Tuesday, December 27, 2011

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.

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