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.
Sunday, June 15, 2014
Tuesday, May 27, 2014
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.
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/
**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/
Monday, April 28, 2014
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.
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.
Friday, January 17, 2014
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.
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.
Friday, June 7, 2013
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.
Thursday, May 16, 2013
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!
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!
Tuesday, January 1, 2013
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.
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.
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