Fragile X Awareness Day

Today is Fragile X Awareness day. Our goal today (and every day) is to make just one more person aware of Fragile X and what it means. I can give you all of the medical jargon and stats, but I want it to be more personal today. I want you to know not just the numbers, but the effect it has in our homes.

Our lives are filled with IEPs and ARDs, Occupational, Physical, and Speech Therapists. There's the pediatrician, neurologist, ENT, developmental specialist, and mental health doctors, too. Our daughter's teachers become our friends; we spend so much time communicating with them throughout the years, it's inevitable. And homework is a nightmare we avoid at all costs.

We have headphones and chewies for emergency situations, and can never go anywhere without food in our pockets. There's always a Plan B which may go into effect at any given moment and we know the best way to make an "emergency exit" no matter where we're at. To-go boxes are our friends, and the playground is our savior.

We have learned the art of deep pressure massage, brushing of limbs, and de-escalating meltdowns. We can tell the difference between a lack of desire and an inability to control the body to do what needs to be done. We don't make plans too far into the future, because we don't know what to expect from one day to the next. But any plans we do make need to be marked on the calendar, discussed in our home, and be flexible to allow for moments of deep breathing and dug-in feet.

Much of our time is spent reassuring our daughter that we love her. She perseverates on the unknowns, the what-ifs, and the potential bad. Her anxiety stalls her and we are constantly put into the position of knowing when to push and when to hold back. Forcing her into a situation can either prove to be exhilarating (like the time we made her ride the water tube ride) or a disaster (like the meltdown that happened after we made her swing at the piñata and it didn't break).

If we're not assisting our Fragile X daughter with these things, we are explaining the "unfairness" of it all to her younger sister. We have to discuss with her why she has a larger share of the workload. We have to solve equations of what she's capable of versus what her sister can do versus the total amount to be done, and how much slack we, as the parents, have to pick up in order to not stifle the spirit of our youngest.

Our lives are filled with brainstorming ideas for how to handle situations we may come across. When she turns 16, she won't be getting her driver's license. When she turns 18, she'll question why her younger sister is driving and she isn't. How will we explain that? When our youngest is older and meets the man of her dreams, gets married, and has children of her own ... what will that look like for our Fragile X daughter? How will we help her? What will our role be in 10 years, 20 years, forever?

What we DO know is that we spend a lot of our time trying to educate people about Fragile X. We talk about it to everyone we meet, trying to figure out a way to sneak it into a conversation. We go to Washington, DC to talk with our representatives and request continued funding for studies and research. We enroll our children into drug trials, brain studies, and speech and language development studies. Fragile X Awareness walks are held all over the country and conferences are attended by families from around the world.

What we DO know is that, while Fragile X sucks, we wouldn't trade our daughter for anything. We do what we can to decrease her struggles. We pray for a drug to help her to function to the best of her ability. We seek for ways to make her life easier. And we continually spread the word about Fragile X.

If you would like more information, please visit the National Fragile X Foundation or the FRAXA Research Foundation

Defeated

Do you ever feel just absolutely defeated? Drained. Done.

That is the way my life feels right now. I have no control over anything. I can't sleep. I stay tired. I have no energy. I have pain in various parts of my body that I can't help. And if it doesn't hurt, it goes numb.

I have been to doctor after doctor and taken test after test. I have been a pin cushion. I have given pints of blood. I have had electrode stimulation and x-rays and MRIs. I've been pushed and prodded. I've been stuck with needles and left with bruises. Physical therapy? Yup. Drugs? Yup. Cortisone shots? Yup.

Anything helped? Nope.

So, every day, I wake up just hoping for a good day. One that I can get through without wanting to cry. Without needing to take more Tylenol, Advil, Ibuprofen, whatever gets me through the day. I go days without taking anything because I know my kidneys need the break, not because I don't need the pain relief. Those days are the worst.

Then I go to bed praying to be able to sleep. I try to get my brain to stop and my body to relax. I finally fall asleep only to be woken back up by a numb hand, a hurting shoulder, a back that resists movement. I wake up hours before my alarm clock hoping to just be able to go to sleep again.

About twice a month I find myself letting my coworkers know I will "be late to work" because I have to sleep in or I won't be able to function. The guilt associated with that weighs me down, but I know that it's the only way my body can handle just one more day.

Most of the time on my way to work, as I have time to think, I fight back the tears that develop as I realize that I am not in control. Doctors can't seem to figure out what's causing the pain, but I know it's there. Medicines don't help and most wind up making me sick. I have no control. I am at a loss.

I feel defeated.

Sing ye, oh Little Monkeys!

I try to let L do as many "normal" things as possible. One of the things I've allowed this year is riding the bus to and from school. She was excited at the prospect of it and seems to really enjoy it. I did not, however, think about the possible repercussions of this new-found freedom.

How did I not think this would be an issue? How many videos have I posted on my Facebook page of her doing this? How many times have I made comments regarding this?

What is this?

Singing!

Non-stop singing. She's been singing "5 Little Monkeys Jumping on the Bed" for at least 3 years now. Her latest obsession is "Sweet Child of Mine" by Guns and Roses, but she always throws the monkeys in for good measure. But regardless of the song, it's a non-stop sound track for her life.

During the first week of school, K got off the bus and said, "Mommy, the boys asked me to make L stop singing and rocking."  I told her I would talk to L and for K to just be strong. I talked with L.

Last week a kid, as he was getting on the bus, looked at me and asked if I could make her stop singing. I just stared at him as he got on the bus, my tongue tied. I talked with L again.

Today, a different kid looked straight at L and said, "Can you please not sing on the bus? It's annoying."

My first instinct is, naturally, to protect my kids, so I immediately snap at him, "No, she can't." I mean, I think I snapped. Maybe I didn't, but I know internally I did. He just kinda looked at me like I was joking, so I repeated, "She can't. She can't help it. I know it's annoying, but she can't control it." Thank goodness another mom was at the bus stop. She looked at him and said, "Some people's brains just work a little differently", which he seemed to understand. Even after saying that, though, I talked with L. Again.

The mom and I just met this year, at the bus stop, but she seems to "get it", as we talk a lot in the short amount of time that we wait for the bus. And I appreciate her for it. When it's your kid that's put on the spot, your brain kinda shuts down and your emotions take over. In my case, that means I can't express things the way I should be able to. I can't explain to the kids that L just isn't capable of controlling her volume or her vocals or her rocking. She helps me talk my way through it once the kids are safely on the bus. But that doesn't mean I stop thinking about it.

As I was driving to work, I was trying to think of ways to "fix" this. I could do headphones with an ipod, but she'd sing right over it. And probably lose it. I could make her stop riding the bus, but that's not convenient or fair. I could ask if she can ride the special needs bus, but that would put my kids at 2 different bus stops on different schedules. I could hold a neighborhood meeting explaining L to the other kids. I could ...

Who knows what I could do?

Oh, I got it! I will teach all of them the words to 5 Little Monkeys!!!!

Who's watching?

Last night, I got something completely unexpected.  Just as I was about to close down my computer and go to bed, I received a message on facebook from a friend from highschool.  It's one of those messages that completely catches you off guard, leaves you stumped, makes you reevaluate everything you've ever done.

And leaves you with a permi-smile.

What I received last night was a compliment to the Nth degree.  I was informed that she was thinking of my family and me, followed by an incredible compliment that I would have never expected.  I feel as though I do what I can for my family and nothing I do is special.  I never think twice about the impact of my actions or words when those are a part of my every day routine.  (I do, however, fret infinitely if I do something out of character that could have possibly hurt someone.)  And believe me, when I do something that upsets someone else, it's instantly pointed out to me.

You see, everything we do in life is noticed by someone.  We may not even realize it.  Whether what we are doing is something positive (volunteering your time, being nice to total strangers) or something negative (ignoring people as we sit with our noses in our phones, yelling at someone in customer service), there is at least one person who is taking note.

The problem is, as was pointed out last night, we don't always realize that people are watching.  We don't always realize that what we do matters.  Our lives are inundated with negatives - others pointing out what we're doing wrong, complaining about how someone hurt their feelings or don't know what they're doing, etc.  She pointed out to me that, "nowadays, people are quick to point out others flaws and forget to appreciate."  The words that preceded this thought are words that will stick with me. Probably forever. 

What I was taught last night by the words my friend feared would "sound weird" was that it feels awesome to be complimented.  

