Sunny With A Chance of 2013 Review!

Hello dear Chickens! It's getting to be the very  end of the year and I've been reflecting on this crazy whirlwind that was 2013. So here is my 2013 in Review:

January: We left MI after visiting our families on New Year's day. I got approved for my back surgery on Jan. 4th (which was HUGE). Colonel turned 3 on 1/14 (I can't believe he's almost 4, WHAT?!). We went to Las Vegas to visit our pals at Dog is God in Reverse before they moved to Alaska and had a mini 10 year reunion with her and our pal Trevor (Chemics!). Watched the SAG awards and loved them as always. Fell in love with Kid President and his amazing motivational talks. I went to The Ellen Show, ended there was no room for us, sigh.

February: I walked a Color Run 5k with my Second City peeps and it was AMAZING. I want to do another one. I met Keith Coogan with my pal Heather (who had the BIGGEST childhood crush on him ever), he's SUPER nice! The Shakespeare nerd that I am got super excited about Richard III being found. I got sick, boo! My surgery got moved back (boo) but only by a day (phew). The webseries 2 Hopeful Spinsters I was an actor in and did wardrobe for premiered with a season opener starring my pals and Michael Madsen! Joe and I celebrated SEVEN years together on 2/12/13. Colonel Mustard broke his ankle on that same day and I bawled my eyes out, I do not do well when my buddies are hurt. He then got a cast that he wore for quite a few weeks to heal, he also chewed himself out of those casts multiple times. I finished Conservatory 4 at The Second City Hollywood Training Center and had to take a break from moving on to Con 5 and graduating as I needed spinal surgery. I found out I had an enlarged thyroid and had to deal with that crap. I had an allergic reaction to amoxicillin and found out that I should never take that (or any penicillin) again so I don't die. I got a bit down and freaked out here.

March: I had a last hurrah before surgery and got to spend the night laughing with good pals who wished me well before surgery. I felt a mixed bag of emotions before surgery here and honestly felt like I was facing my own mortality. March 5th at 5am I went in to surgery. This day changed my life. I was so scared, Joe and I said goodbye just in case, I crawled naked onto a freezing surgery table, I woke up in bed with a huge scar down my front to Joe's face and beautiful flowers and well wishes from family and friends who are like family. I was fixed after 10 years of broken. It was a hard week in the hospital, really hard, but I started to heal. I went home on 3/9 and lived on pain meds for a bit. I got thrush from being in the hospital and cleared it up by oil pulling with coconut oil. My mom came out from MI to take care of me for a week and it was a great week of being super spoiled. Then Joe had spring break and took care of me for another week. Then my pal Benny came out from NYC (on tour with Beauty & the Best) and took care of me for 2 weeks. I was quite spoiled whilst healing up. I got a sweet handicap parking pass which really helped me a lot. We got our wedding photos back, they were gorgeous! I had a lovely Easter with pals and got to spend the day outside, even though I got a sunburn.

April: April is Autism Awareness month and it is very dear to me as my cousin has Autism. We celebrated Zebbie's 1 Year Gotcha Day, cannot believe how fast that flew and how it seems like we've had him forever. We celebrated the birth of Gwendolyn Everlast a.k.a. our pal Natalie. We also went down to San Diego and spent a weekend with our pal K Mac-Bakes. The Boston City Marathon bombing happened which broke my heart. Texas quake happened which also broke my heart. I bought Betty Goes Vegan and my stomach rejoiced. I saw End of the Rainbow starring Tracie Bennett and it was magic. Got a much needed tax refund-huzzah! We lost my cousin Ronnie which was really hard. Loads of states passed Gay Marriage Equality bills and I rejoiced.

May: We had a movie theatre premiere, red carpet and all, of 2 Hopeful Spinsters and it was AMAZING. Stars were there, Joe & I dressed up, it was our first big night out after my surgery. We celebrated our 4th Annual Vegan Beer Fest and it was MAGIC. I actually got in to The Ellen Show and it was awesome. I watched a lot of 90s Nickelodeon shows. Joe and I went to France and it was wonderful. I got super sick in Paris which was NOT wonderful. Turned out what we thought was food poisoning was our son, we panicked then rejoiced once my surgeon okayed us. Then we kept our secret until we were through the first trimester.

