Clouds, May 2010

Clouds, May 2010
Clouds, May 2010: This picture was taken from the car window on Route 80 in NJ. The lines in the sky are obviously from planes, but the fact that they form an "x" caught my attention. And after I snapped the pic, I noticed the cloud to the left as it looks like a boy's face.

Thursday, September 22, 2016

kinder side

Dear Fifth Grader,

Or sixth grader... I am not sure, except that you're a young boy who interacted with my son during recess today. I can not say if we ever met because I do not know who you are, but I am Hayden's mom. I was once a fifth grader, too-- that was a long time ago but I still remember it well.

In the school district that I went to as a child, our Middle School had 6th, 7th, & 8th grade. For me, both 5th & 6th grade were hard years because the elementary school I went to actually closed after 4th grade. So we not only had to attend 5th grade at a different school, but we would only be there for one year. Then of course 6th grade came & it was another big change entering the Middle School. 


Fifth grade had its highs & lows. We were the new kids & I remember having a lot of schoolwork-- more than any year before-- but I also remember meeting new people, & doing really well & earning my first writing award. I particularly enjoyed writing, painting & drawing, as well as gymnastics & swimming. I was grateful from a very young age to have these outlets that made me feel good. 


I am not sure what your hobbies may be, but I hope you enjoy them & make time for them. Hayden has wonderful interests! Thanks to youtube I have an even clearer idea of some of the things that really hold his attention-- everything from fixing cars & trucks (or working with tools in general), to doctors helping patients, or even kids singing in a school chorus. He also loves spending time with family & friends, & being outside.


I know that being a kid can be a lot to handle, or very overwhelming. And not just for someone who is in fifth grade-- you could be in any grade, & even adults get overwhelmed sometimes too. As a matter of fact, I felt very overwhelmed this afternoon shortly before Hayden got home from school.

You see, I found out that Hayden's feelings were hurt during recess. I would never want his feelings to get hurt, but I also do not want your feelings to get hurt either-- so I do hope you're okay.

I do not want to quote the words that (I heard) were spoken to him. And I do not need to because either way, you know what you said & how you said it. Just know that Hayden does belong in school as much as you or anyone else & that is where he is going to stay. And right now his life is all about school, & home, & community-- probably much like yours. Furthermore, while there are people who live in Institutions for different reasons, Hayden lives at home with his mom, dad, & our dog Sammie. He is a very happy person & I hope you have the opportunity to get to know him better. You will be pleasantly surprised just how much he understands & how much fun he is to be around.

Lastly, many people speak differently than other people... the way we pronounce our words can be affected by an accent, or by the muscles in our mouth, or by the way our brains work. The words we speak are our verbal language but there is also something called receptive language. Receptive language is understanding what people are saying to you. For the most part, Hayden's receptive language seems to have developed similar to everyone else's. However, his verbal communication-- while it continues to improve nearly every single day-- is still developing differently. This is because he has fragile x syndrome (which I am guessing you already know). Speech delay is not the only way that fragile x affects Hayden, but it is one of the most easily noticed differences.

At the beginning of every school year I speak to the kids in Hayden's class about these & other differences. I always tell the students that it's okay to notice differences, it just means you're paying attention. But it is never okay to make fun of someone. I do not know who you are because the school did not tell me, but the reason you should not make fun of someone or bully them is because (1) you will make the other person feel bad & (2) you will also make yourself look bad. And that would not be fair because the truth is I bet you are a really great kid... just like Hayden.

It takes a lot of work to be in control of how we make others feel, & it takes a lot of practice. Sometimes I am not good at it either, but we are all capable of trying. Hayden has to work on this, too-- because fragile x can make him feel extremely overwhelmed... even without being in a new school. But underneath his challenges Hayden is a truly kindhearted person & one of the very best I know. I am guessing the same of you. 


I told the person I spoke with at school that I think it would be a great idea if you had a chance to help Hayden every once in a while, because I am confident you could both learn from that.

I do hope moving forward you allow Hayden to see your kinder side. I bet you're someone that he could look up to.

