When Your RAWR Goes Silent: Part 2

This is the third of a series of guest posts by my friend Marie at All Things RAWR.  I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine.  I asked her to write on a couple other topics related to [Fragile X] carriers, as I mentioned this is the second in the series.  Read her first one here:  Grief:  The Silent RAWR., and the second part here:  When Your RAWR Goes Silent, Part 1   I hope you are all as inspired and touched by her words as I am.

I've been agonizing for days in my mind about what to say and share in this section because Depression is such a complicated beast. The best I can describe Depression, from my layperson's perspective, is that Depression is your body's physical and mental response to being out of balance and overwhelmed for too long.

So many reasons exist that can cause depression. I say "can cause" because one event might trigger depression at one point, but depression does not rebound when that same stressful event happens again. Some event that is a trigger for one person might not affect another in the slightest. Also consider that many factors play in to depression, from your physical health state, mental health state, community support, environment and more.

Part 2: Other Causes of Depression

Depression is your body's way of telling you that something isn't right, that you are not in balance. Very often, there was a significant change in your life that altered your path. You may find yourself feeling like you don't even know who you are anymore because life is so different from what it was or what you hoped it would be. When we feel so much pain, it manifests itself in our bodies. Physical symptoms start to show, and persist as depression.

Depression doesn't travel alone either. It finds friends with grief, guilt, anger, resentment, hopelessness and negativity in general. As a crew, they are soul crushing, life sucking, terrible awful feelings to have. Then realizing you're having them just intensifies it all.

It's a vicious cycle. It's a cycle that can be broken, but it takes work, commitment, hope and love. Love can conquer all. Recognizing and acknowledging the cause of your depression is the first step to understanding it, yourself and your solution for relief.

A few of the more common causes:

-- Illness or injury, in yourself or family, can cause depression in those it touches. Life IS different, things have changed. Often family and relationship roles get blurry lines or changed entirely. You may feel grief for the life you thought you would have, then guilt for wishing for that life again. If your new role is much different from what society says your role should be, you may feel added pressure from the community to 'fit in' again. You may feel a stigma of being 

The loss of a loved rex can cause a depression to the depths of one's soul. Grief plus depression can be a deadly combination because it is so crushing. Whether the loss was obvious and eminent or entirely unexpected doesn't lessen the grief of the survivors. You will grieve for the life had and lost, or never touched. Holidays, big events and special occasions will be twanged with sadness at the soul not there in the flesh. Anger and resentment may flare up as life moves on for others

Moving and Divorce are huge life changing events that affect interpersonal relationships, environments and ultimately, physical and mental health. If you didn't grow up with a lot of change, recognizing that big changes may cause anxiety can help you find ways to reduce your levels of anxiety. What are you most nervous about?  When kids are involved, it's important to be respectful of their experience. Making new friends, losing old friends and starting over is really hard and has lasting consequences. Make a point to seek out tools to help them adapt.

Becoming a Preggosaurus Rex or Mama Rex, the whole process of pregnancy and motherhood is exhausting, taxing on our bodies and supremely stressful. You're growing a whole new brain and developing new circuits. You now have your heart running around outside of your body, exposed to the world, the elements and bad stuff. Having kids is stressful, trying and although rewarding (so I've been told), often overwhelming.

Un-diagnosed health issues can also lead to depression. A worrisome reason for developing depression because you might not even realize something is wrong until you're already experiencing depression symptoms. Those same symptoms may also mask what is really going on, such as cancer, heart disease and thyroid issues. So if you haven't experienced a big life change, get plenty of sunshine, and still feel BLAH, it's time for a check-up with your doctor.

***Author's note: having a thorough education in Interior Design, I firmly believe disability is a problem with the environment and NOT with the person.   A "disabled" person in a supportive environment can be enabled to succeed

If you recognize yourself in any of the above, please contact a professional for medical or mental health support. Finding someone to talk to and getting evaluated by your doctor are two easy steps on the path to bringing yourself into balance and wellness.