June: I was nauseated all month-ugh first trimester was ROUGH. Esther Williams died and my heart broke. Celebrated K Mac-Bakes bday, mys sister's bday, my Tacquito's graduation, struggled through the anniversary of my cousin's death, Father's Day, my pal Bridgey's bday, and Emily's bday. Laughed my butt off at BRF Syndrome. James Gandolfini passed away and my heart broke. Joe and I drove to Michigan (of course our car Rosalita broke down and had to be fixed but it was Firestone's fault). We had a wonderful time at home and I got to snuggle my nephew extra hard. We celebrated the retirement of my high school theatre's dream team.

July: We were still in Michigan for the start of July. Loads more cuddles with my little nephew. Mini reunion with some grade school chums that was pretty awesome. We picked our anniversary/reception spot. I met up with my pal that I had known since I was a little kid and hadn't seen in thirteen years & met her kiddos. We brought back my parents VCR & my childhood VHS collection. It was amazing. Zimmerman got away with murder and I felt sick in my soul. I fell in love with West Wing & Orange is the New Black. Dennis Farina passed away and I was heart broken. We announced our pregnancy publicly. The family I now babysit for and have known since college moved to L.A. I started swimming after a year long hiatus and it felt amazing. Signed up for my Conservatory 5 audition for Second City. Eileen Brennan passed away and my heart was sad.

August: Minnesota and Rhode Island joined those states who gave equal marriage rights to the LGBTQ community and my heart was happy. We found out that I am a carrier for Fragile X and my world came crashing down. I had an amniocentesis to determine if our baby would be born with disabilities, be a carrier like me, or be "normal". Those few weeks before the amnio and after were hell. The results came in here and I felt lost still. There were still so many decisions to make. Our car got towed and we shelled out $300+ for it, blerg! My first pregnant lady brain moment happened when I locked myself out of my locker with clothes and had to wander the gym in a bathing suit looking for Joe. We revealed we were having a baby boy here. The 2 Hopeful Spinsters webseries was apart of the Hollyshorts film festival. I felt the baby move for the first time on 8/23, that was crazy! News of Syria made my heart explode with sadness. I was accepted into the final level of Conservatory at Second City. My pal Monica visited and I got to see the Disney Animation Studios and my brain and heart were so happy I almost died.

September: We celebrated Labor Day with the rascals of Second City Hollywood and it was amazing. I hung with pals and watched Sharknado-it was crappy awesome. I bought my son his coming home outfit (it's this with Bill in blue). Joanna Garcia crushed my dreams of being Ariel on Once Upon A Time so now I hold out hope to be Merida (I have the hair). I let everyone know that being pregnant can be gross here. I wrote a letter to my son here and it's become my favorite post ever and I will give this to him when he is older. I went to my first Dodgers game and wore Tigers stuff cuz I love Detroit for life! My 2 pups were attacked by 2 other dogs and I almost beat the crap out of the dogs' owner for being useless and letting her dogs bite mine and not stopping them or getting them on their stupid leashes. I hate that lady. I graduated up to maternity swimsuits as my bump could no longer be tamed. I got the dreaded pregnancy cold that wouldn't die.

October: We were reunited with our college pal LaFawnduh and received an adorable baby gift from her. Joe and I went to Michigan to celebrate our one year anniversary of marriage. We had a blast and got to soak in some real fall weather, see lots of loved ones, make and eat delicious food, and party it up with pals and loved ones. See the pics here! We got held up in Chicago but made it back to L.A. after a lot of lameness. I hit the cankle phase of pregnancy where my ankles and calves swelled together to form one. My Tigers were kicking ass and taking names. My son received so much swag from all those who love us. Jimmy Leyland announced his retirement and I wept as he will always be my favorite crotchety Tiger. I finished my baby registry on amazon.com (find that right here). Marcia Wallace passed away and my childhood wept. We started our Prepared Childbirth Classes and loved our instructor. Lou Reed passed away, sadness again. I failed my first gestational diabetes test but passed the awful 3 hour one and then almost passed out. Joe and I went as hipster Ariel & Eric for Halloween with the kiddos I babysit and their folks, it was a blast!