--

Monday, September 12, 2016

candle snuffer

Changes are a big deal in our little fragile x world, especially sudden ones. I’m well aware of the fact that sometimes changes are unavoidable, but there are reasons why I practically advocate until my lips are blue to maintain consistency for Hayden. I think it sucks & I wish I didn’t have to because it’s mentally exhausting sometimes... constantly putting out all of these little fires. But Hayden has more than his fair share of curve balls & I will always help build successful environments for him.

Today is his 5th day of 5th grade & already there are countless adjustments for him across the board. And today started out with even more unexpected changes. (Don’t worry, I always calmly communicate to the appropriate people & I do not need anyone to do that for me.) 


But it sure would be helpful if there was a more universal understanding of the real impact that changes can have on our kids, not just mine… & how inconsistencies & transitions can heighten any child’s anxiety to the point that they do. I have to believe in my heart that maybe things would be different but until I have better evidence of such understanding, for me, this is why I do what I do.


There will always be concerned parents, impossible budgets, & specific laws that need to be adhered to— & sometimes when you mix all three together, it’s a recipe for complete frustration. But 
for lack of a better way of putting this… I also hope people in the community who are willing to speak up remember to leave their pitchforks at home. Just because many of us have overlapping concerns does not guarantee we’ll see results faster. I do not envy the often difficult position that the school administrators are in & my goal remains to help, not challenge. Hayden's needs should only be an opportunity for others to step up. 


That being said I pray that positive, helpful decisions are on the horizon. Middle school is a very difficult adjustment for us & sometimes Hayden just needs a little bit of help letting the world see what a bright candle he really is.


--

Thursday, September 8, 2016

the X and the whY

From the literature to the lollipops... here is what we've been up to as Hayden officially became a middle school student.

Although these efforts closely mirror the new-school-year routine that we've already been adhering to since First Grade, this year is very different. The 2016-2017 school year marks the first time that Hayden's learning environment has changed, since 2008.
He was three & now he's eleven. 
First Day of School Pictures, Pre-K & Grade 5

We begin with the annually updated Positive Student Profile. I wouldn't mind taking credit for this idea but I can't-- it's one of the many incredible ideas that I learned from other parents within the fragile x community. This particular version was created (& then customized) off of an existing Word template.

Here is the front of Hayden's current Student Profile:


And here is the back:

I would also like to acknowledge & thank a few other moms because if it wasn't for their input I doubt if I would have (a) thought of doing this & (b) known how to, or what to focus on.
First, Paula Fasciano... because the Student Profile she created for her younger son, Benjamin, is still a very helpful resource. And a lot of the verbiage she used was exactly what I was thinking but wasn't quite sure how to say.
Next, Melissa Welin... because she too shared the Student Profile she created for her older son Caleb. It included information that happened to be very applicable to our guy, & was quite a useful reminder of some points for me to outline on Hayden's.

Also this year when I presented Hayden's Positive Student Profile to the faculty at the middle school-- (yes, I really do this during a teacher in-service day--) I held up a book written by a well-known household name in the fragile x community, & someone who I am grateful to call my friend: Cindi Rogers


Becoming Mrs. Rogers is a detailed account of her & her husband's journey raising two sons with fragile x syndrome. But in addition to their personal experiences, the lessons learned & various techniques they've applied in their daily lives are truly invaluable for countless others. There are large sections of her book which are undoubtedly just as useful for educators & parents of children on any similar path. There is too much information in the book to fit it into my presentation, but I do introduce this so everyone knows it's another valuable resource available to them.  

Anyway, that's Part One of our new school year preparation-- updating & presenting the Positive Student Profile. This year I unfortunately (to say the least) ended up having to present with a tear-streaked face, following receipt of some unsettling news right before I was scheduled to speak to the faculty. But despite feeling blindsided & upset, I looked at everyone through my watery, red eyes & I somehow got through it. I am sharing this to let other parents know that if you're nervous you can do it & you'll be better than fine, you'll be great. 