The mere fact that her fear was about sounding weird for issuing words of affirmation of something I do, or offering a positive view of how my actions are received is disheartening.  Shouldn't this be the norm?  The standard by which we should all strive to live?  So, while she was telling me positive things, making me tear up a little and smile a lot, she was also teaching me  lesson.

It is important how you treat people and how you live your life.  It is REALLY important what you choose to point out to others.  What you say CAN make or break someone. 

So my challenge to you is to go out and let someone know how they inspire you.  Tell someone something positive.  Ignore the negative!  Catch a glimpse of that silver lining and shout it to the world.  

Go out and SAY The GOOD!

Just making it worse

The last few days have been ... trying to say the least.  And I'm exhausted, emotionally and physically.

Ten days ago, we took L to the doctor to try and get her prescription changed. She was on Prozac to help with her anxiety, but it was making her aggressive when she was in melt-down mode, which was pretty often. It got to the point where she would slap at my face, grab Oma's nose hard, hit or bite herself, etc.

I think I'd take that over what we've experienced for the last few days.

We weaned her off of the Prozac over a week's period.  Then, we started a new pill that was supposed to help calm her down, help her control her impulses, etc. Everything has been completely opposite.

The new medicine makes her hyper. Bouncing off the walls. Unable to sleep. OR whiny, inconsolable, perseverating on things that aren't an issue.  Nothing in between.  And it's been a nightmare.

I can fully understand why couples with a special needs child have such a high rate of divorce. This has been an extremely stressful last few days.  I'm too tough, he's too lenient. I cover my ears and walk out of the room, he sits with her trying to get her to talk it out.  He says I don't handle it well, I get mad at him. Seems about right, doesn't it?

We came home from church today and listened to L whine at the people who were "laughing at her" (no one was), or crying about her hair band disappearing (she yanked it out), or not wanting to go to the doctor (which she started joking about just a few minutes earlier) the whole ride home. I told the "people" to quit laughing at L!  She got upset with me b/c I scared her. I put her hair up in a new hair band, she pulled it back out. We confirmed over and over again that there was no doctor, she didn't hear us.

I sat in the back seat crying from complete helplessness.

Shannon couldn't get out of the car fast enough when we got home. He ran to L's side of the car and got her out as quickly as he could and just sat on the porch with her trying to help bring her back.

After she went inside and started banging on the drums, I sat on the porch with Shan trying to figure out where to go from here. I feel like every decision we make is the wrong one. I'm tired of trying new drug after new drug to only get worse and worse results.

As her parents, we're supposed to be able to help her, to do what's right for her, and I feel like we're just making it worse. I can't seem to make anything better for her and there is not enough preparation in the world to keep her from having a meltdown.

For now, we sit on our respective couches, noses in our computers, trying to get as "far away" from it as we can. We need to reorganize our thoughts, get a new game plan, and call the doctor in the morning.

Tonight, however, I'm just hoping she goes to sleep.

Before midnight.

That'd be nice.

This is NOT what I signed up for...

Shannon highjacked the blog... AGAIN!

I did not sign up to be the father to a Special Needs child, especially one with some disorder I had never heard of before.
I did not sign up to be the father to two girls.
Somewhere along the way, God must have gotten it wrong.

The way it was supposed to work was that my firstborn would be a boy. My son would be the sports star that I so desperately wanted to be growing up. He would never be the quarterback though, he was too talented to JUST be the quarterback. He was more of a power receiver on offense and a devastating linebacker on defense. Undoubtedly the 2nd Baseman on the diamond and the best 6th man small forward that anyone had seen in a long time. That is the son I signed up for.
 Between two and five years after my son was born, my daughter would be born. Like her brother, she would be very talented in her own right. She would have a love of sports, especially softball... and she would be an equally good 2nd Baseman. More so, she would be beautiful. Not that stuck up, popular girl clique kind of beautiful... rather the type that is just genuinely, girl-next-door, sweet as pie beautiful. She would have a mighty protector of a brother, but would rarely need him. She could fight her own battles when needed.

THAT is the fatherhood that I signed up for. What I got was not even close.

What I got was something so frustrating that I often wonder if I am doing anything right by them. What I got was exhaustion beyond my wildest imagination. What I got...

was so much more than I could have ever imagined. 

I have the two most amazing daughters, perhaps ever.
 Lauren has Fragile X Syndrome and this causes a severe amount of frustration for Rachelle and me... but nothing compared to what it does to Lauren, yet she handles it with such decorum.
 Kristen does not get the fairest lot in life because she, so often, has to fulfill the role of 'big sister' to Lauren.
 Despite the, not so fair, hand they were dealt the love that they show to one another, to us, to everyone around them was unfathomable to me for so many years. Never did I know that two young girls could have such an impact on their community as Lauren and Kristen have had in their short lives. Ask anyone, and they will likely tell you that they "don't know what it is, but (they) just LOVE those girls..."
 They have forgiveness in their hearts, love in their souls, and grace in every fiber of their being.

Sure, I might be a little biased. Perhaps I wear my blinders a little too tight... but no matter. I would be ignorant to say that they are PERFECT, but they are darn sure close (most of the time). There are times that they are vile little turds whose apparent mission is to bring hurricane-like destruction to anything and everything in their path. I attribute that side of their personality to revenge for my childhood. They say your children are twice as bad as you were growing up... I'd say my kids are equal in the turd department. But I could not hold a candle to their wonderful side.

As I sit here on this Father's Day, alone in the living room while everyone else lays down for a nap, all I want is to lay down as well, but not before I finish this... I am in a peaceful bliss knowing that my God knew exactly what he was doing when he blessed me with two daughters. Two very special souls who invent new ways to fill my heart with love every day.

I am blessed beyond measure, even if it not what I signed up for.

Becoming Mrs. Rogers

In every position you are in in life, there is someone you must lean on, someone you must run to for advice, someone you need. I've found myself in that position many times over the last 6 years since L's diagnosis with Fragile X Syndrome.

In that regard, I've been blessed with many friends who have become more like family to me. I know that, no matter what the situation is, I can turn to them for advice, use their knowledge, or just vent to them.

One in particular is Mrs. Cindi Rogers. She has been there for me in many of my darkest times, including the time my heater went out and my husband was deployed. She called me all the way from Colorado, handed the phone to Chris, and helped the girls and me stay warm during a south Texas cold front. More importantly, though, Cindi has helped me through many of our Fragile X issues, the latest of which was our potty-training saga. I received some of the best tips from her and am proud to say that, after 6 1/2 years, my daughter finally had success on the toilet.

Having been there and done that, fighting her own battles with overcoming FX issues, and continuing to learn through the years, Cindi has done what I have only dreamed of doing. She has put it all down on paper!

We are so excited to announce that Cindi Rogers first book, Becoming Mrs. Rogers is now available on Amazon.com at the link below. This book was a labor of love for Cindi, as well as her husband, Chris. The process has been a wonderful learning experience and going forward will continue to require more learning.

This book is a memoir of sorts about her life (and Chris') in dealing with the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers a lot of different issues like school, behavior, therapies and day-to-day life. It will take you through some downs and eventually some ups, only to come out with moments of joy and hope. "It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too", says Cindi. 

Becoming Mrs. Rogers is the true and heart-felt story of one couple’s journey into acceptance following a devastating genetic diagnosis for both of their sons. Their story, its highs and lows entwined with its wisdom and compassion, has been a beacon of hope for thousands of families struggling with fragile X and other autism spectrum disorders.

Fragile X is a common and inherited cause of learning difficulties, affecting a child's entire world, including social and behavioral problems as well as cognition and speech. Rogers not only tells her story, but also gives advice for new parents, sharing facts about…

* the physical and behavioral characteristics of Fragile X
* the effects of Fragile X on learning, functioning and daily activities
* medication and therapy
* how fragile X affects the family.

Cindi Rogers and her husband, Chris, share their perspectives and tools they embraced in order to help their boys be as happy and independent as they can possibly be. It is a story of challenges, tears, joy and hope.

We also hope that you might consider reading it, and/or sharing it (forward this blog if you'd like) with others in your life that might benefit from such a story.

