It's all about Control

What, exactly, can you control? What you wear? Where you go? With whom you speak?

Growing up I had a good friend who wore very normal clothing in a very normal way... anytime she 'branched out' her mom would say "That looks like something Amy Maslan would wear"... and you can bet your sweet booty that her momma was NOT giving her a compliment.

My first phrase was 'I do!'... my way of telling my parents, brother, the neighbor or anyone in shouting distance that I would do it myself, and I would do it MY WAY! That came through in my clothing, in my choice of activities, in the books that I read (don't be thinking I was some wild and crazy rebel... bookworm is more like it, a nice, polite, bookworm)

I know a young man who wears shorts year round- come rain, sleet, snow, or hail, he has shorts on. I know a young lady whom I have NEVER seen without a completely 'done' face, including her beautiful false lashes that I adore and coveted and never would have guessed were faux until I saw her pull one strip right off in a meeting... I about fell off my chair!

These are our public 'faces', our online personas, the 'us' that we put out there for everyone to see... do I post the pictures that show my lumps and bumps and pudge? HECCCCCKKKKKK NO! Nor do I post when we've had an awful FX night- spitting and biting and fussing, not eating and surely not sleeping. What about days when something brings me down, when I'm sad and blue and filled with worry... my mental lumps and bumps and pudge spilling out all over my real life.

Look back at the first sentence- Your occupation might dictate what you wear, and speaking of gainful employment, that surely dictates where you go and when you get there and whom you speak to while you're there. Not saying you can't change jobs, move, and so on... but what can you change RIGHT NOW?

As a parent, I am WELL aware that my attitude, my state (calm, frantic, peaceful or frazzled) has a significant impact on my children's personality and mood. Same thing at work- When I am cheerful, in control and relaxed my patients and their family members pick up on my vibes and, hopefully/usually/eventually, we all move forward in a calm effective manner. I can't control how others treat me... and sometimes it's really, really hard not to pop off an obnoxious rejoinder or to jump on the stressed out train that carries many passengers and runs fast and furious in every medical setting I've ever worked.

I am working on that inner locus of control- the one that says 'Right now, I'm in charge of me... and my life is a reflection of the choices I'm making'. I can't change the past. I can't change my chromosomes, my DNA and the mutation that I carry that caused my sweet big boy's FX, but I can most surely work every day to ensure that his FX does not define him, does not define our family, and that the guilt and worry do not define me. I am in control of my attitude and how I react to the hugging, smiling, milestone accomplishments that he makes is just as important as how I react to the spitting, biting, fussing. Just as with my middle B and baby A, how I react to the boundary testing that 4 year olds do, the 'must have momma' drama that consumes many of my 1 year olds waking moments, and the sweet cuddles and amazing leaps that are being made, it all gets wrapped up into this crazy thing that is 'our life'.

My style is affected by my attitude... When I'm feeling bogged down by negative thoughts and emotions, I wear something safe... something that no one will notice- for good or for bad. When I'm feeling self assured and peaceful I'm more likely to branch out... I don't care so much if other's like my style because it's a choice that I have made that makes me happy (or a learning experience, either one).

So, ramble coming to a conclusion, focus on what you are in charge of- your attitude, your inner state, your locus of control. Decide how you want your life to be, then go after it. Don't worry if someone (or their momma) doesn't like how you look. Be at peace, be you.

Dressed for Hope

So what do you wear when you’re going for Hope? Do you dress up- to convey confidence, purpose and assuredness that Hope and Science will collaborate and that all will be well? Do you go casual-secure that Hope knows your heart, and Science has done it’s due diligence, and no special outer trappings are necessary?

Tomorrow is a big day for us. My big kid A begins the STX209 study at Rush University… we have 2, count em, 2!! blood draws. 2 times that we will have to hold our sweet son still so that a teaspoon or so of blood can be siphoned carefully out of his big little body and analyzed. Sweet A will have a physical, B and I will have questions to answer, forms to fill out… and then, the unknown.

Unknown to us, unknown to the amazing DR. EBK… will we get a placebo or the real deal?

Double blind placebo studies are fantastic… unless your a patient in the study who has HOPE, serious Hope for this scientific endeavor. Personal, tender Hope held close to your heart, Hope that this will help your baby be more himself, less hampered by the lack of protein caused by the mutation on his X chromosome. The mutation that you, his momma, unknowingly passed on to him.