Part Two is a different day with a different audience... it's the all-important Fragile X Talk with the students in Hayden's class. For this idea I owe a debt of gratitude to Holly Roos, a mom of two from Illinois. While both her son & her daughter have fragile x syndrome, her son is much more impacted by the condition than his younger sister. Holly has had years worth of successful fragile x talks with her son's classmates. 

So during Hayden's earlier school years, I used to read a book called Special People Special Ways. It's an adorable rhyming story with colorful & whimsical illustrations. The last page sums up its message very well:
Although we seem different,
inside we're the same. 
Our hearts are for caring, 
no matter our name. 
Although the book is not specific to fragile x, it is a great approach to acceptance for any young audience & I've recommended it to many others.

However now that the students are older, last year I switched to Fragile X Fred. The author is Jayne Dixon Weber, a mom of two, & her son has fragile x syndrome. 
So it's no coincidence that this wonderfully approachable story about two siblings is told from the perspective of a young girl, as she explains about her brother having fragile x.

When I speak with the students I also pull discussion points from one of the many valuable NFXF brochures:


Just to give a rough outline of what I said to the students when I presented this year, I actually opened with a little throwback...
I explained my fragile x talk from First Grade. At that time because the kids were so young I included a toy prop-- another idea from Holly-- which was a battery operated firetruck. I recalled how much the kids loved it with all the lights & sounds & so forth. And then I explained that I took the batteries out & asked who would still want to play with it... & how everyone in that First Grade classroom raised their hand. And I said I agree because you can still move the truck back & forth, you can still swivel the ladder or put it up & down, & the toy is still going to do a lot of stuff.

And I asked the fifth graders if they wanted to guess why I did that. Only two or three hands went up, but the first student to answer my question was a young girl who made a great point. She essentially said that I wanted to show them the truck wouldn't be boring. I like the way she put that because I think kids can easily relate to that perspective.

I nodded & added just because you might look at the truck & have certain expectations, & then realize it doesn't work the way you thought-- it's actually still a lot of fun. It works differently than you expected but it's still a firetruck.

This is an easy segue into Fragile X Fred, to further explain similarities & differences. So the next thing I did was read the book & since no one had any questions, I said, "Here's what I hope you remember: (1) Fragile X is just something Hayden was born with & you can't catch it... like hair color, eye color, & so forth. (2) You might hear speech or see behaviors that are different. This is especially true if a person with fragile x is overwhelmed, & you might act differently too if you're overwhelmed. But Hayden has to work MUCH harder than most people to get through that feeling. It is not bad manners & Hayden is never trying to be mean. It's just his reaction to feeling too many things at the same time." And then I told them I would get to the third point in a minute.

We paused for an activity which many of us in the fragile x community have come to know & love, thanks to Tracy Murnan Stackhouse, MA, OTR, and Sarah Scharfenaker, MA, CCC-SLP... the Founders of Developmental FX in Colorado.
Regardless how many fragile x conferences a person has been to, they will learn something new every time that "Mouse & Tracy" deliver a presentation.

Their approach to help others understand this "overwhelment" I'm referring to, more commonly known as hyperarousal, is unparalleled. So I asked for three volunteers & ended up with six, because these kids are awesome & enthusiastic & eager to help. I modified it a little bit from the original, but here's what we did.



I had two groups of three stand in front of the classroom & Person 1 is told to do nothing more than stand there. Person 2 is the authority & they are going to try to get information from Person 1, but they're rushing them & they're asking a lot of questions. Person 2 is instructed to ignore Person 3.
Person 3 is the environment. They need to distract Person 1 with sort of getting in their face... standing too close for comfort & annoying them with light touch & so forth. I let the activity go on for
 just a minute or two & then I asked Person 1 how they felt. The boy to my left shrugged his shoulders but he had this look of "what the heck was that" on his face. The girl to my right was smiling, and she said with very big eyes, "Stressed!" 


I explained to the class that this is how Hayden feels most of the time. So I said, "Now I want to tell you what the last point is that I want to make." And I handed everyone a little white card & a crayon. I told them to write down two things-
- a favorite food & an activity they enjoy, either at home or at school. For example, "sandwich" & "walking the dog".