**A portion of the proceeds of this book are donated to the Rogers Neighborhood FX Family Fund which in turn offers scholarships to the NFXF International bi-yearly FX Conferences.**

------------------------------------------
Cindi Rogers is the mother of two sons, ages 23 and 25, who are affected with fragile X syndrome and autism. Since receiving this diagnosis, Cindi has become a leader and symbol of hope within the fragile X community. Her positive attitude, creativity and defining can-do attitude has inspired families and professionals worldwide. Cindi and her family have traveled to conferences around the world to present her innovative strategies, helping families not only to live with fragile X, but to also thrive. It has become her personal mission to share techniques to help families generate ideas that they can implement in their own world, while helping their children with fragile X syndrome to live happier, more independent lives. Today, Cindi serves on the board of directors for Developmental FX in Denver, a non-profit that helps families just like hers learn to thrive in the face of fragile X syndrome. She lives and works with her husband and two sons in Littleton, Colorado, and together they love travelling the U.S. in their RV named Rocket.

Connect with Cindi:
Facebook- https://m.facebook.com/profile.php?id=1302335567
Twitter- @MrsRogers2014
Rogers Neighborhood FX Family Fund--http://www.rogersneighborhoodfxfamilyfund.com
Blog- http://welcometothefragilexneighborhood.blogspot.com/

Too much?

Sometimes, I wonder if I put too much on the shoulders of my little one. K is 5 years old.  She is rambunctious. She is energetic. She is smart.

On many days, she is my saving grace.

L is 7, two years older than K.  Yet, I find myself asking K for help with L, probably more often than I should.  Tonight was a perfect example.

We went to eat dinner at Texas Roadhouse.  They were not on a wait, so we were seated immediately.  L, however, is used to waiting when we go there, so she sat on the little wooden bench, determined to wait until it was our turn.  No prodding would make her budge.  K and Shannon walked to the table while I went to sit with L and wait.  Once she had determined an appropriate amount of time had passed, we got up and were kindly escorted by another hostess to our table.

Once we sat down, L grabbed her kid's menu, which was folded in an unnecessarily-difficult-to-open-even-as-an-adult fashion, and managed to rip it. Into many, many pieces. As I could see the impending doom setting into her eyes, the first sign of a meltdown, I quickly asked K if L could have her (un-ripped) kid's menu.

She politely obliged.

L was mostly satisfied with the "new" menu while K began opening up some peanuts and handing them to her sister to help bring her all the way back to us.

Why is it that I feel it's okay to ask my 5 year old to give up something of her own to prevent my 7 year old from meltdown central?  I know that K can handle it, and she does a fantastic job of "understanding" the situation, but is it fair to her?

I know that we've talked with K about Fragile X and what it means for her sister, what it means for our family, and what it means for her.  But, at times, I feel I'm asking her to bear too much of a burden for such a young child.

And then I feel guilty.

It's not that I allow L to get away with anything.  I don't give in to her every whim.  I don't make K give up everything all the time.  I really don't.  I try to be a fair parent.  But when those moments happen, and we are in public, and I can just sense that things are not going well, my first knee-jerk reaction is to make a request of my younger daughter that will appease the older.  And I feel I am stealing a piece of her every time I do it.

It should be noted that I acknowledge her big heart. I thank her for her assistance. I try to replace the object denied or the time given up as quickly as possible.  But do these things really make up for asking so much of my baby girl?  Does me asking this of her make her feel less important? Less deserving?

Less loved?

It is in these moments that I see two beautiful girls, both affected by Fragile X, but in completely different ways.  And it is in these moments that I want to take Fragile X, ring its neck, rip it to shreds, and throw it into a black hole.

And it is in these moments that I realize that I am so lucky to have both of my beautiful daughters who teach me every day what true love is.


Updated to add a response one of Shannon's dear childhood friends posted.  It gives me a sense of comfort.  Thank you, Tara.

Transitions

Every day, I wonder, "what is up with her!?"  I have found that I have to walk L through every single step of her day.  "Put your panties on. Put your pants on. Put your socks on. Left foot. Right foot. Put your shirt on." I used to be able to say, "get dressed".  What happened!?

What happened?  Really? I have to ask that question, knowing everything that has happened in the past several months?  Come on, mom. Use your noggin.

Our lives have been in the state of constant transitions here lately.  My mom moved in with us back in May.  Around that same time, my husband got orders for deployment to the desert, effective date of October.  There were to be many changes to go through.  And then some ....

My sister needed some assistance with her office until she could get a vacant position filled. My mom went up there to help, and just a few weeks before she was scheduled to be back home with us, they were involved in a terrible accident.  So, while Daddy was going back and forth to training, we were preparing to have Oma home, only to be delayed in that expected outcome.

If you know anything about children, especially children with Fragile X, you know how much preparation goes in to anything. You have to mark calendars, put up schedules, talk with them, do countdowns.  All of these preparations came to a halt and were reversed, which makes for a not-easy discussion with your FX'er.  She didn't understand.  But the calendar said Oma would be home today! Why is Oma not home?

We had to take an unplanned trip to Abilene to see my sister and my mom.  We come home, and Daddy leaves for 2 weeks of training.  Daddy comes home for a few weeks, then he leaves for his deployment.  Oma comes home in a wheelchair then leaves for follow-up appointments then comes home, etc.

Meanwhile, during all of this back and forth commotion, L changed day cares, started back to school, started swimming lessons, had to change swimming coaches, and is about to begin taking drum lessons.

How could I possibly wonder why L is having such a difficult time?  Her life is nothing BUT transitions!!! She has, in reality, handled them all very well, all things considered.  Her meltdowns are more frequent and more intense.  She has gotten physically aggressive with me at times.  But, things could be so much worse.

I am proud of my girls.  While their lives are ever changing, they have stuck together and remained positive.  They support each other and encourage each other.  I just wish I could make it all easier for them. And I wish I could make their lives more stable, with less transitions.

In the meantime, however, we will continue to build schedules and verbally cue L to put on her socks. Left sock. Right sock. Good job.

And So It Begins . . .

Picture it:  L. October, 2012.  Birthday party of a friend. Lots of people. Lots of noise.  People she knows. People she doesn't.  10 mg of STX-209 in her system twice a day.  Here she is swinging at the piñata anticipating the goodies that will come pouring out once it's broken.  (Look at her stance. You just KNOW she's gonna knock the schnockers out of it!)

 

Picture it:  L. June, 2013.  School party with her classmates.  Lots of people. Lots of noise.  People she knows.  0 mg of STX-209 in her system.  Notice the lack of picture below of her swinging at the piñata?  That's because she didn't. Not today.

All she talked about all week was the "pick-a-nic" at the park on Friday!  She was so excited. 

I was already sitting in the pick-up line at the school when L's class was walking back from the park, ready to end their last day of school.  I knew things didn't go well when I saw her walking, holding her teacher's hand with headphones on her ears.  <sigh>  I wonder what triggered her . . .

She goes through the school, gets her backpack, and I wait.  Her aide came to my car and said L was in the nurse's office because she melted down after a mosquito bit her.  They could not calm her down while at the park until they promised her she could go to the nurse when they got back to school.  So, I waited.

L finally comes out of the school, still holding teacher's hand, still wearing the headphones.  I was informed that the park trip was not successful, but she made it through.  I asked L how today was and she said, "fine".  I asked if she hit the piñata and she said, "all the kids wanted to". 

I said, "I know. Did you get to?" 
L: "no". 
Me: "why not? Too many kids? Did it break before it was your turn?" 
L: "NO!  I COULDN'T DO IT!!!!!" 

My heart dropped.  My baby girl was so upset that she couldn't do it.  I could picture it in my head:  it's her turn.  She steps up to take the stick and her body freezes.  Everyone's encouraging her.  She throws herself on the ground and says, "I can't!"  Then, she starts grunting, hitting herself, possibly biting herself because she really WANTS to do it, but she can not make her body do what her will wants.  I see her teacher picking her up off the ground, walking away from everybody, and wiping her tears.  I can picture L's breathing getting slower as her body starts to relax again and the anxiety attack fades.  I see her finally walking back to the piñata and slowly pick up a few pieces of candy from the ground, because that's all that's left by the time she's able to move again.

I had to fight back tears on the drive home.  It made me remember last night when she was getting ready for bed. She took the rubber-band out of her hair and it fell. She couldn't find it and became upset.  I was in the kitchen not watching too much what was going on, but her daddy was trying to console her, let her know it would be okay.  I walk by them to head to another room when I saw it.  L hit her daddy in the face.  It was a hit of frustration, agitation.  I know she didn't know what she was doing or why she was doing it, but seeing her hit him shook me.  I have not seen that kind of action from my baby girl before. 

