Taking time to play in the snow

I truly believe that I was chosen for this life.  I believe it all happens for a reason and we are not given any more than we can handle.  Yep, there are days that I feel like it is almost more than I can bear, but deep down I know it’s all part of a bigger plan, one that I am not privy to yet.

I have often said I worry more about Victoria than I do Logan and joke about how Logan is my “easy” child.  I know all parent struggle with “dividing” their time equally among their children, but I often feel that Victoria gets short-changed on a lot of things.  It’s difficult for us to go places, do things unplanned etc because of fragile x.  Fragile X sometimes rules our lives as much as we try for it not to.  It’s always there and always will be.

As many people who know me know, one of the things I look forward to every year, is our National Fragile X Foundation Advocacy Day.  Every March, we meet for 2 days ending with our visit to Capital Hill where we meet with our elected officials to ask them to make sure to include Fragile X Syndrome and Fragile X Associated Disorders in their funding and to vote in favor of some other bills that directly affect not just FX but the disability community as a whole.  The ABLE Act being signed into law in December was a culmination of requests like that from not only our group but others.  Its something I never thought I could or would do, but look forward to it every single year.  Its empowering to meet with your elected officials, whom work for us and ask them to do this and then be able to return the next year and say “thanks” or even “why did you decide not to support us?”

After my trip last year and seeing some sibling advocates, I came home and asked Victoria if it was something she would like to do.  She said yes so I saved all year-long and we were blessed enough to be able to not only afford the trip for both of us, but be able to stay longer AND have some spending money while we were there.  Again, it all happens for a reason! As the time got closer, I got more and more nervous about taking her.  Was she old enough? Did she really care enough? Could she handle it? Could I handle it?

Just before we left, I saw a post from a friend on facebook about ways to “deal” with your gifted child and when I read the article, I saw soooo many things that just yelled Victoria and why we sometimes have challenges with her. It’s not so much the FX! I decided to use the opportunity to change the way that I reacted to her while on this trip, with it being just her and I alone for 4 days! 4 DAYS!! What was I thinking???!!!!!

As usual, it all worked out like it was supposed to!

The most amazing thing that I got out of this trip, was the ability to sit back and watch her in a completely new element and just enjoy her.  It was something I had decided to do after we had an “issue” the very first day when we were both exhausted.  The rest of the trip was THE most pleasurable little girl you have ever seen.  This was the first time probably since she was born, where she was truly the center of my world.  And for me, this trip was the first time I was able to sit back and see the little person she is becoming.  I got watch her and experience DC through her eyes.  I have been to DC a total of about 8 times now, but this was her very first.  So often, I just asked her what she wanted to do, or where she wanted to go and she controlled how we got there.  “You are driving this bus” was said more than once.  She really and truly blossomed in this environment.

She awed them in our visits and by the time we left, she was maneuvering the DC Metro stations like a pro! She learned and had fun and never complained once! We encountered winter storm Thor, where the entire city was shut down but it didn’t stop us.  We played in the snow and even got lost.  We had a plan the next day of what sites we HAD to see before leaving and we managed each and every one of them, 7 sights in 9 hours, and NOT ONE SINGLE COMPLAINT!!

I am more amazed now and more in love with the little person she is becoming than ever before.  We absolutely needed this trip, together. I truly hope that this created a beautiful memory for her because I know it did for me! I will never ever forget THIS trip to DC.  On our way home, she told me that she has decided that when she gets bigger, she wants Logan to live with her….in his own room, of course…but she already gets that she will take care of him.

The joy on her face AND his face when they greeted each other in the airport, warmed my heart because for the first time, in a very long time, I realized that BOTH of my kids will be okay, as long as they have each other, and my job is simply to guide them as best I can. Just like my parents did for me.

This is my favorite picture of her from the trip! She is so engrossed in reading this poster about the man who murdered her favorite president.  This history nerd mom, couldn't be prouder!!

This is my favorite picture of her from the trip! She is so engrossed in reading this poster about the man who murdered her favorite president. This history nerd mom, couldn’t be prouder!!