I collected the cards & out of 19 students I showed them that Hayden had at least one-- but in many case two things in common with 16 of the responses.


So (1) Fragile x is just something he was born with & they can not catch it. (2) They may hear speech or see behaviors that are different. (3) Hayden likes a lot of the same things that they do. I reiterated that although Hayden might understand less than some people, he also understands so much more than most people realize. 
I closed the discussion by handing out goodies to thank them for their participation...
 & for attending so well in a classroom that was quite sweltering on that exceptionally humid day! 

emoji stickers & NFXF pencils 
a peanut-free & gluten-free sweet treat

I also 
printed letters to send home, so their parent or guardian would know that I visited the class & to share some information about Fragile X Fred. Including, "The students learned that there are many genes in our DNA-- & even in animals, too!" After I showed the parent letter to the students, one young lady raised her hand & asked if animals can have fragile x as well! Although I can not honestly say for sure whether or not any animals are naturally born with similar gene mutations, I simply said it just means that they have their own genes determining their fur color, or personality, & so forth. (That was one of my favorite questions!) Anyway, the letter is something I've been including every year since First Grade & I do believe it helps. 



Hayden is not in the room when I do either presentation-- to the faculty or the students-- but each situation is different & each child is unique. And some people believe this is not a great idea because it's singling a child out. I disagree.

I am not discussing anything with the students that they don't already notice. I am just opening up a conversation so they know why & that it is okay. 


The peer participation goes over very well! In Sixth Grade I am thinking about having one of the students read the book to the class. Either way, I hope to keep this up for years to come. 

To any parent who is on the fence about leading similar discussions, I hope you follow through with it because you will be amazed.

Awareness is knowledge. Knowledge leads to understanding. Understanding leads to acceptance. 

--

Saturday, September 3, 2016

trust


Typically it's flattering when people re-share something you have shared. Wouldn't you agree? Especially when you put something out in the land of social media & you say, "Please feel free to pass it on!" Strength in numbers, right? The virtual web via which all of us are connected can be powerful.

Of course sometimes this is positive & other times it is not so positive.

One day last week, approximately a minute after I shared something on social media, my words were captured & then shared again. They were pulled from their original source, taken out of context, & assumptions were made about the root of the circumstance.

I realize I am putting this out there in the middle of a holiday weekend which will significantly reduce my audience, but now is when I feel like speaking up. I am grateful for the person who I was able to confide in regarding the details of this situation, & for their honesty in explaining the most likely source.

I am very open about our journey raising a child with fragile x. I believe SO strongly in awareness... I wear it on my wrist, I display it on my vehicle, evidence of our efforts show all around our home, & most importantly I hope I radiate this awareness from my heart.

But this time my vulnerable words were stolen from me & quietly shared in private. I may never understand what the source was trying to accomplish. (If it were something in our favor, I wish they would have come to me first so I could have helped?)

But just in case my words have ever caused any confusion, here is what I am trying to accomplish:

A happy, productive, meaningful, safe, & fulfilling life for my son. I vow to ensure that famous smile of his never fades.  


Sometimes I receive praise for the way I handle myself & I do believe I have earned that. Other times I am emotionally drained & simply fearful about the future. But as I have said before, we are beyond blessed to have the support of people who truly keep us standing. They are as important to us as the air we breath. They are everywhere in our lives-- friends, family, home, school, doctor's offices-- both within & outside of the fragile x community. The metaphorical web via which all of us are connected is certainly powerful, too.

As a fellow parent I feel practically beholden to the ones who help make such a positive impact in my son's life.

I hope this sets the record straight.

--
Anyone who is confident that I would agree their heart is in the right place, please do feel free to share this. 

Monday, August 1, 2016

one for the books (or blog)

One time a couple of years ago I trimmed Hayden's fingernails by myself following a long, drawn out scenario like you would not believe. It was just one of those days when it was not going to happen, even with both parents assuming our usual approach of what we do to get through this. Finally when we were all emotionally drained, my devastated child with his tear-streaked pink face sat down, put his hand out in front of him, & said to me, "Please do it." He sort of sniffled his way through the whole thing but it was still amazing that it got done, with just my hands & his. When I finished he asked for his iPad & quietly retreated to his room.