I know there are some who feel fighting the drug companies is not the way to go.  I know that the trial drug did not "succeed" in the written goal.  I also know that my child was changed.  It wasn't a placebo affect.  The medicine was genuine and true and gave me the daughter I know L is. 

Now that the medicine is out of her system, MY L is gone.  It's only been 2 weeks since she titrated down.  It's only been 30 hours since she took her last pill.  I've already seen more meltdowns, more fits, more "I can'ts", more hitting, and more biting attempts than I saw in the last year combined. 

I am sad beyond belief, for her, for her sister, for their daddy.  I know it will all be well in the end, but now it's MY turn to grieve.  I haven't truly done so yet because I always knew there would be a way to make things better.  For the time being, however, the struggles will return.  We will once again have to plan for every possible scenario to help prevent meltdowns.  We will once again sit as close to the exits as we can so we can make our quick getaways.  We will once again have to rearrange our lives to make L as comfortable and "safe" as we can. 

And I'm going to have to be okay with that . . . .for now.

Processing ....

Complacency.  It happens to the best of us. We get so comfortable in a situation that we stop trying, stop looking for better ways, stop worrying.  Until ...

Funding.  It's the hot topic of conversation in government lately.  What can be cut?  Where can spending be limited.  How can we afford the luxuries we've all become accustomed to?  Money is always at the back of people's minds.  Money is the root of all evil.

We have become complacent in our search for helping L.  We've become comfortable in believing the money would always be there.  Her doctors would always be there to hand out her medicine and the FDA would come along and approve the new meds she's been on for the last year.  The same medications that have helped her and so many affected by Fragile X Syndrome. 

Never in a million years did we think the rug would be pulled out from under us with five little words, "we don't have the money". 

I have been sitting on the verge of tears, a few of which have escaped my eyes, thinking of the impact this will have on our lives, on so many people's lives.  I'm sad.  I'm scared.  I'm feeling the need to scream and cry and write to people to fix this. 

A year ago, L began a journey in the field of medicine that would improve her life more than I could have hoped.  She became a little girl that wanted to take on the world.  Her verbal skills sky-rocketed.  She started making friends and talking and playing with her classmates.  She started asking questions about things around her, questions that made sense.  A question no longer went unanswered or met with quizzical, empty eyes.  Stories began emerging of successes and attempts at things never imaginable. 

I heard people - family, friends, acquaintances, teachers, aides - raving about the improvements seen in a short amount of time.  I watched as L and her sister became friends who played together, who taught each other things, who helped each other and shared with each other, and read to each other.  Two sisters.  Best friends.

All of this may change, and change dramatically, all because of money.  The production of the medicine that L's been taking is coming to an abrupt halt.  The company doing the trial is discontinuing the project due to funding.  They don't have the resources available anymore. 

In my head, I picture young men going from playful classmates and sons to aggressive children in stuck in men's bodies, hitting and biting the people who are trying to help them the most.  I picture once calm and entertaining classrooms being overwhelmed with meltdowns, yelling, crying and jumping up and down.  I envision parents trying in vain to get their children to sleep, to eat, to get dressed on their own.  When the children are told "I love you", in response I hear . . . silence.

I fear for these families.  I am nervous for my baby girls, one of whom will be thrown back into the world of sensory overload and lack of understanding, one of whom, I'm afraid, will lose the sister she's come to know over the last year.

I'd like to think none of this will happen, that these advances the individuals have made will not regress.  I'd love to envision the funding miraculously materialize and this is all just a big "haha. Oops, sorry for scarin' ya".  But, I won't hold my breath.

I've been complacent too long, and all I've accomplished in this is to get blind-sided.  It's time to act.  While STX209 may not be saved (but we can all hope), raising awareness will get us somewhere and will get us heard.

Get your pens out and start writing.  Ready?

Go!

Here's to 2012

To say that 2012 was a hard year would be an understatement.  To say I'd like to forget it would be wrong.  If I did that, I would have lost all of the lessons learned and would not have grown.  And believe me, there were MANY lessons learned.

The year brought more pain than I could have possibly imagined.  I was betrayed in the worst way by someone I considered a friend.  I was betrayed in the worst way by my best friend.  The sword went in me, deep, and was twisted over and over and over again, up and down and left and right.  It sliced me in ways unfathomable.  It pierced my heart.  It spliced my soul.  It demolished my trust in people.  I am still in the healing process and I'm still wounded. 

However, these hurts taught me lessons.

Lesson one - friends, TRUE friends, are there for you in your deepest, darkest hours.  They will hold your hand and support you, even when they don't support your decisions.  They will hug you and let you cry.  They will hold the phone to their ears while you sit in silence on the other end, not saying a word, just to let you know they're there.  They will wrap their arms around you in church when you break down in uncontrollable sobs.  And they will not judge you during this entire meltdown.  They will help you build yourself back up, ready to face the world with you.  They will love you.

Lesson two - your spouse should be the relationship you nurture the most, not take advantage of.  You never know what others are capable of, but if you have a solid foundation, you can overcome it.  He must be honored, respected, and cherished, always.  He must be shown these things, regularly.  Never take it for granted that he knows.  Show him. Every. Day.  Continue to pursue.  Continue to flirt.  Continue to build upon your relationship.  This is the relationship you must keep strong, because one day (Lord willing), your children will move out, but your spouse will remain.  Make sure you want each other there when you're all alone.

Lesson three - "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways, submit to Him and He will make your paths straight" Proverbs 3:5-6.  I made many decisions this year that I had a hard time making.  The last thing I wanted to do was make this decision or that one.  I am grateful for my upbringing and my faith because before I said yes or no, stay or go, I closed my eyes, and cried out.  I prayed fervently, more than I ever had before. I tried to tell Him "no", and He laughed and said, "Yes".  So, I did as I was told and am forever blessed in doing so.  My year could have turned out so differently, and not for the better, if I had not listened with my heart and done what I heard.  I am eternally thankful.

However, the year was so much more than pain and suffering.  L has made progress in leaps and bounds thanks to her acceptance into the STX-209 study.  She is able to make sense of words and sentences, communicate somewhat effectively the majority of the time, and can enter unfamiliar places without too much prodding.  Her kinder teacher has nothing but praise for her, and she is starting to play with her classmates.  I can honestly smile just thinking about everything she has accomplished this last year.

K, too, has made much progress.  She decided that panties feel better than pull-ups, so she is finally potty-trained!!  It took a while for her to realize that L had a reason for not using the potty; once she finally understood, there was no looking back!  She makes a great "big" sister and is helping teach L.   K is also impressing her daycare teacher - she was the first in her class to be able to spell her name, count to 30, and recognize every letter and number.  It probably helps that she assists me in helping L with her homework.  It's definitely fun seeing her learn so much so quickly.  

Overall, I'd say 2012 was a growing year.  Every one of us has been taught lessons that will stick with us for the rest of our lives.  There are many things I'd never wish to relive and never wish on my worst enemy, but those are the things that taught me the most and forced me to grow.  

Thank you to my friends and family for helping me, guiding me, and letting me cry on your shoulders.  I could not have survived this without you.

Here's hoping 2013 is a less stressful year where healing continues, growth is less painful, and love expands exponentially.   

Sandy Hook Tragedy & My Views - A Social Commentary

**The Husband's Turn to Hijack the Blog Again**

Let me say this up front. Nearly every piece of information in this blog is MY OPINION. I do my best to base my opinion on facts whenever I can, which can make me seem very wishy-washy. My opinions seem to change about almost everything... I mean, I guess that is normal, right? I do not claim to be an expert... pretty much ever. I am not smart enough to be an expert, and I think to be an expert you need to know EVERYTHING about the subject. I think it is funny when I see someone on TV that has '_____ Expert' in their title. More often than not, they have a TEAM of people that know a whole awful lot about something... but THEY them self are not an expert.

To cover a wide range of things and to help me keep myself on track, I will divide this up in to sections. I am going to write this blog very raw, so it might be a little disturbing. As a parent, I can not write these thoughts without emotion. My soul was shaken to its core yesterday. All day long, whenever any of us would talk about it, L was in my mind. I fought back tears for most of the day every time someone would bring it up. I am fighting back tears just typing those last couple of sentences.
I am fascinated by serial killers and murderers. I have multiple books about them.  For years, Rachelle has been a little disturbed and worried about this.  I enjoy reading about them, what they were like, how they were raised. I try to find and understand their tipping point. As best I can remember, very few of them had a bad childhood or were abused. Often times there is something that to most rational people is just a very trivial event that sets them off. This applies to rampagers and serial killers alike. The difference being that the serial killer often has a justifiable mental condition for them to continue to take lives. Rampagers are often just pissed off about an event ("temporary insanity") and when they snap out of it and realize what they have done, kill themselves so as to not live with the guilt and have to face the public outrage. Obviously there are exceptions, but based on what I know and have read, this is the typical profile.