Letter to my son

Wow! I can not believe it! Tomorrow, you will turn 11.  Where, oh where has the time gone? It really truly seems like yesterday that I just found out you were coming.  Geez! So many emotions running through me tonight.

I remember the day of our sonogram when they told us “its a boy!” Your dad responded with a resounding “YES!” which was heard in the hallway.  Me? My heart sank only a smidgen and really only from fear! I had only really ever been around girls and had no idea what to do with a boy and all that, equipment!  But, the moment I felt you kick in response to my voice, I knew that was it.  The moment I held you in my arms, my heart melted and then all I could think, was how this wonderful, beautiful, perfect little creature was totally dependent on me to guide him through this world.  Little did I know that almost 11 years and a diagnosis of Fragile X Syndrome later, YOU would be the one teaching me.  My sweet boy, you inspire me every single day to be a better person.  You have introduced me to a whole new world and taught me how to find OUR place in it.  You have taught me the true meaning of unconditional love and how to see the joy in everything around us.  I complain a lot less than I used to because, let’s face it, we have it pretty good. I thank God every single day for you and I still, rush home from work or where ever I am, to be home with you.  My favorite time of day, is getting greeted at the door by both you and your sister.

You are growing more and more each and every day, and you still manage to surprise me. You enrich the life of every single person you encounter, THAT is rare trait and one to be treasured.

So, my wish for you, my sweet sweet boy, on this the eve of your 11 year on this earth, is this (at the risk of sounding corny) is that “your life becomes all that you want it to”.

Happy happy birthday my sweet boy! I want to shout it from the rooftops and have the biggest celebration for you but I know that’s not what would make you happy.  So, I will try to dial it down, for you, so that YOU can have the day that YOU want.  You are growing up so fast my boy and try as I may, I can’t slow you down.  I am so incredibly proud to have been chosen to be your mom and I wouldn’t change one single thing about you.

Love, momma

Who knew you liked apples????

Who knew you liked apples????

Your most favorite place to be!

Your most favorite place to be!

Wishing for a do-over?

This has been an incredibly busy year so far.  One of the highlights so far is celebrating Victoria’s 7th birthday.  Geez! When did that happen? Seems like just yesterday, Lance and I were planning on moving to California only to discover that Logan was on his way and then Victoria.  Life just seems to happen.  There is nothing you can do to stop it or slow it down. All we can really do is our best to enjoy it.  I have typed and deleted about six times tonight as my mind is racing after an evening at work.  Yet another evening away from my kids. When I have my feeling down moments, I stop and think about how my life got to where it is today.  No where near where I planned, certainly not doing what I planned on doing for a living, still working nights and weekends and holidays and yeah, I wish I could have a do-over.  I wish that I had gotten into film school and moved to California, maybe I would have been sitting in the audience at the last OSCAR’s and hanging out with celebrities.  But then I look around me at the hand-drawn letters and pictures and the wrestling figures lying all over the floor and I realize that every step, every mis-step, lead me to this place right here.  No matter what dreams I had in my youth, the ONE constant that never wavered was that I wanted to be a mom.  Then, some might ask well if I am wishing, would I wish that fragile x had never entered our life? I don’t even like to answer that question.  What parent wouldn’t want their child to have the “perfect” life, the easy life but Logan didn’t get that option and you know what, its okay.  Everything happens for a reason.  Lying silently, undetected and unsuspected in my DNA, Fragile X was always there, I just didn’t know it.  Logan brought it to my attention.  Do I wish that he didn’t have to struggle? That he could tell me completely about his day, he could learn everything a second grader is supposed to be learning, that he could go outside and play football with his friends, and talk on the phone with his friends and…even have friends? yep but fragile x is what makes Logan….well, Logan.  Its was makes him who he is and who am I to try and wish that away.  Fragile x has even been somewhat of a blessing.  FX has made me who I am today.  Without it, I wouldn’t have met some of the most wonderful people that I know from all across the globe, not just in the fx world but parents of lots of “differently abled kids”.   I wouldn’t be an advocate, not just for Logan and FX but for anyone who needs it.  I wouldn’t have the Faith in God that I have today, I wouldn’t have the relationship with my parents that I have today.  So yea, life hasn’t turned out the way I had planned but you know what, its pretty darn good.  I have two beautiful children that I wouldn’t trade for anything in this world, I am married to a wonderful man who is an incredible father to my beautiful children.  So even if I never make as a writer, or teacher or any of those other wishes of my childhood, the best one did come true.  So, do I wish I could have a do-over? if its all or nothing, then nah, I am pretty good right now.  ImageImage

