve, was going to be one of those gifts that are hard to accept because of the costliness of the gift.

It was 10:30 at night and I was downstairs working on DVD movies for family gifts when I was startled by a LOUD banging at the door. I assumed it was my friends coming for a late night laugh so I bounded up the stairs, swung open the door with vigor and started holler out "Hello!" in my best Mrs. Doubtfire impersonation, but stopped at the "h" when I saw no one there to greet me. I looked down at the front step in confusion as our last 12 days of Christmas gift have already been delivered earlier that evening... there was another gift sitting there.

I seriously thought for a split second that Santa Claus himself had sent this gift because the wrapping paper looked just like it had been sent special from the North Pole. I grabbed it and walked inside to take it to the bedroom and show Marc. Upon further observation I saw that there was a card attached and it had my name on it, "Rachael" was printed in nice handwriting.

I opened it and started to read.

Immediately I was shocked and confused by the first line, "Rachael— We hope this brightens your Christmas Season! Take some AMAZING photos."

My camera's aperture gear had broken on my camera so I wasn't able to take photos the way I wanted to unless I got it fixed or replaced which neither was affordable until I could save up or get a tax return. I was actually sad about it because I REALLY LOVE taking pictures and bringing joy to families and individuals by bringing something special into their lives. But, I was also willing to take a break from it until I could afford to do something with my camera.

So, as I was reading this first line my mind began whirling with ideas of what could possibly be in this wrapped box. Then I read the next line, "Please know how loved you and your family is! Love, Many Friends"

At that point I started to cry.

Many friends?

That's a humbling thing to read.

Whatever was inside loved me and my family and was from MANY friends.

Then I read the P.S. "Another lens will be dropped off anonymously tomorrow. You can pick up the 3rd lens when you schedule your free class."

At this point my tears still flowed but I went numb. I think I was in shock.

Marc's jaw is dropped and he is listening intently as I read this all out loud.

The last line read, "P.P.S. If you need to exchange or return anything—please do. We won't feel bad."

I looked at Marc and kept saying stuff like, "No way. I can't believe this. No way."

As I opened it I saw a brand new camera box with camera, lens, extra card, extra battery, a camera strap and a gift certificate for one hour of free lessons in photography! It was even more than I had hoped for. I thought it may be something to add to what I had already, or something to fix what I had already, but, no, it was an entirely new start!

A whole set-up.

A Nikon camera with lens and another 2 lenses still to come!

I cried.

Then I went into shock.

Then I sobbed.

Then shock.

Then giddiness.

Then thankfulness.

Then complete humility.

It's a good thing that this gift showed up on my doorstep, because I really don't think that I could have accepted something this big without feeling guilty or trying to give it back.

I have no idea who did this, how many people were involved or who even thought up the idea to give me and my family this blessing, but i do hope that they will somehow know how truly humbled and grateful I am.

So, for whoever it was that gave me this gift I want to pay it forward.

I have been wanting to be a part of this organization I heard about a few months ago called Now I Lay Me Down To Sleep (I know long name...) anyway, they have photographers who volunteer their time to photograph babies who don't make it to this life for long, if at all. It touched my heart in a way that I wanted so dearly to become a part of it. (I never realized just how much this organization would touch my life until the middle of December, which I will post about later.)

Now that I have this new camera I am going to submit my images and apply to be a photographer for that organization and be able to volunteer my time to making a difference for grieving families who have lost a baby before life was really lived. 

I just hope that when or if I am able to give someone the gift of photography that they are good at accepting the gift.

Smile!

You can even give me a goofy smile, sometimes those are the funnest to remember! Sister loves being a ham!
But in this one, it's really the eye contact with the camera that I love!

The Miracle of the Turquoise Violin

SPOILER ALERT!!!!!!

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
DS

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...

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.

Drawn.

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.

Giggle.

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.

Never.

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.)
and
(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 fragilex.org