November: The mentoring program for kids in less funded schools for writing put on their big show and I was so proud to be apart of it and of those kids' hard and amazing work! It was so special. :) The LAX shooting happened and I got so damn fed up with all the gun violence happening. My Spartans KILLED the Wolverwieners in football and my heart rejoiced. Spartan nation baby! My phone took a big crap and I have been struggling with it since as I can't upgrade until March. Same sex marriage became recognized in Illinois and my heart was happy. We received an amazing gifts of stroller/carseat combo from our pals Lizz & Sherm. I made a list of things to remember here. We hung out with our pals Bridget (came from NYC), Lizz & Sherm (came from San Fran), and Katie (here in L.A.) and it was epic. My son was measuring 4lbs. 6oz. already-BIG dude. My Pops and brother had birthdays and I was sad to miss them. My cousin Kate visited from Chicago and it was awesome. We found a crib we liked! Spartans continued to dominate in football. USC cut off dependent insurance screwing me and baby boy over big time and the hunt for new insurance began. We celebrated Friendsgiving with old pals and new & the kiddos I babysit for and it was a feast of food and good times. We got a storage unit to make way for baby stuff. I did a photo shoot with my cast for the opening of our show in January (check us out here on Facebook or on Twitter or on Instagram).

December: I turned 29 on December 1st and had my baby shower and it was an amazing day. I received an out-pouring of love from friends and family near and far and felt so special. I couldn't have asked for more. We decorated our apartment with our tree, stockings, wreath, etc. and I got into the holiday spirit. Joe turned 31 and I spoiled him rotten and he loved it. My grandma had a mini stroke and I didn't really talk about it to anyone publicly but it's been hard and my brother and my aunt have been keeping me in the loop and I am so grateful to them for all the help they're giving to her and my grandpa. She is now doing better and I am very grateful. I promoted the crap out of my show opening in January and continue to do so, have you visited the pages and liked us yet? You should, it would mean a lot to me. I wrote, produced, and am starring in this sucker. Please show your support! Nelson Mandela died and my soul broke, Madiba means so much to the world and to me. He is an inspiration for all. Paul Walker passed away and my 12 year old self wept. I was apart of this video parodying the Guinness commercial. I performed a lot of shows with my cast-mates of Me, My Selfie, and I (January 6th we open ay 7pm). I met Lily Tomlin and JoAnn Worley both of whom I love and did bits with me about my giant belly and son. The Spartans became Big 10 champs and are going to the Rose Bowl!!! We decorated the tree at our L.A. family's home and were once again awarded the best light crew award. We made a vegan french onion chip dip and my tummy did a happy dance. Second City had its holiday party and I saw so many of the people I love there and got to perform at Gradfest. I hit 9 months pregnant and my son is huge and just dropped causing my hips and pelvis to feel like they're breaking. My Zebbie pup turned 2! My nephew turned 1! We hosted an orphan Xmas and it was awesome and my cousin came down from Beale airforce base and we got to spend time with him and his wife and it was magic. Last night Joe and I went on our last big Date Night as just a couple with fur-babies. We went to Shojin vegan sushi and The Hunger Games Catching Fire. It was so lovely and a nice last big date together before little man arrives. Sometimes it's just nice to date your husband. Now we prep for tomorrow where we get to meet Coach Mark D'Antonio and Coach Tom Izzo-WHAT?!!! So excited!!!! Best Xmas present ever if I do say so myself. Then we spend a low-key New Year's Eve together.

So all in all 2013 was crazy. Major lows but some pretty great highs too.

And for 2014 here is my plan instead of resolutions:
Before Midnight On New Year's Eve: Write down the things you are DONE with in your life on a piece of paper and BURN IT. THEN: write all you want, desire, wish, dream of on another piece of paper. fold it and seal it in an envelope marked "TO BE OPENED NEW YEAR'S EVE 2014". Put it someplace that you'll remember...sock drawer, your Memory Box, diary, etc...When you open it next year, you'll be astonished at how many of those things came true! Happy New Year 2014!

I think this is a much better plan for me than setting resolutions that I forget about. Plus how fun will it be to read that list next year on New Year's Eve. As the year draws to a close I hope you all have a lovely New Year celebrations and that your 2014 is full of love, laughter, fun, and all the good things!

Take care dear Chickens & see you in 2014! :)

 

Sunny With A Chance of Catch Up

Sorry for the delay in posting. I needed some time & space away, to be in my real life for a bit and to sort through my emotional crazy ridiculous brain. So here is where I am.