Personal grooming & maintaining proper hygiene can be quite a struggle with people who have fragile x syndrome, despite how much they really want to feel good & look good. The difficulty is primarily due to sensory processing disorder & tactile defensiveness when it is time for hair cuts &/or hair styling, shaving, oral care, & nail trimming... to name a few. Dentistry aside, because I don't know anyone who loves that, but imagine trying to explain to someone like my son that most people gladly pay for someone to do their hair & nails... that going to a salon is a treat?!

Back in 2011, one of my blog posts described what it's like to trim Hayden's nails. As an analogy, I tried to illustrate a very complicated scenario of simply trying to cut a piece of paper.

To paraphrase, I said to imagine 
that you're wearing pants that are too tight. And think how your movement would be restricted if you had to sit on the floor, with your legs crossed like a pretzel. This sort of describes the uncomfortable pressure of having to safely get a large, desperately resisting child to sit somewhat still.

To understand how your hands are going to feel, make a fist with your less-dominant one while sitting on that arm.
Do this until your muscles start cramping, and your arm tingles. 

To understand the difficulty in maintaining precision, hold a piece of paper in your partially-numb less-dominant hand & try to cut the paper with a tiny pair of scissors using your other hand (the dominant one). It's going to be difficult but if the cuts are not precise then the paper will "bleed". 

But it is more than imagining trying to awkwardly cut a pretend piece of paper while your muscles are cramping. Imagine that someone is literally kicking you & pushing you while you're trying to do this. And at the same time, they are trying to pull that piece of paper from your tired, cramping, less-dominant hand. And the jerky movements from the person who is desperately trying to push & pull their way out of the situation, is also repeatedly asking you if you're done.
When I wrote that blog post back in 2011 Hayden was verbal & stringing words together, but not yet communicating in full sentences. And his articulation & pronunciation in general were still developing (as they are now as well). So the word done sounded like the word gun. And his voice would grow increasingly loud & desperate with each fingernail. "Gun? Gun? GUN? GUN??!! GUUUN??!!!!"


By now you are sweating, your muscles are throbbing, some of your extremities are numb, & you've barely survived trimming 5 fingernails but there are 5 more to go. And you have to completely flip-flop your position in order to attempt to safely control the other hand. 

In other words, time to start over again from the beginning. You can't back out now if you wanted to, because once the task begins the child will not settle until the follow-through is complete. Giving up would actually be worse than the struggle of finishing. 

Assume you have survived trimming all ten fingernails & you are now pacing to help yourself calm, while shaking your hands vigorously to regain feeling in them. And let's not forget this is a necessary task that must be repeated several times every month.

You wonder if your child will ever be desensitized enough to tolerate basic self care, let alone develop the fine motor skills to do it themselves! They are only going to continue to grow bigger & stronger. For the moment you feel hopeless & upset.

But as usual, your thoughts are interrupted by a much more important one... the one that resurfaces every time your child maintains such effort to resist a situation... because imagining what your child must be going through that they try so very hard to stop you... is not something that you want to imagine.

So like I said, one time a couple of years ago I trimmed Hayden's nails by myself. This afternoon was the second time that ever happened. But it was different & significant because it was actually quite calm.

Following me prompting him to retrieve the nail clippers from his room, he managed to sit beside me & let me trim one fingernail that was bothering him. Those are the ones that are typically the toughest because he has a sort of inner struggle with himself... wanting it to be over but unable to even start... & the anxiety of the follow-through only worsening the situation. It's tough to explain but when there is one nail that needs to be fixed, or one loose tooth, or one hair strand that is too long & needs to be cut... it is a nightmare following through with fixing whatever it is. Regardless how nonchalant we are.