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When Your RAWR Goes Silent: Part 1

This is the second of a series of guest posts by my friend Marie at All Things RAWR.  I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine.  I asked her to write on a couple other topics related to [Fragile X] carriers, as I mentioned this is the second in the series.  Read her first one here:  Grief:  The Silent RAWR.  I hope you are all as inspired and touched by her words as I am.


A slight rustling in the grass as just a few blades shift, sounding like the wind. Without noise, without fanfare, it slithers into your midst unbeknownst to you. Slowly it winds around you, surrounding you with the cloak of normalcy. Then it starts to squeeze. With growing force, it closes in on your world, it's grip starts to tighten. It's presence clouds your mind and darkens your heart. Slowly, like a constant leaking drip, it leaches your passion and motivation. It smothers your love. It fills your perspective with tears and hisses at positive thoughts. Slowly strangling your happiness, the snake of depression takes over your life, squeezing out the 'real' you. Quietly, depression strangles your RAWR into silence.

Depression is a complicated and fickle creature. Moving into your consciousness with the stealth of a snake, depression can quickly devour and consume a seemingly healthy, happy person. What makes it harder to catch and eradicate is that depression can come at you from many directions.

Part 1: The physical snake : Lack of sunshine

My first bout with depression was the year my family moved to Fairbanks, Alaska. I was 7 and had spent my entire life in sunny states when the military called us to the great white North. We arrived in the summer during the long days when the sun barely drops below the horizon. With amazing speed, the sun disappeared, plunging us into perpetual darkness. It wasn't long before my little self felt the effects of no sun. My emotional stability turned into quicksand. I slept more than usual. I also learned the bad habit of emotional eating to feel better. At the time, the technology wasn't there to support Vitamin D deficiencies and what is now known as SAD. Recognizing the changes in all of us, my mom would diligently fill up spray bottles (yes, mine was magenta) with food colored water, bundle us up and send us outside to art up the yard until it got dark.

(Tip: do not fill spray water bottles with yellow water. You'll wonder forever which was the kids vs. the dog.)

Life without the sun is no joke. There are people on this earth who can tolerate it better, but only with the right diet and genetics. However, we all need sunshine to hit our eyeballs every day. The sun is a key component to the music of our DNA and controls many metabolic functions, including queing in our serotonin and melatonin. Without those cues to our system, our body won't function properly. We'll feel "off", more tired, more hungry, more irritable. That's the start. Too long without enough sunshine and we break down.

There are many therapies designed to help combat those effects and employed with great force in the darker regions of the world. Happy lights, tanning beds, vitamin D supplements, gyms and more are available to combat the lack of sunshine. One simple therapy shared by Deborah Burnett is to have a bright, blue kitchen that you spend time in every morning between 9-11am. The key here is the light bulbs should have a higher Kelvin temperature range and so their light is bluer/ whiter. Cool White is often a key to the higher spectrum.

My other favorite anti-dote is one my mom knew instinctively: exercise. Exercise releases serotonin, endorphins and other "feel good" hormones. When done at the right time of day (before 3pm), exercise can reduce the impact of depression. Breaking a sweat helps to release all of your internal "piss and vinegar" as Raul likes to say, not only boosting your body but also your mind.

If you recognize yourself in any of the above, we encourage you to speak with a health professional. There are many resources out there to help you cope with and overcome depression. Seasonal Affective Disorder and Vitamin D deficiencies exist and there are tools out there to help you.

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Grief: The Silent RAWR

I'm so excited to be sharing the first of a series of guest posts by my friend Marie at All Things RAWR.  I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine.  I asked her to write on a couple other topics related to [Fragile X] carriers, and she hit me with this first -- a post that quite literally brought me to tears.  I hope you are all as inspired and touched by her words as I am.

Grief. Loss. I am not a fan of those words for so many reasons, but they hold weight over us in a way that few other words are capable of. 

Searching for clovers and finding peace

Grief we feel, loss is what we almost had or had once upon a time. Beyond the letters themselves, there are few other words that can adequately describe to another human being what grief feels like. Wanting someone to understand grief without experiencing a loss is, in my humble opinion, darn near impossible. What is also striking is that the loss or reasons for grief can vary dramatically from person to person but the depth of pain, hurt and fear knows no bounds.