I am doing better emotionally with all this. I am starting to feel a little less anxious & worried about the baby and trying to give myself the space I need to just feel this and analyze later. Therapy is helping loads, yes I'm in therapy and it's amazing. It's a safe space to say anything and feel anything and talk through it. I am so thankful for that outlet. I am still sorting through all the anger and sadness and feelings of loss, they're all still there and sometimes they hit hard. Mostly though I am starting to get excited about meeting our nugget in January. I am trying to sort through my feeling on more natural born kiddos in the future. I still don't know and that is okay. I am letting myself feel okay about not knowing because I really don't have a clue what I want to do. I am just trying to do the next right thing. I am using up all my improv skills in real life by just being in the moment, by listening (to others & myself), to saying yes when I can and running with it, and to not predetermine or pre-plan anything. I am just going with it. We shall see.

I also just want to thank those folks out there who have supported me & chatted with me about this a million times and still talk to me about it. I still am processing. I still need to discuss. I still need support and love and non-judgement and it feels good to talk to people. Those who are there in this Fragile X struggle as well, those who are important people in my life, and those who will listen without judgement no matter how well they know me or not. Thank you to all of you.

Thank you to the pals & relations who have already started our little collection of baby clothes/items too. Anna, Rebecca, Hep-you gals are awesome. Thank you! Cloth diapers, baby clothes, re-usable wipes, a baby bath-y'all are freaking amazing. Thank you. For serious.

On to the not-so-heavy stuff: I am back in improv class in my last level of the conservatory program at the prestigious Second City and I frigging love it. It is 3 hours every week where I get to play and be silly and am encouraged to explore a million characters and emotions and I LOVE IT. I needed it I think. It just feels safe and fun and silly and amazing. Plus my damn brain gets to shut down it's overdrive and just be present in the damn moment. That is so hard for me to do in life. Honestly my brain is like a computer with a buhjillion tabs all open and running at the same time or if you took every road in the United States and every car was a thought going all at the same time piled on top of each other. Class forces me to shut everything the hell up for 3 hours and just focus on the person or people I am playing on stage with. IT IS AMAZING. I love it. It is a sacred awesome space for me. Thank you class. Thank you Second City. For realsies.

I am sitting part time for some friends kiddos whom, I must confess, I adore. They're the best. I really love them. I love that 3 days a week I get to hang with these two kids. It's awesome. I love kids in general, their inquisitiveness, their perspective, their truths. It makes my whole day. I am also mentoring with an amazing non-profit organization called Young Storytellers here in L.A. We go to schools that don't have a lot of arts program funding and we mentor for an hour a week (for 9 weeks) the kids to write their own screenplay. Their words, characters, stories. These kids and this program is amazing. I'm only a week in and I am already so stoked. At the end of the process professional actors perform their scripts for their school & parents and the kids get the red carpet treatment. It's so encouraging and these 4th & 5th grade kids who started so shy at our last session by the end of the hour some were already starting to come out of their shells. I am so excited to be apart of this.

I feel like class & working with all these kiddos is helping a lot too with the easing of my heavy heart. It gives me something else to focus on for a bit, it makes me feel like I'm creating and helping foster so many great things in the world. It makes me feel a little less "woe is me" and selfish and a little more "what can I do to better the world a bit?" even if it's just making someone laugh for a few minutes. Helping lighten someone else's load with laughs, or encouraging kids to write or find their voice, or helping kiddos to learn through play-that helps me. More than I can say. So I am very thankful for these things in m life right now.

I am also thankful to Joe. He is just my home and safe place. He is so excited about our baby and being a dad, he just loves me and this baby so much, he makes it all feel okay. I just know he'll be there and that's what I need. He's my MoneyPenny and I love him. I could never be the James Bond I need to be without his support (even if he thinks he's the James Bond-silly doodle). I love that nerd, so damn much.

So that's it for now. I'll post the gender reveal pics tomorrow. It was a fun shoot! Hope you're all well dear chickens!


 

Partly Sunny With a Chance of Hopeful Weepies

I found this the other day. It made me stop because it is kind of like this, finding out I'm a carrier for Fragile X was like expecting to have a certain life, expecting a certain type of pregnancy, expecting certain kinds of kids and finding out I am somewhere else altogether. Not somewhere bad or horrible but somewhere VERY different than what I had planned or expected. So it is a loss. It might also be a gain and a purpose. My friend Dionna told me that maybe this would be my calling after I process my own feelings about this [she suggested this after hearing me rant and rave about how mad as hell I am that we don't know very much as a populous about Fragile X and that not every state automatically tests for this like it does for other things like Cystic Fibrosis, Muscular Dystrophy, and Down's Syndrome]. Maybe she's right. For now though, this explains my head and heart pretty well.

"WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."




Thanks to the archives at our-kids.org for this poem. It helped, a lot.



 

Cloudy With a Chance of Crazy Train

I got a call Friday morning that woke me up from sleep. It was my genetic counselor calling to tell me the preliminary results from my amniocentesis. She told me that our baby inherited my carrier X chromosome, that the mutation only went up by one repeat though (I have 58 repeats and our baby has 59 repeats). She said that it was good news, not the best but good news. She warned that as a carrier there comes risks & issues. Females carriers have a 20% chance of premature ovarian failure over the age of thirty (this includes me by the way, I could have premature ovarian failure). That in males they definitely pass on this X chromosome to their daughters which means grandchildren could be carriers or have a full mutation. In both males & females over the age of fifty there are increased chances of tremors, seizures, short-term memory loss, and early onset dementia. These are not the things you want to hear or think about. To say I had mixed feelings is an understatement.

 I felt a rush of relief. I felt a rush of fear. I felt a rush of gratitude and anger and sadness and elation and everything else under the sun. This was good news, not the best though. Not the best. Risks and issues. There's an increased chance in carriers for anxiety and depression. I think the reason I'm double jointed and hyperextensive in all my joints is being a carrier. Bigger forehead and ears that stick out, I've got those too. Are they FXS related as a carrier? I don't know. I was told that sooner rather than later I need to decide if I want to have more kids, as my ovaries can stop working. Not I've run out of eggs as in menopause style but that they literally shut down and so I lose all those potential eggs I have already.

It's really hard to talk to people about this too. Everyone immediately says things like "this is great, the baby will be perfect, you have nothing to worry about now" or "try not to think about all that, that's in the future, there could be loads of medicine and a cure by then" or "you don't have to decide right now about kids, everyone says how hard pregnancy is but once that little baby gets here it will all be worth it, you'll want more I know it". To all these things I want to scream "SHUT UP! YOU DON'T KNOW WHAT YOU'RE TALKING ABOUT!" and I know how harsh that sounds. I want to acknowledge how lovely and supportive people are being, they truly are and my heart is SO grateful beyond words for it. But, there is also a difference between the best and good news, there's a difference between silly worries and legitimate medical fact worries, there is a difference between a "normal" pregnancy and mine, and I DO have to decide soon, and I do need to talk about it now, and I can't wait and not think of it until later because there may not be a later for me and my ovaries. That is where I feel so frustrated. IT IS DIFFERENT.

And I get so angry. So damned angry when someone tells me not to feel how I feel. I am justified in feeling every way I feel because I feel it. That's the only reason I need. I would never tell anyone not to feel any way about any thing because if you're feeling it, you're feeling it for a reason and whatever the reason you're justified in it damn it. Don't tell me how to feel or think. Don't tell me not to worry or discuss. Don't tell me this is like what every other parent feels, it's not. Yes, having my boobs shoot up to a cup size of G at only 4 months sucks, having areolas the size of silver dollars is gross, having a constant discharge in my pants is disgusting, the acne ALL over my body repulses even me, and my nails and hair aren't growing better, and I cry and am angry all the time and feel insane. Yes, all of those things suck, a lot. Pregnant ladies are awesome for going through what they go through. But, and I may sound like a jerk here, BUT all that shit doesn't fucking matter to me anymore because this is SO MUCH BIGGER. So much more. And it's overwhelming. There's still loads to think about, to decide, there's still issues and risks that may pop up, there is still just so much.

Plus, and even worse for a pressure-producer like me, every decision feels like it's on this immediate timeline and then I pressure myself internally to make it faster and these are not fast decisions people. I know I should breathe and enjoy this pregnancy and wait until the baby is born BUT I also have to think about if I want to go through this hell again. Can I feel this way again to have a natural child? Can I handle an amnio again? Can I handle all the testing and waiting again? Can I handle the stress and the not knowing? Am I ready to give up having more natural children and just adopt? We wanted to adopt anyway and have a big mixed family but is this the better option for us now, just adopt? Should we try to save up $35k+ for IVF & PGD testing to guarantee embryos with my good X? Do we get an egg donor? WHAT DO WE DO?! Decide sooner rather than later, oh by the way it starts at 30, you'll be 29 when you deliver so you should know pretty much by then. AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!