Never Give Up

ImageA few weeks ago, I was so very fortunate to be able to go to Washington, DC.  I look forward to the trip every year for a variety of reasons, here are just a few: 1) As a Southern girl, even this harsh winter, I don’t get to experience snow, REAL snow, not the brown yucky stuff that we get here that shuts down the city for a day or two, but the beautiful white powdery stuff that blankets everything. Because we go in March, the timing is usually that it snows a few days before so I get to see some but this year, it snowed the day before we got there and stayed cold so it was my first real experience with snow.  It took everything in me not lay down on the grounds of the Capitol and make a snow angel, so I opted for the first thing I thought of, and wrote “FX” in the snow. It came out awesome! 2) The chance to meet with our elected officials and their staff and to be a part of the legislative process is truly an experience every one should have at least once.  There is something about being on Capitol Hill and walking those halls that just makes me proud to be an American, not to mention it feeds my inner history nerd to be surrounded by all the history of that beautiful city and to be able to either educate them on Fragile X Associated Disorders and just give them an update on how we are doing, its always such an incredible feeling that is difficult to put into words.  3) Its a chance to see in person some of my incredible Facebook FX Family and get to bond and catch up and sometimes even meet for the first time but we all have something in common, Fragile X was introduced into our lives and we can laugh and console and educate and just “get” each other for 24 or 48 hours. 

While we were there, someone just happened to mention something about STX-209. Every once in awhile, when I hear it, my stomach drops and my heart twinges just a little. Then, I stop and realize its March and Logan took his last dose in July of last year…..and we are okay. Really! We are!! Its amazing to me and my head is sometimes spinning with all the changes I have seen in him since coming off of the drug. He has SOOOO many words, sometimes his sister has to tell him to stop talking! Seriously!! I turned on a Winnie The Pooh movie and he named all of the characters as well as funny parts of the movie (honey, pot, books, mess, etc)
He came home with his report card today and his progress report and he actually has objectives on his IEP that he has ACHIEVED…things like counting, using some sight words, and tracing his name. He is much more attentive with his sister and even asks her to play with him. There is so much less frustration because he can communicate so much better lately. On our visit to the neurologist last week, when she walked in the door, he turned to her and said “hi”…she stopped and looked at me and I just smiled.
One piece of advice that I always give to parents of non-verbal children is one that I got a few years back on my very first Advocacy Day. It was my very first encounter into the FX world, I had never met any other family or person affected with FX and I was sitting at a table full of them! I sat across from a couple from Connecticut who were telling stories about their kids and they were talking about how their son was talking. I was so intrigued because at that time, I had no idea what to expect and I just knew that Logan, then aged 5 I think, was completely non-verbal and life was difficult in our house to say the least. I leaned in as close as I could, totally enthralled as they shared stories of their kids. I began to ask questions and I am not sure exactly what I said but I expressed how I wondered if my son would ever talk, ever tell me he loved me or if he was hungry or where it hurt…he looked me square in the eye and told me, “Never give up. He will talk”. I wanted so desperately to believe it. I was also sitting next to another parent who had an older child and I couldn’t tell you at all who this person was or is, but I remember her saying rather negatively that she was still waiting to hear her son talk. I made a decision right then and there to only think positively where Logan was concerned. I couldn’t get bogged down in all the what he can’t or won’t ever do. I had to concentrate on what he could and would do. So, I turned from her and turned back to this other parent and continued to hang on his every word but the ones I remember the most and carry with me always is “NEVER GIVE UP” so I haven’t and I won’t.
And tonight when I cuddle up next to my boy, and he tells me “night night” and “love” without me prompting (yep! THAT happened earlier this week!!), I will smile and thank God for sending me the people He sends with the messages He does, just when I need them the most. Most of all, I will never give up.