So imagine my complete shock when I trimmed the one nail & then the one next to it. And then the one on the other side. And then I explained since there were only two left on that hand, we might as well finish. And we did! And then he asked for a prize-- which is fine-- & I reiterated how proud I was & said let's do the other hand & we will get a prize. We discussed where he wanted to go... what he wanted to get (a pickup truck)... & everything was going relatively well.

And then I got grossed out because of the amount of dirt under his nails... which surprisingly worked to my advantage because he thought my reaction was hilarious. So then I really played up the nausea & pretended to literally be on the verge of getting sick. 

At this point the only reason he was not keeping still was because he was laughing so hard.  

Of course me being so blind with pride next thing I know a simple trip to a local store for one $5 pickup truck turned into a pizza Play Doh set instead, plus a mini plush dog from that Pets movie, plus Nutter Butter bites, plus pita chips... & a failed attempt at sneaking in a police cruiser when I was up at the register paying.

But you know, maybe I'll allow myself to be hopeful that we can save that prize for another day.

One at a time...

--

Tuesday, July 26, 2016

Let who know about what?

What is LEK anyway? 

It stands for "Let 'Em Know"! 

Within the National Fragile X Foundation community, & far beyond, LEK is the annual theme of Fragile X Awareness Month! I like to think of it as Let Everyone Know!

Awareness-- & ultimately education-- is a tremendous part of this message. Generating resources is a crucial component, too.

If you know my son then you know that he is not shy about asking for money-- he is likely to target a man vs a woman, but either way this is a rather unique personality trait. He just really loves his bucks & without hesitation he will ask people (he knows well) for cash. But the good news is a dollar or two will suffice for his level of "greed"... which I assure you only comes from an innocent place. And thank goodness this does not carry over to strangers.

I suck at asking people for money. But it is very important to me to support the very Foundation whose efforts are unparalleled in helping a community that is near & dear to me. 


Obviously I have a personal connection to the National Fragile X Foundation. Anyone who has been paying attention regardless when they met us, but especially if you have known us since November of 2006 (our date of diagnosis), or both... also knows that this is not just about Hayden having fragile x syndrome... because fragile x is an inherited genetic condition...

Our journey is also about my late grandfather who was a brilliant man & a retired physician... & who passed away when I was about 5 months pregnant, not knowing that his Parkinson's-like symptoms were actually FXTAS... or fragile x- associated tremor/ ataxia syndrome... common in carriers, especially & more frequently in male carriers of the gene. This is the condition that snuck up on him slowly, later in life, beginning with difficulty holding utensils, & ultimately robbing him of his ability to walk.

This is about relatives who didn't understand why they were experiencing early onset of menopause... or FXPOI, which is fragile x-associated primary ovarian insufficiency... common in female carriers.

This is about the estimated one million Americans who carry the fragile x gene mutation, & who are at risk for developing one of the fragile x conditions-- including approximately one hundred thousand with fragile x syndrome.

This is about the research which will not stop at (only) supporting the community of people affected by fragile x & fragile x-associated disorders.

For example, so far fragile x is the only known single gene cause of autism. Furthermore, people with fragile x syndrome may also have seizure disorder. So without even going into further explanation, please understand these resources can ultimately help people affected by autism, or Parkinson's, or epilepsy... to name just a few.

I hope in the few minutes it has taken you to read this, you're already beginning to have a clearer picture of how broad the impact of this one gene can really be. Yes fragile x is technically considered "rare", but it is important to understand the true prevalence is greatly affected by an unknown number of people who are undiagnosed or misdiagnosed.

So where does the money go?

Well, these resources help support the mission of the NFXF in uniting the community of people affected by fragile x. This is achieved through education, emotional support, public & professional awareness, as well as research advances.

Then there are local families to think about.

Half of all funds raised during the LEK events directly assist families through the Community Support Network. The CSN is the parent volunteer program of the NFXF with Support Groups around the nation. I am Co-Leader for the New Jersey Fragile X Community Support Group. I also helped bridge communication between Atlantic Health & the NFXF, which eventually led AHS in becoming a member of the FXCRC. And ultimately, the establishment of the first fragile x clinic within the state of NJ.