The amazing, fantastic, blow my mind part of this situation is that after the 6 week study, we automatically qualify for the extension period- meaning, whether we had the placebo or the actual drug, after 6 weeks we get to take the real medication- the real deal- and see if it helps our A or not.

We can handle 6 more weeks- Hope is patient…and Hope is strong… and Hope stands on the shoulders of Love. And Love knows that whether the real deal works for us or not, sweet A is our amazing son… and no matter what, he always will be.

Why write? Why style? Why deals?

We have pictures from when I was a little girl… a fancy slip serves as my ‘dress’, i have on a castoff pair of my mom’s high heels, a fab-u-lous bag from a garage sale ( i think) and a beautiful white lampshade on my head. And? and a HUGE smile on my face… I totally rocked that look.

I can’t remember a time that i didn’t like to think about clothes, to mix and match and play dress up.To create outfits that made me *feel* a certain way… that enabled my imagination to take me one step closer to whatever I was focused on doing, whomever I was focused on being.

We have another picture I can vividly recall- my brother and I sitting in a cardboard box- swim goggles and winter hats with ear flaps on, scarves tied jauntily around our necks… obviously :-) we were pilots. There’s one when I was 12- my first leather jacket, the beautiful (eek!) brown suede with the ribbed cuffs… I have my hair brushed to a shine, my eyebrows slicked into place with vaseline, and this time a half (mysterious?) smile as I worked hard to project that ’ I know ALL about… um… whatever it is that you teenagers know ALLLLL about’ kind of look.

This might have led me to a blog like this… but I think I probably know why, NOW, I’m writing about shopping, writing about style, writing about bargains and deals and cheap thrills.

I have an amazing son with Fragile X Syndrome. When my sweet big boy A was born, we didn’t sleep…. I mean REALLY didn’t sleep- no more than 18 minutes at a time before he would wake and have to be soothed/rocked/nursed back to sleep. As he aged I started to notice other things that were different about my babe, and by his 6 week appointment I had started asking my doctor questions about his development. By 6 months we were in the Early Intervention System, by 8 months he was receiving PT, OT, ST and DT. By 14 months we had seen a Developmental Pediatrician, a Pediatric Ophthalmologist, a Pediatric Neurologist, a Geneticist, an Audiologist, an Otolaryngologist, a Pediatric Cardiologist, and Radiologists for MRIs.

I might not have been able to help A crawl, but I could make sure he had the cutest outfit in the world. I might not have been able to help him talk, but maybe, just maybe this toy would catch his attention and spur those elusive sounds out of his sweet mouth.

By the time we received A’s FX diagnosis, we were 4 months pregnant with our second child.. so we had an amnio and waited, and waited, and waited- because FX is a hereditary genetic syndrome, and our unborn baby had a 50/50 chance of receiving my affected X, a 50/50 chance of having FX.

I can’t really tell you my exact mental state at this point in my life… I was tired, exhausted really, and filled with worry. I wouldn’t cry in front of my family, so I cried in the car, I cried in the bedroom as I put our laundry away. I cried in the shower. I wouldn’t call my friends because I didn’t want to have to answer questions about my sweet son or unborn babe… I was in a pretty rotten place. I don’t know if anyone other than my husband, mom, or dad knew how i was feeling… I smiled and laughed out in public, we went to football games and basketball games and baseball games ( a *perk* of being married to the A.D. ) We took our dog for walks… long, long walks.

Finally, after what felt like YEARS, we received the news that we were having another son and that he had received my unaffected X. Relief, joy, hope. Slowly, slowly through the years… I got my happy back. Clothes, style, the thrill of a bargain- they make me happy.

Every day, EVERY DAY, we have struggles with FX. Every day, EVERY SINGLE DAY, my work involves people who have suffered from traumatic brain injuries, who are fighting cancer, recovering from strokes, battling dementia. These issues are real, and heavy, and take serious work. Style, clothing and deals? That’s my down time, my break from reality, my escape.

So if you’re still reading, thank you :-) I don’t judge others on their style or clothes- many of those I love the most wold be hard pressed to tell you the last time they REALLY concerned themselves with the trivial business of what they put on their body. Your soul, your heart, your mind, your personality- that’s heavy. your clothes? that’s light… very, very light.