Sometimes I forget…

Sometimes I feel as though my entire life is consummed by Fragile X.  Its almost always on my mind, on my person, and in my DNA.  But occassionally, I forget.  Seriously, it happens.  I work so very hard at creating memories for my kids.  Our memories are what make us…US, its what helps us through the good times and most definitely the bad times.  It ties us to our past and our loved ones.  We have no idea how much time we have on this earth, so I work extra hard to make special memories for my kids.  One of my favorites is birthdays.  I love celebrating my kids birthdays.  Its a day that is super special to me because its the day I got to meet them for the first time and certainly a reason to celebrate.  

My baby boy, yep, he will always be my baby, will be 10 next Monday.  DOUBLE DIGITS! Holy smokes! But with that comes a whole new set of fears for the special needs parent.  This whole birthday party thing is new for Logan and me.  Thats when it hit.  I sent off his birthday party invitations with him to school today and told him to pass them out to his friends in his class.  I stopped at Target on the way home from dropping them off to get stuff for a birthday party Victoria has this weekend and to pick up some stuff for his party next week.  As I walked through the doors to Target, it hit me.  I literally stopped in my tracks.  I suddenly realized that just last year was Logan’s very first birthday party with friends and we had stx-209 to thank for it.  Then I realized that we didn’t have that this year and I almost felt a panic attack coming on (okay maybe slightly dramatic) but all those fears came back and I realized that for a few moments I had forgotten.  Forgotten that he may not even want to go to Chuck E Cheese next Wednesday, he may have a meltdown in the parking lot, he may not want to eat or play, it may be loud, it may be noisy and crowded and we won’t even get a table. Then again, it could be fine but as the parent to a child with fx, I have to prepare for the worst and hope for the best.  

I had also forgotten for a short time about stx-209.  Has it really only been 5 months since our world was rocked by the news? Logan’s teacher told me, just yesterday, “We don’t need the pills” and I think she is right.  Logan’s vocabulary has continued to explode with 2 and 3 word sentences almost daily now.  When I have conversations with him where he can actually answer, I forget for a moment.  Then, I realize that he is about to be 10 years old and still can’t do alot of things that other kids his age can.  Will we ever have a sleepover? Will he ever write a letter? Will he ever get to lose himself in a good book? Will he ever say to me “remember that time we..?” I sincerely hope so and only God knows and I continue to pray for it everyday.  

Until then I will just keep on, keeping on and continue to make those memories.

 

One more day, one more pill: thats it.

One more day, one more pill: thats it.  After the pill we give Logan in the morning, I will box up 3 unopened packets and a few open ones and fedex them back to our clinic.  What happens to them after that? I don’t know.  What happens to us after that? I don’t know.  

I still haven’t had the heart to tell Logan that this is it, we are done.  While his communication skills have blossomed, I am just not sure if he is ready.  If I could, what would I say? 

Probably something like this: “I’m sorry.  I’m sorry for that there are no more pills.  I’m sorry you had this new beautiful world opened up to you and for you, and the door might close on it.  All I can ask is please don’t leave me.  I have grown so accustomed to the little character you have become over the past year and the thought that I might lose that is heartbreaking.   The knowledge that you have real friends at school helps ease my anxiety when I drop you off everyday knowing you can’t tell me how your day was when you get off of the bus.  Seeing the relationship between you and your sister blossom warms my heart.  The joy I get from seeing you pick up a toy and play with it, the right way, REALLY play with it, is more than I thought possible.  I will not give up on you.  Fragile X may be in our DNA, but it WILL NOT take you over.   I have always told you I would fight a lion for you and baby, right now this is our lion.  We will pack up those pills and send them back and we will move on.  I will find something else that will help.  You know the cowboys you love to watch so much? Well, this is our frontier.  There are amazing things being researched every day. and they need our help. So, I’m sorry this one didn’t work out the way we wanted (just yet) but maybe there is another one out there that will be better! So until we find it, I just hope that you will continue to grow and blossom.”