Who in the hell kills little kids?
I think that is the absolute most disturbing thing to me. Not that he killed his mom, or that he went in to a school and shot and killed others. The most shocking and disturbing thing to me is that he was able to walk in to an elementary school, in to a Kindergarten classroom, look at a room full of 5/6 year olds and pull the trigger, multiple times. Very disturbing.

The "Facts" and My Theories
 As is the nature of "news reporting" in this day, I have heard multiple reports that turned out to be false. I had heard that he killed his mother IN the classroom and then turned the gun on her students.  That made sense to me.... that is how these kind of things go. There might be a few collaterals on the way to the target, you get your original target, the adrenaline is really rushing now, and you start indiscriminately firing on anyone in your path. HOWEVER, the latest that I read said that he killed his mom AT THE HOUSE, and then drove to the school, and you know the rest. To me, that does not suggest blind rage. I heard a medical professional (I believe it was a psychiatrist) that was commenting on this. She said that by doing this he was killing another part of his mom. That makes me wonder if he thought of those kids as more important to his mom than he was. It has been said that they had a fight the evening before, or the morning of (again, the 'news reports' are all over the place when it come to the facts). Was this a central theme of the argument? Did his mom actually say something to support my assumption? We will probably never know.

I have heard some say that he possibly had Aspergers or was in some way on the Autism Spectrum. He has been described as 'painfully shy', 'socially awkward', and 'a very good student'. This could support the ASD claim, but nothing has been confirmed.
 At the risk of sounding like a jerk, I am on the fence if I want it to be an ASD diagnosis or not. On one hand, of course I do not want any negative attention on the autism community. They (as in the advocates) struggle enough as it is to be accepted into mainstream society and I would not want anything to set that back. On the other hand, if it comes out that he did have Aspergers or Autism, maybe this tragedy will lead to more research, more funding, better treatments, etc. etc.

Universal Health Care
 I have never been a proponent of ObamaCare. I have been to countries that have a free healthcare system and it has many flaws. Hell, the military medical system IS Universal Health Care, and if you follow Rachelle's many Facebook posts about the subject, you KNOW that the military healthcare system is a pain in the ass. After reading some very thought provoking posts and commentaries in the last day, I have come to the opinion that we DO need some aspects of Universal Healthcare in place. Most importantly, access to and care of those with mental health issues. I believe it is crucial that we focus on changing the stigma associated with mental health disorders. Far too often, those with mental health issues are looked down upon, medicated, and/or thrown into either an institution, or back in to society without the proper supports needed to help them get better. We must do a better job. We are the most advanced society ever, and every day we become more advanced.

Gun Control
Probably the most contentious and widespread argument to be debated is, and will continue to be, gun control. That if the killer did not have such easy access to guns this tragedy, and many more like it, would easily be prevented. That when they wrote the 2nd Amendment, they were not thinking about technology and modern weaponry. I find it hard to argue the constitutional argument. I tend to agree with those people in a basic sense. I do not agree with those who say that taking guns off the street will solve the problem and the facts support my opinion. There are many things that are illegal... and every one of those things are still a very prominent part of our society. Drugs are illegal, yet we still have a drug problem.
 Looking at the Washington D.C. and Chicago gun control laws that have been ruled unconstitutional, the murder and violent crime rates DECREASED in number, by as much as 14%, in those cities after the laws were ended versus when they were in place. Nationwide, in states that have Right-to-Carry laws, the violent crime rate is 24% lower than the rest of the U.S., the murder rate is 28% lower, and the robbery rate is 50% lower. The only conclusion I can make of this is that when lawful citizens are properly armed, unlawful persons are less likely to commit violence.  

Society, in General
Easy access to violent video games, tv shows, movies is another huge argument. I do believe that our society is disenfranchised with face-to-face social interactions. I am an example of this. I would much rather communicate through email than I would through personal contact. I can formulate my questions and responses more thoughtfully and articulately. I can type something, think about it, and reword it so that it makes my point stronger, or sometimes even changes my opinion once I see it written out. I've wondered if the video games and such alter our sense of reality, of good and evil, so much that we lose touch. But I do not think that is it. I think it has more to do with the WAY we are raising our children. We have lost touch with what it means to be a parent. We are consumed by such a fast paced lifestyle and the pursuit of something better that we do not take the time to teach our children these fundamental life lessons and skills. My dad never taught me to shoot a gun, but he did make sure that I knew that guns do, in fact, kill things... make them dead, forever. I cried the first time I killed a living creature. A pigeon. Since that day, I have shot and killed many a squirrel, rabbit, and raccoon. But I have never forgotten what it is like to take the life of a living creature.

I went to Basic Training with a number of people who were experiencing their first time holding and shooting a gun. Perhaps, even to this day, the only thing that they have ever shot was a piece of paper with a target on it. It was not until I started writing this blog that I had that thought. Thinking about it more, that saddens me. I am not saying that everyone should go out and kill something so that they know what it is like... but it damn well would not be the worst thing in the world (done legally of course). Step up as parents, take your kids out of the house and teach them some valuable life lessons that the generations before us learned growing up. Heck, just playing outside is a start in this day and age.
I don't think it is because of the violent video games, though that might admittedly be biased because I enjoy playing those shooting games that are often blamed. If I die in the video game, I come back to life and continue playing. I have a hard time thinking that anyone can get this confused with reality. Does anyone really believe that when you shoot someone that they just come back to life across the neighborhood? It might desensitize us to the violence, but surely everyone can understand that 1) It is a video game and 2) that death is forever. Perhaps that is just the optimist in me, but I really hope not.
The immortality displayed in movies, to me, is a more likely companion to the real life violence. Rachelle pointed it out to me as we discussed the contents of this blog post so far. When you watch a movie and a character is shot multiple times and does not immediately die, or even lives long enough to tell the hero who the bad guy is... maybe that does more damage to our psyche. Perhaps that leads people to believe that one bullet does not really kill. But then I think back to my childhood and the shows and cartoon that I watched. I can not even count the number of times that I saw Wiley Coyote blow himself up, or Tom maul himself with a hammer, Jerry narrowly escaping each and every time. We were subjected to a LOT of violence, but it was a different time and often it was animated.

I believe a lot of the problem in the United States can be attributed to the declining importance of basic manners. Maybe not the extreme violence, but just the general lack of care and concern for our fellow man. Do we live such a fast paced life that we can not take the time to say please and thank you? We can not allow common decency become extinct. This 'me first' attitude HAS to stop. I am as guilty as the next guy at times, so this is definitely not a holier than thou issue.

Having said all of this, I believe perhaps more than any reason, that it boils down to media sensationalism. In the rush to break the story, facts are misreported and, as we have undoubtedly seen over the last 24 hours, we just flat out get the wrong information. Again, because we live in the information age and everyone has access to the newest story, we are inundated with bad news as soon as it happens. Fifty years ago, the majority of us would not know anything about Sandy Hook until we read the evening paper... after a lot more of the facts were known and the rumors were laid to rest.We would be reading a fairly comprehensive article of facts and not assumptions or 'breaking news'. I think this kind of immediate news leads us to believe it is more commonplace than it really is, which then causes the uprising of the 'we need more security/gun control/tougher laws' groups. I do not want to dismiss the need for some reforms, but violent crimes are actually on the decline. We just hear about them more often because of the flow if information.
Along with the availability of the internet and the free flow of information comes the 1st Amendment (and the Universal Declaration of Human Rights adopted by the United Nations) and the rights of Free Speech/Religion/Expression. This is perhaps the greatest freedom that we enjoy, but it also comes with what I perceive as downfalls. We are free to spout off inaccurate and vile information to anyone without regard to the consequences, with very limited exception. The anonymity of the internet allows us to say things we normally would not say and to do things we would never dream of doing otherwise. This causes those who are not as strong in their core values to take what they read and hear as a challenge to do something even bigger and more heinous knowing that they will forever be immortalized. Their accountability is non-existent, but their story will live forever.
 Freedom of Speech is a tricky issue. If I advocate for changes to the First Amendment, I have no leg to stand on to those who argue that if we can change one amendment, why not the other. What we need to do is take a good hard look at ourselves as a society and change it from the inside out. 