The NFXF is tireless. Whether it be through educational seminars, workshops, social events, awareness opportunities, or outreach... or whether it be through offering scholarships to help families attend the Conference... the NFXF is always looking for ways to offer both immediate support while proactively advocating to help improve the future for all.

So, if you must, pretend I am a cute little charismatic 11 year old who is asking you for bucks... because the 40 year old mother & wife knows that you have way too many charities to choose from throughout the year.

But if you were in my shoes you would do anything in your power to help, too. These kids... these families... 

they're worth the effort. 


Publishing donation amounts is optional & donor names can be anonymous, too.  [<< click any of the highlighted words to support Hayden's 2016 LEK page]

--

Thursday, July 21, 2016

the best worst thing

"I'm having a hard time understanding how you all can be so happy."

I hear ya.

I am grateful for the person who shared this sentiment in one of the many social media group pages that I belong to. Specifically, a closed "room" related to the fragile x community. 


This was shared to people who have been/ are currently now/ or will be at conference. That's about as specific as I'll get.

Me, personally... I am not happy when I have to travel in general. I am not happy that I happen to be out of work right now. I am not happy that my husband had to take time off of work this week, after having just started a new promotion. I am not happy that I am away from my son for a number of nights in a row. I am not happy that I can't be in two places at once & orchestrate Hayden's daily routine this week. 


And last but certainly not least... following numerous appointments due to a curious welt of sorts which appeared on Hayden's back a number of weeks ago, I am not happy that the day I left for the fragile x conference we received confirmation that he tested positive for one of the strains of lymes disease. Treatable? Yes. Administering three doses of medicine in Hayden every day for ten days? You might as well tell us to convince a random animal
 out in nature to sit still & smile for a portrait.

Putting all of that aside it's important to point out that everything I've shared so far during this conference(& have been tagged in), can either be described as fun or productive or both. Happy, joyful, hopeful... surrounded by people who share the same sentiments. 


How can any of us be so happy? We're here because of an inherited, genetic disability that affects our families. Heck, the first conference I went to I didn't even get through Day One before having a nervous breakdown on the phone to my sister. I remember standing in front of the hotel, curbside. Sobbing. I told her I went to a session about siblings... (a) I assumed Hayden would not be an only child & (b) in the interim maybe my sister-in-law would find some of the information useful for her (then) youngest, my niece, who was diagnosed with Down syndrome after she was born.

But you see during that sibling session there was a video of a young child talking very candidly about their brother with fragile x, & how he loved him but wished he could do more stuff together with him. He was reluctantly sad & I could not even begin to process what our options would be for the future. I remember telling my sister, "What am I supposed to do? Have three kids? How can I have only one more? That wouldn't be fair to them..." And I cried & cried because there was not any answer that seemed to be the correct answer.

How the heck can anyone go from that, to being happy.

The reality of fragile x is an ongoing mourning process & it is not easy. But there are people on the same, or very similar journey.  


As one friend reiterated, last night at the welcome reception we were reminded we all have a choice:
"we can focus on our kids' disabilities and the things they can't or will never do OR we can focus on the amazing things they can do and celebrate all their abilities. It's a choice we all get to make even though living with fragile X isn't a choice we would have made for ourselves. If you choose to live a glass half full life there are joys to be found and this conference, being around the people who walk in your shoes, is one of those joys.

If we look bafflingly happy it's because we are living that "half-full glass" life and enjoying the beautiful moments of feeling completely and fully understood and loved by the people we are sharing this time with.

It takes time to get here, it takes WORK to get here and some days are STILL "glass half-empty" days...heck, I have "the glass is shattered" days despite the time and work...but these are the people who pick me up, dust me off and refill my glass 

So, heck yeah, I'm happy here...I'm enjoying the people, feeling loved and refilling my glass for the times ahead.


I'll drink to that. 

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To learn more about fragile x, the conference, & the mission of the NFXF, visit The National Fragile X Foundation
To support the NFXF during Awareness Month, or to simply view or share Hayden's annual LEK page, please click HERE

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