 

To read more about our story and more families involved in the STX-209 study, please visit http://www.stx209stories.com.  For more information on Fragile X Syndrome, please visit http://www.fragilex.orgImage

Eternal pessimist

My husband always accuses me of being the eternal pessimist. Maybe I am but I just prefer to expect the worst and be pleasantly surprised when it turns out better than I expected.

We 4 days away from our last dose of stx-209. FOUR days! When I first got the news about the end of our extension, I was absolutely heartbroken. All I could think of was all the advances Logan had made since being on the drug, all the things we had been able to do, ALL the words. Then my thoughts shifted to all my friends who’s lives had also changed while being on this experimental drug. Did we all put too much trust and too much hope into this drug? Probably. But something that I think gets lost when you have a child that is special needs, is the person, the parent that you so wanted to be. The grief that you suffer when your child is labeled as “different” never really goes away. You deal with it, you move on and you shove it deep down inside of you because you can’t let it consume you. You have a responsibility.

While taking the drug, so many families, us included, had a brief glimpse into the what it was like to be a little more normal. Now, I am not saying by any stretch that by taking this pull, life was just super fantastic. Logan didn’t wake up one day, have no more meltdowns, and walk into the room and say “good morning mom and dad. I would like to go outside and play today”. Oh how I wish it had happened that way, but it didn’t. What it did do, was allow us a few less meltdowns and certainly a few more words. What it also allowed us, is the luxury of getting comfortable. Comfortable with the good news and good reports we were getting from school and camp, comfortable with letting him play with the neighborhood kids without worrying about whether or not they would understand him, or he would take the football game a little to rough.

So upon hearing about the cancellation, I thought we would immediately lose all of that. The interesting thing about this whole experience, okay, there are A LOT of things that are interesting, is that the titration experience is just like all of our Fragile X kids: vastly different. We are all on different time schedules, some started mere days after the announcement and some havent even started yet. Some kids have adapted well with very few bumps in the road, and others, well the stories just continue to break my heart.

But, for us, once again, I expected the worst and have been pleasantly surprised. My husband actually started the titration process without me. At first I was slightly miffed, but I know, and he probably does to, that left to me, I would have waited until the last possible second. We are sending back 3 completely untouched, unopened boxes! We were only on 10mg twice a day. From what I knew, the maximum dosage was 10mg three times day. I briefly thought about upping Logan’s dosage just to see HOW he react. I might never have the chance to know what he would do on a higher dosage. But, we started the titration and there was no going back. But, so far, its been okay. We have had just a few meltdowns that seem to be triggered for no obvious reason but other than that, its been almost, dare I say it, pleasant??!!! Logan seems to be adjusting well, he has been laughing more, interacting more, and even picking up new words. Yesterday, his sister even complained to me that Logan would not be quiet! I wanted to laugh because SHE is the one that is always yakking so for her to complain that Logan is talking too much, is unbelievable. Then, I wanted to cry because for the first time since May 15 I thought we might actually be okay.

Then, it hits me yet again. Still waiting for the proverbial other shoe to drop. I start wondering so is THIS the perfect dose for him? Now, whats going to happen in 4 days when there are no more pills (well sadly we will still have pills but we have to mail them back) Even though we seem to be handling the titration process smoothly, there is still the underlying worry of what will happen when we give him the last pill. So for us, for now, we seem to be status quo. Once again my penchant for expecting the worst has left me pleasantly surprised. I can only hope that in 5 days, I will be able to say the same thing. For now, we just take it one day at a time, prepare for the worst and hope for the best.

To read more about our story and so many others affected by the stx-209 extension cancellation please visit: http://www.stx209stories.com, on facebook, Fragile X and Autism Families For Stx-209.

For more information on Fragile X Syndrome, please visit http://www.fragilex.org.