Fundamentally, we need to be better people. That is the core issue. Take responsibility for your actions, take responsibility for the actions of your children. Teach others respect, tolerance... most of all teach LOVE.

Conundrum

With the recent election being "such a critical moment in history" (which one ISN'T described that way?), a lot of debates have occurred between friends, families, colleagues, etc.  People will tell you who to vote for and their version of why.  People will yell at you, call you names, insult your intelligence if you don't vote for who they think is best.

I have run in to my own dilemma, as most people probably have.  I know who I WANT to win.  I also know this person has no chance in hell of winning.  So, I have had arguments with myself, with my husband and with some friends about this.

With the way the democratic system is set up in our country, and the way the media bias presents it, there are only 2 potential parties that have any shot of actually becoming the president.  You are inundated with information about these 2 people, their good, their bad, their ugly.  If you turn on the television, radio, computer, e-reader, phone, you are slammed with irrelevant information about one or both of these candidates -- what they ate for dinner, where they went on vacation and with whom, what color of undies they're wearing and if they're tighty-whities or boxers or the awesome combination of the two known as boxer briefs.  (Hey, wait a minute! If we can MIX types of underwear, WHY can we not mix types of politicians!?  Seems a little hypocritical to me!)

Neither party actually represents fully what it seems the majority of Americans want and need.  Talking to people I know both intimately and superficially, it seems few, if any of them, are completely convinced either party should exist.  Almost everyone I've spoken with has said they want something in the middle.  A Libertarian, of sorts, though not necessarily labeling themselves as such.

Unfortunately, until I got to the ballot, I had no idea who was representing the parties of the Libertarian, or Green, or Constitution, or Justice, or Objectivist or, or, or ...  Why?  Because we are not presented with full information.  We are not given a true opportunity to speak our voices.  We are told "there are 6 numbers in the lottery, and you must pick all 6".  If you only pick 3 numbers, you are not truly participating.  You are wasting your time, your money, and your picks.  What would be the true purpose of going to get your ticket if you don't really want to win?

The conundrum is this:  if we all continue to follow the rest of the sheep and go to the polls with the mindset of 1 of 2 parties (or 6 of 6 lottery numbers), nothing will ever change.  Until we all step up and make our voices heard, the voices that say "we want choices! We want real representation! We want someone who is not just a face with words, but action!  We want something different!", the system will continue on the path it's on.  Americans will continue to be given 2 choices of people to run this country.  The party lines will continue to spread outward, and the country will continue to unravel.

I know I teach my children to stand up for themselves.  I'm a believer of having convictions and standing behind them.  I am a believer of making  a choice, sticking to it, and being proud of that, regardless of if your opinion is frowned upon by others.

I am also, however, not a fan of purposely choosing to lose.  I am not a fan of throwing away a vote to a candidate that, even if they obtain the 5% they're hoping for, will not win.  I am not sure how to get the government to hear our voices if we don't buck the system and fight back against it, but I also can not, in good faith, vote for Mickey Mouse.  I do not honestly think that using your right to vote and voting for the unknown will make the media stand at attention and say, "hey, maybe we SHOULD give equal time to ALL parties".  I just don't think the polls is the place to do this.  If you want to make a difference, it should start NOW for the 2016 election, not start now for the results of today's vote. 

Unfortunately, I acquiesced to the system, in the end.  I can not say I'm proud of this moment, but until our system is fixed, we start early enough, and everyone has an equal opportunity, why pick only 3 numbers when the requirement is 6?  Why throw you vote out the window?  Why does this system suck so bad?

Reset!

If you know me at all, you know I'm not exactly tech-savvy.  Ask me what I know about computers and I'll say I can turn them on.  That's about it.  I'm just that good!

Yesterday was the epitome of my luck with technology.  Keep in mind this all happened IN ONE DAY.  <sigh>

I woke up yesterday morning and was going to put dinner together in the Crockpot.  I get out my Kindle Fire to connect to Pinterest.   I get the message "wi-fi not connected".  So, I go to connect.  I pick the correct signal.  I type in the password.  I hit enter.  It won't let me connect.  I try again. And again. And again.  I finally get frustrated, so I go to "help".  It tells me how to connect (which I've already tried) and if I'm still having problems click here.  I click here and it says ... get this!! It says you can not access this site because you need an internet connection!!!  Gee, thanks.  <sigh>  Shannon later figured out I'd have to reset the system.  Reset!

I get to work, do paychecks, etc.  I go to deposit my check online!  I scan my check.  "Can not process".  I scan it again. And again. And again.  (Are you noticing a pattern yet?)  After my 6th attempt, I quit.  An hour later I decided to try again, so I reboot the computer, scan in my check, and it finally worked (after the 3rd attempt).  Reset!

When I got home, I was in one heck of a mood!  Between the girls not listening to me and just life in general, all I wanted to do was sit down with a bowl of ice-cream.  So, I went to my room and turned on my treadmill.  I hit the Start button. Nothing happened.  This is pretty typical, so I knew what to do.  I hit Stop. Stop. None.  Start.  It started right back up.  Yea!  I'm walking at 3.0, 5% incline and I get to 0.68 miles and BAM! It stopped abruptly!  I would have given myself whiplash if I'd been running, which I was just about to start doing.   I hit Stop. Nothing. Start. Nothing.

I think this is about the time I just started cursing like crazy.

I called Sears to see if my warranty was still good.  Here's the crazy part.  I purchased this on September 28, 2011.  It got delivered on October 3, 2011.  It was October 1, 2012, two days shy of the 1-year delivery date, but three days past the 1-year purchase date.  :)  She couldn't find my information in her system.  (Of course not!)

I keep everything.  This is something I have been picked on about my whole life.  What's that?  You need the instructions for that baby doll that was given to you five years ago?  I got it!  Right here in my filing cabinet along with the warranties and manuals for everything I've ever purchased. EXCEPT THE DAMN TREADMILL!!!!!!!!!!  Really!?!?

LUCKILY, after an hour and a half of searching, I found the receipt that was emailed to me.  I HOPE I am able to get this thing fixed.  I have to call today, because, naturally, the office had closed 5 minutes before my treadmill croaked.  Three phone calls and too many internet searches later, I gave up for the night.

Frustrated, pissed off, irritated, resigned, I get on my computer to just "relax" and vent on Facebook.  I type as my status, "Why does technology hate me!?!?!?"  I hit post.  Nothing happens.  (You can't make this stuff up!)  I hit post, again.  And again.  Nothing.  <sigh>  I refresh my screen and get "Untrusted Connection".

I turned off my computer, stomped to my room like a teenager, and got ready for bed.  I thought, "just one more attempt before bed", so I get my phone, hit my Facebook button, and ... blank screen.  I threw my phone at Shannon.  After a few seconds, a message appears.  Shannon didn't let me see it because he thought I'd have a stroke after the day I'd just had, but I did catch enough of it to know that it indicated Facebook couldn't be accessed on my phone.  Reset.

All of this in and of itself is funny enough.  All in one day.  But, as I sat here typing this, my co-worker came up to me and said, "Can you come find the paper in the copier? It's jammed."  I go to the copier, find the paper, and pull it out, along with a long piece of melted plastic.  Reset is not going to fix this.  Repairman, take me away!

Reset.

Rainy Day Cleaning

Today is one of those rare rainy days that we get in San Antonio.  I don't leave the house when it rains here because my anxiety level flies through the roof.  It's not ME driving in the rain so much that causes my fear; it's other idiots that scare me.  No one in SA knows how to drive when the sky clouds over.  They're certain that, regardless of the temperature, there is black ice on the road, so they must slam on their brakes and drive 20 miles an hour in a 65 zone. 

Don't get me wrong ...  I love the rain!  I love to sit on the porch, wrapped in a blanket, reading a book with a warm cup of coffee sitting beside me while I watch and listen to the rain.

Now, I don't get to DO this when it rains, but I love to.  One, I don't have porch to speak of. Two, I have two little girls who would never allow me to have the peace and quiet required to do these things.

So, instead of getting to do this, I mix my day up with laundry, playing with the girls, reading, and perusing the internet. 

Today, I was looking at Pinterest and my Aunt pinned this blog about cleaning your front-loading washer.  It made the little light in my head go "ding!"  We just replaced all of the towels in our house because we couldn't get the stinky-moldy smell out of the old ones.  So, it naturally made sense for me to follow the instructions presented to me.