Whether you've lost a friend, a grandparent, a parent, a spouse, a child, a fur-baby or any other being or maybe even a job or the dream of a future, it hurts. It hurts a lot. It feels like your heart has literally been shattered into pieces, left in broken tatters. You wonder how you haven't died from a broken heart…yet. You wish you could go with them just so the pain will stop. You wish you could turn back time to when that future was possible. Each breath hurts. Each smile takes pain to crack. Some days you wonder how you will ever carry on. 

I say carry on because moving on is not possible. You will never forget, not for a day, rarely for a moment. Moving on, getting over it, letting it go, growing up, all of those mean words imply forgetting. You can't forget. Forgetting is not an option. Carrying on is. When you carry on, you carefully and compassionately pick up the pieces of your broken heart (oftentimes with help) and with a brave face, move into the next present moment. You carry your loss with you, in your heart. The scars on your heart make you stronger. If you allow it, the cracks in your heart let love sweep in and out like the ocean waves. 

Grief hits your insides like waves, sometimes a large wave tumbles over you when you least expect it. Sometimes you brace for impact only to find the wave barely crossing your toes. To lessen the waves of grief, there are things you can do. There are tools to help you find and pick up those broken heart pieces. 

When faced with a wall of grief and a shattered heart, it is time to mourn. Mourning is the work you do to process the grief. Mourning takes many outward forms: crying, writing, crafting, talking, sharing and so many more. Mourning is what saves us. 

You will mourn not only the past and the present but also the future. Honoring the future you thought you had by acknowledging the present you've been given requires a strength that feels impossible to summon at times, but is absolutely possible. 

If any of the above strikes a chord with your heart, I encourage you with all of mine and all of my RAWR to find a HEALTHY outlet for your grief. Many people turn to destructive behaviors which will only cause more pain and suffering. It takes strength to talk to a friend, go for a walk, cry, smile, write, sing, play, work, create, and mourn. 

Just when you think you can't go on, you can't possibly be strong enough to [insert mourning activity here], that is the moment to think of your loss. Feel the love you had for that person or dream. It is in that love that you will find the strength to carry on. 

I carry on. I am a survivor of grief. I mourn. I mourn on a daily basis. This post is my mourning. This post, and so many other moments of mourning are what saved me. What moments of mourning have or will save you? 

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Decisions - A Guest Post

I have the pleasure of being able to share another FX Carrier mom's story today.  She preferred to write it anonymously.  Many carriers have heard her story w/her name attached, but as this is a bit more public, she wanted her name withheld.  Here’s her story:

I hadn’t even known Fragile X existed until the day my son was tested for it at 19 months old.  I didn’t read too much about it that night on the internet because the geneticist’s comment had been “I don’t think he has Fragile X, but when someone is being considered for an autism diagnosis, we also test for Fragile X.”

When my son was just over 21 months old, we received a call confirming he had Fragile X Syndrome.  He had 1100 CGG repeats, which meant nothing to me then.  A few months later he received a dual diagnosis of autism.  And although we’ve come to accept how much he is affected by Fragile X and autism over the years, it was clear even early on that this was not a mild case on the spectrums of the two disorders.  He’s now 10 and is nonverbal, has off-the-chart sensory issues, is not completely toilet trained, can be aggressive and the negatives list could go on.  On the positive side, he is so darn cute, he gives great hugs and kisses, he has an awesome memory (when he wants to show it) and is often a joy to be around.  But life with him can be exhausting.

We had a glimpse of this exhaustion by the time he was 2.  Which is what helped my husband and I to agree on one thing:  we did not want another child with Fragile X.  We loved our son, but did not want to risk having another child as affected as our son. 

But we disagreed on how to expand our family, which was a problem:

He wanted us to do IVF-PGD (I am scared of needles and pain; that’s not a good mix!).

He would’ve also agreed to the option of getting pregnant naturally and testing (via CVS or amnio) and terminating the pregnancy if the child had received my Fragile X-affected X.  I couldn’t live with the termination part.  Please note:  I support others’ choice to use this method and see why they choose it, but I could not personally choose this route.  In the end, I went through early menopause and these first two options were naturally closed off to us.  This is exactly why some carriers considering the risks of FXPOI have their eggs harvested to keep all options open!