There are not many things in life that I regret doing.  You can add two things to that very short list - 1) buying a front-loading washing machine, and 2) cleaning said washer for the first time seven years after purchasing it, having washed hundreds, if not thousands, of poop-covered clothes in that time.

I had no idea of all of the hidden spots that needed to be cleaned!  Pull this back, put a q-tip in here, dry this off, soak that, open this.  There was a whole new (unwelcome) world opened up to me today.  One that I never want to see again! 

It took me about 30 minutes, handfuls of baking soda, all of my remaining vinegar, 2 cups of bleach, 20 q-tips, and a full-sized towel to clean this 18" circle of death.  And it's still not really clean.  It's currently running an empty cycle, the first of many today. 

The towel is now in the trash.  My stomach is almost back where it belongs in my body. And my savings account suddenly has a new target. 

So, to any of you unfortunate souls who made the trendy, colossal mistake of purchasing one of these demon machines, take heed - CLEAN THAT SUCKER REGULARLY!!!!!!!  Do not wait!  Or, better yet, get a new machine!!! :)

Now, go out and enjoy the rain!

The Talk (These words are not my own ...)

Greetings, all.  These are not my words today.  I have stolen them to share with you.

My Daddy just sent this to me in an email. He wanted to share it with me and now I want to share it with you. In the opening letter, the sender says, "We have The Talk with each child at the start of every school year. Our approach changes, but the story doesn’t. The story is always about Adam. Chase knows Adam’s story by heart now, and that is the point. Please don’t forget to have The Talk. Below is how I do it, but like Rumi said, there are a thousand ways to kneel and kiss the ground. One way is to copy and paste this letter, change Chase to your kid’s name, and read it together. That’s what my girlfriends do. Totes fine with us." So, change "Chase" to your child's name, boy or girl, young or old. Remember to teach your child the important things in life.

Dear Chase,

Hey, baby.

Tomorrow is a big day. Third Grade – wow.

Chase – When I was in third grade, there was a little boy in my class named Adam.

Adam looked a little different and he wore funny clothes and sometimes he even smelled a little bit. Adam didn’t smile. He hung his head low and he never looked at anyone at all. Adam never did his homework. I don’t think his parents reminded him like yours do. The other kids teased Adam a lot. Whenever they did, his head hung lower and lower and lower. I never teased him, but I never told the other kids to stop, either.

And I never talked to Adam, not once. I never invited him to sit next to me at lunch, or to play with me at recess. Instead, he sat and played by himself. He must have been very lonely.

I still think about Adam every day. I wonder if Adam remembers me? Probably not. I bet if I’d asked him to play, just once, he’d still remember me.

I think that God puts people in our lives as gifts to us. The children in your class this year, they are some of God’s gifts to you.

So please treat each one like a gift from God. Every single one.

Baby, if you see a child being left out, or hurt, or teased, a part of your heart will hurt a little. Your daddy and I want you to trust that heart- ache. Your whole life, we want you to notice and trust your heart-ache. That heart ache is called compassion, and it is God’s signal to you to do something. It is God saying, Chase! Wake up! One of my babies is hurting! Do something to help! Whenever you feel compassion – be thrilled! It means God is speaking to you, and that is magic. It means He trusts you and needs you.

Sometimes the magic of compassion will make you step into the middle of a bad situation right away.

Compassion might lead you to tell a teaser to stop it and then ask the teased kid to play. You might invite a left-out kid to sit next to you at lunch. You might choose a kid for your team first who usually gets chosen last. These things will be hard to do, but you can do hard things.

Sometimes you will feel compassion but you won’t step in right away. That’s okay, too. You might choose instead to tell your teacher and then tell us. We are on your team – we are on your whole class’s team. Asking for help for someone who is hurting is not tattling, it is doing the right thing. If someone in your class needs help, please tell me, baby. We will make a plan to help together.

When God speaks to you by making your heart hurt for another, by giving you compassion, just do something. Please do not ignore God whispering to you. I so wish I had not ignored God when He spoke to me about Adam. I remember Him trying, I remember feeling compassion, but I chose fear over compassion. I wish I hadn’t. Adam could have used a friend and I could have, too.

Chase – We do not care if you are the smartest or fastest or coolest or funniest. There will be lots of contests at school, and we don’t care if you win a single one of them. We don’t care if you get straight As. We don’t care if the girls think you’re cute or whether you’re picked first or last for kickball at recess. We don’t care if you are your teacher’s favorite or not. We don’t care if you have the best clothes or most Pokemon cards or coolest gadgets. We just don’t care.

We don’t send you to school to become the best at anything at all. We already love you as much as we possibly could. You do not have to earn our love or pride and you can’t lose it. That’s done.

We send you to school to practice being brave and kind.

Kind people are brave people. Brave is not a feeling that you should wait for. It is a decision. It is a decision that compassion is more important than fear, than fitting in, than following the crowd.

Trust me, baby, it is. It is more important.

Don’t try to be the best this year, honey.

Just be grateful and kind and brave. That’s all you ever need to be.

Take care of those classmates of yours, and your teacher, too. You Belong to Each Other. You are one lucky boy . . . with all of these new gifts to unwrap this year.

I love you so much that my heart might explode.

Enjoy and cherish your gifts.

And thank you for being my favorite gift of all time.


Love,

Mama

Unglued

I started reading a new book today called Unglued: Making Wise Choices in the Midst of Raw Emotions by Lysa TerKeurst.  They've been talking about it and with the author on KLove this week and it sounded like something I've been needing to hear.  I'm only on the 2nd chapter right now, but it's already hitting home. 

L is starting Kindergarten this year, in thirteen days to be exact.  I'm nervous.  I'm scared.  I'm excited.  I'm anxious.  My biggest source of anxiety, however, comes from deciding whether or not to talk to her class about her Fragile X, about what makes her behave the way she does, talk the way she does, do anything the way she does.  It's something that I think should be done, but is it something I want to do? 

The answer was thrown at me full force today.  I realize I don't have a choice. 

When I went to pick L up from daycare today, the teacher in her room called me over.  This particular teacher is not the one that's normally in there.  L had her previously and she is K's teacher now, so she knows L well, loves her immensely, and thinks of L as her own.  This particular teacher understands L and wants to protect her.  And for that, today especially, I can not thank her enough.

It appears as though a little boy made L cry today.  I'm not 100% sure what the circumstances were or how it all started, but he began to make fun of L because she "still wears a diaper".  He proceeded to call her a baby, pointed at her, and laughed.  When she began to cry and say "I'm not a baby", he antagonized her even more. 

The teacher, upon hearing a commotion, approached them and found out what was happening.  She immediately reprimanded the boy and allowed L to go to her safe place to cry it out.  When the teacher explained to him that L had special needs and wasn't able to use the potty yet, he said, "She's stupid!" and started laughing. 

Thank goodness, when the teacher told the boy's dad about this, he was pissed and said, "Rest assured, I will take care of this!" 

In the meantime, I have a little girl whose feelings have been hurt and she was able to comprehend what was happening in that moment, enough to be brought to tears. 

I realized today that the choice has been made for me.  I must talk to L's class when she starts school in two weeks.  I've always been afraid, but as Lysa says in her book, "What kept me from making changes was the feeling that I wouldn't do it perfectly."  I know now that, while I may stumble through talking with her class and come unglued, I can't let fear prevent me from changing the way my daughter will be treated by her peers.  I must rely on faith to get me through it - faith in myself that the words will come, and faith in her peers that they will walk away with a better understanding of my little girl.

This will be a good year!  I just have to learn to not come unglued.

*Guest Blogger* Our Story and Forgiveness

  I wrote the following way back in 1995.  Long before I ever knew of Rachelle or what my life would entail.  I used to write a lot of poems and just various writings.  It was a cathartic process and many times what might look like a writing directed towards someone in particular, really wasn't.  Often, they were just dreams of what I wanted my life to look like.

Without My Heaven

My life has had its ups and downs
The Kings and Queens their broken crowns
But if all of this stands tall and true
Then tell me just why I have you
    Someone who cares and feels my pain
To put up with me and still be sane
    Without you in my life
To help me through the toils and strife
Would be close to never and next to no way
That I would make it through one more day
    The love you give to me each night
Gives me hope that I just might
Hold on to you forever and then
End each night with a grateful AMEN

Then, on August 4th, 2004, I found her.  The one girl that I wanted to spend my life with.  I knew Rachelle way before that night.  We originally met at Cannon Air Force Base, New Mexico at a Squadron Christmas Party in 1998.  She was going to school at Texas Tech University in Lubbock and was dating a co-worker friend of mine.  Rachelle does not remember meeting me, but I do remember her.  It was a brief introduction, but I remember thinking she was pretty damn hot.

  Fast forward a few months and I am now stationed at Yokota Air Base, Japan, and as luck would have it, again with her boyfriend.  She had come to visit him and, once again, we met.  She remembers this one.  We exchanged email addresses and became email buddies.  She would forward funny or poignant emails on occasion and vice versa.  She sent me an invitation to her graduation from college (I never did send her a gift).  We were long distance acquaintances, if nothing else.

 At some point, Rachelle and her boyfriend broke up.  He got out of the Air Force, I lost contact with him and then I moved on to Spangdahlem Air Base, Germany.  After two years in Germany, I was getting ready to move to Lackland Air Force Base in San Antonio, Texas.  I bought a brand new Ford Ranger and it was to be delivered to a dealership in Austin, Texas (for the life of me I have never figured out why they delivered it to Austin instead of San Antonio... but damn am I glad that they did).  I remembered that Rachelle was now living in Austin, so I sent her an email asking her if she could pick me up at the airport.  For her troubles I would take her to dinner.  I arrived in Austin on the 4th of August and somehow we missed each other in the terminal (knowing her she was probably in the bathroom).  I called her once I got down to baggage claim and did not see her.  She was upstairs and said she would be right down.  When I saw her at the top of the stairs, I knew that I had to date her... or maybe I was just horny and wanted to get laid... it was a long time ago and I do not remember that level of detail ;-).
 We went to dinner at Macaroni Grill.  I sweet talked my way into spending the night in her bed.  I was too scared to try anything and I never touched her.  She later told me that if I had she would have beat the shit out of me and never talked to me again.  The next day she picked me up at her apartment and took me to get my truck.  She went back to work, but told me I was welcome to stay at her apartment until she got home from work, but then she had to go to her second job.  I had no where else to be and I still wanted to try to work my magic, so I stayed.  I met her at her second job when she got off and we decided we needed to go eat dinner.  She jokingly asked if she could drive my brand spankin' new truck.   I said yes and she just gave me this 'are you serious? look'.  We traded keys and we took off.  I stayed the night for a second night in a row, but my smooth moves (lol) were not really getting me anywhere.  OK, I did not even attempt anything remotely resembling flirting... she was quite intimidating.
 I woke up the next morning and drove to San Antonio, but I could not get this beautiful girl off of my mind.  I'm pretty sure I called her every day and we agreed that I could visit her over the weekend. She called it stalking, I called it pursuing.  She told me that she would never date a smoker.  I quit.  For the next couple of weeks we took turns at making the hour and a half trek to see each other.
 It was about three weeks later that we finally kissed. 
 We had a whirlwind romance and three months later we started making plans for our wedding.  We said our vows in front of our friends, family, and God on October 15, 2005.  Less than two years later, we welcomed L into this world and three months after that I went to Korea for a year.  July 24th, 2008 we received our Fragile X diagnosis... we were three months pregnant with K.

 Fast forward to some point after K was born and I started losing sight of the vows I made.  I withdrew, I became depressed.  I never was very good about helping with the upkeep of the house, but it got worse.  That is a period of my life that is very foggy.  I just sank into my hole and nothing could bring me out.  I could tell it was taking a toll on Rachelle and there were times that I tried, I really did try... but my hole was too deep.  I was sure that I lost Rachelle and that we were only staying together because it was easier that way. It was easier to stay together than it was to get divorced, THAT was the only thing keeping us together.  I was sure that I did not love her as my wife and that she did not love me as her husband.  I had convinced myself that we had love for each other as the mother and father of our children, nothing more, simple as that.
 This was no way to live, so I began making plans for divorce.  I picked out an apartment, I had figured out a budget and how much I would give Rachelle each month.  The only thing I had not decided on was when I would leave her.  For all intents and purposes, I was living an entirely separate life away from Rachelle.  She knew we were not well, but she had no clue how far away I really was.
 May 23rd and 24th, 2012 - It all came to a head.  We finally talked.  I had gotten so wrapped up in my job, our children, the Fragile X world.  I was so wrapped up in everything EXCEPT for Rachelle, that we failed to communicate the way we needed to.  We laid it all on the line and it was anything but pretty.  I told her everything.  I was absolutely positive that she would not want me in her life anymore.  I had betrayed her love, I had lied to her, there was no reason for her to WANT to stay married to me any longer.  No reason except for her immeasurable love for me.  Rachelle NEVER, not for a single moment, stopped loving me.  Not once did she ever NOT want me to be her husband... but I lost sight of that, big time. 
  I screwed up big time and it cost us both a lot.  It cost us some good friends who may never forgive me.  It cost Rachelle and I time.  Time that we will never get back.
  Since that day, we have made wonderful progress.  We are both happy, happier than we have ever been in fact.  I have renewed my faith and will continue my spiritual walk, with Rachelle's help and with the help of some very dear friends.  The one thing that will always stick with me is when Rachelle looked at me with such intense hurt in her eyes and said, "I forgive you."  
  I will live the rest of my life making it up to her because I never again want to forget that I made a promise to her - To Have and To Hold From This Day Forward, For Better or For Worse, For Richer, For Poorer, In Sickness and In Health, To Love and To Cherish; From This Day Forward Until Death Do Us Part.

I Want You to Know

Last night, we went to Rudy's BBQ for dinner.  This is a place we enjoy as a family, a place we've been to many, many times in the past 5 years.  The girls love the sausage and almost always ask for seconds of the creamed corn.  They both like to pour their own bbq sauce onto their butcher paper.  They both break their plastic forks at least once per meal.

We had quite the different experience last night, though.  Shannon went to get our drinks while the girls and I went to sit down.  I told them "sit here and I'm going to get the forks".  This is the same procedure that has occurred numerous times before.  However, last night, when I began getting our plastic-wear, I see L walking up to me.  She has tears in her eyes.

"What's wrong, baby?"  I ask her concerned.

"I'm scared" she cried to me.

Scared?  Scared of what?  She never lost sight of me.  She was with her sister.  Her daddy was also within sight of her.  She was in a "familiar" place.  What was she scared of?

I knelt down, gave her a hug, held her hand, finished getting the setup, and started walking back to the table.  She didn't want to walk, though.  She grabbed at me, held on to my leg tightly, and said she was scared again.  So, I held her close to me as we made our way back to our table.

Once we sat down, she buried her head in to my shoulder, not wanting to let go.  I held her for a few minutes and then began getting the girls' plates ready.  (That is no easy task with one hand.)  L continued crying, not wanting to be untouched.

We did what we could to get her to eat as we stuffed our mouths faster than we've ever done before.  She kept saying, "I wanna go home".  It was heart-breaking.  She eventually went and sat on Shannon's lap, wrapping her arms around his neck as K and I finished eating and cleaned up our table in record time.

As soon as we got up from the table, L started smiling and  saying, "We going home now?"  I've never seen her so happy.

What caused this strange situation?  Fragile X Syndrome.  L was experiencing a high anxiety moment, a common symptom of FX individuals.  No matter what we did, nothing could alleviate her fears.  She was out of her comfort zone for a reason unknown to us, and all we could do was to take her home, her safe place.

I tell you this story of last night not because it was a completely uncommon occurrence or something new.  I am sharing it with you because today is National Fragile X Awareness Day and I want to make you aware of what a typical family outing with a child with Fragile X can be like.  I want you to know what Fragile X is, and how it manifests itself.  I want you to know.

Fragile X Syndrome is the leading known cause of inherited mental impairment. FXS is the leading known genetic cause of autism.  It can cause ADD, ADHD, autism and autistic behaviors, social anxiety, hand-biting and/or flapping, poor eye contact, sensory disorders and increased risk for aggression.  Gross motor skills, fine motor skills, cognitive delays ... the list is seemingly endless.

The one thing I know for sure, though, about Fragile X Syndrome is this:  I love my daughter that is affected.  I love my friends' children who are affected.  They are all beautiful, loving, caring people who have taught me more about life than the 30 years of living before knowing about FX.  We have been blessed beyond measure, and for that, I am truly thankful.

For more information, please visit www.fraxa.org or www.fragilex.org.  Now, learn something new today, and go out and spread the word!