I have always been pro-adoption.  I think God planted that seed in my head years ago since he had the knowledge of my FX carrier status.  Unfortunately, I married someone who was not pro-adoption and at the time I thought it wouldn’t matter.  It did and at times it still hurts both of us that we only have one child.  Neither of us would’ve chosen this number to complete our family.

Which is why I feel so strongly about folks being tested at birth for Fragile X.  Everyone needs to know their Fragile X status EARLY and grow up knowing about it in an age-appropriate way. 

If parents learn their child has Fragile X Syndrome, they can help them get the best intervention as soon as possible, join support groups, attend conferences and learn much more to help the whole family!

If parents learn their child is a Fragile X carrier, they can watch for issues that may arise (some carriers have issues of their own, some actually have the same issues as someone with the full mutation or Fragile X Syndrome).

Parents can explain in small chunks as the child grows what this might mean for them so they won’t be blindsided later.  I’ve seen people in crisis who jump online and ask strangers for help with the bombshell that was dropped at age 18, age 21 or age 25 while they are pregnant:  the bombshell that they are a carrier or they have the risk of being a carrier.  It’s a lot to take in all at once at any age and I feel for these folks.  I’ve also seen some people who grow up knowing their FX status and it seems like a much more natural way to handle this, giving opportunities for the young person to process it over time.

If you grow up knowing you’re a carrier and learn to be comfortable with what that entails, it’ll naturally come up with the person you seriously date and/or plan to marry.  The two of you can digest options you have and come to terms with those options before marriage.  Living through the options still may be different and difficult later on, but at least you had the opportunity to discuss it early…  maybe choose to marry someone with similar opinions about the options. 

No matter what, it’s great to have information early and be able to gradually come to terms with it all in a more natural manner!

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Orchidometer

The following is a guest post by Mr Awesome, himself.  (Ayden's Daddy)

Orchidometer. It sounds like a tool the Ghostbusters use. In reality here is what an orchidometer looks like:

What are these specialty worry beads used for? I discovered the answer during the doctor's checkup of our oldest son.

First the doc pulls out a stethoscope, I'm familiar with that device, she listens to his heart. Thump thump. Next she pulls out a rubber mallet, still in the know there, she taps his knee and elbows. Whack, whack.

Then she jumps right in to it. "Can I check his testicles?"

"Uh, sure." I mean, she's a doctor right, that's one of the things they do. I've had the procedure done a few times; I'm an old pro at turn your head and cough. So we take off the little man's pants and she starts poking around at his assorted parts. Her gloved hands poke at his junk a little and then she prods his sack a couple of times.

She says, "Looks fine to me." Pants up, rubber gloves off, examination continues.

At the end of it, the doc, the wife and I take a seat at the table, the very small table. Why is it that everyone who works with children sits in those tiny chairs? I understand that it's a place for kids, but for the amount of money we pay in medical bills, buy a regular sized table, please.

There we are, the three of us hunched over this tiny tea-party table and the doctor is laying it out for us:

"This is normal. That is fine. This is normal. I'm a little concerned about this and that."

Then it happens. She pulls out the Orchidomter.

"This is how big your son's testicles are." She points to a round bead with number on it.

It takes a moment for this all to register. Various sized beads, each larger than the next with numbers on them. These aren't worry beads.

This is a ball measuring device. Immature smile creeps to my face.

"His testicles are this big, which is good." Push the giggle deep down.

"They could be this big." she displays a larger bead, cover the smile with my hand. I mean this is serious business.

"But if it were this big we might have a problem." she points to another bead which makes me question my own manhood.

"A lot of guys with this problem have enlarged testicles." Heh, she said testicle again.

"Medical stuff, medical stuff, testicle." She won't stop saying it. Showing us more, even larger beads. Stifle that chuckle.

"Serious medical stuff, more serious stuff, testicle." Damn it, I'm starting to laugh.

She shoots me a disapproving doctor look.

Uncomfortable laughter, "I'm sorry, I just, the beads, it's so..." I'm a twelve year old trapped in a thirty year old body.

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