I know that a lot of this is internal pressure. I have always put a lot of pressure on myself. I am trying not to do that. I really, really am. I also recognize though that I need to precess this. I NEED TO. I am trying to process all of the stuff that comes with me, myself being a carrier. The stuff that possibly comes with my body, my ovaries, my future mental capacities, my future physical capacities, my possibilities of future children, who I am physically and mentally today and are they related to being a carrier, all of that. Realizing that things I considered as "guarantees" in my life aren't anymore. I am also trying to process for the child within me all of the stuff that comes with the fact that they are carriers. Their future mental capacities, their future physical capacities, their possibilities of future children, who they will be physically and mentally and will they related to being a carrier, all of that. I am also trying to decide and process for the possibility of other future natural born children I may have. It.is.a.lot. A lot, a lot. I'm trying to give myself time and patience and love and reminding myself to be grateful.

But also I am pissed off. I am sad. I am mad. I am enraged. I am fed up with the medical industry. This is the MOST COMMON form of genetic disability and no one knows about it. 1 in 260 women are carriers and 1 in 800 men are carriers and no one knows about it. There are clinics and support groups across the nation (and world actually) and no one knows about it. It's more common than childhood diabetes (About 1 in every 400 children and adolescents has diabetes [http://www.diabetes.org/diabetes-basics/diabetes-statistics/]) and no one knows about it. It's almost as common as muscular dystrophy and cystic fibrosis and yet NO ONE KNOWS ABOUT IT.  I'm not making this up. It's all over the place it's just not talked about like CF or MD or Autism or Down's Syndrome. And I don't know why that is. I really don't. I read the following things like this and this and even this and have to wonder-HOW ARE WE NOT INFORMED AS A PUBLIC ABOUT THIS?! Why is this so unknown, misdiagnosed, etc. when it is the most common genetic cause of disabilities? I get really angry about it. I really do. I know that I am a bit skewed in my view of the industry that is medicine anyway after my ten year spine battle but it should not be this much of a fight over common issues. I found out the state of Michigan (where I am originally from) doesn't test for this like it does with CF, MD, Down's automatically when maternal blood panels are done. Oh and if you ask to be test it's $1500 to test for FX unless you can convince your insurance to cover it. WHAT?! That is disgraceful, it is just as common as the other issues yet it is not being tested for. Please believe it isn't just good ol' MI either, this happens in MOST states in this country. Yep, most states DO NOT test for Fragile X unless the parent specifically asks for it. I call a mega-hardcore BULLSHIT on that U.S.A. That is totally idiotic. No other way to put it. Again, the most common genetic cause of disability is not being tested for in a pregnant woman's blood panels. Riddle me this, WHY?! There is no answer. Literally none. I've been asking.

My own OB (whom I adore) who has been an OB/GYN for 20+ years had no clue about this because it is not talked about. She has taken it upon herself to get cozy with my genetic counselor and learn as much as she can and has been SO supportive (she even called us whilst she was on her vacation to check on us) but she still had no idea about this. WHAT?! Medical Industry: I am calling you out son. You and I are going head to head here buddy. You suck. You are not doing your collective job to care for and inform and treat patients. Most people don't find out they're even a carrier until their child/children is/are diagnosed with a full mutation and have Fragile X Syndrome. That is not okay. For once, I want the people in charge (Surgeon General, FDA, all of the agencies/groups/people in charge) to be folks like me who have had some sort of medical issue they have had to fight over and advocate about to make the decisions. I'm sorry unless you've been in hospitals, working with doctors, calling insurance companies, fighting with billing, etc. you don't know what it really means to deal with the industry that is medicine. It is an industry. It is a straight up business which unfortunately does not have the patients interests at heart. So many lovely doctors and nurses and professionals do have our interests at heart but the industry in general does not. I'm frustrated and angry about it.

It is a lot. I know the hormones don't help, I know that there is a little bit of time, I know most everyone who is talking to me supports (and usually loves) me but I also feel torn, sad, angry, happy, excited, and frightened. Anyone who tells me not to has a death wish. I'm crazy hormonal enough that I could snap one day in these next months, it could happen. Don't get me wrong I am still enjoying what I can, laughing when I can, loving when I can and that is pretty often. I am, however, also in turmoil. These thoughts/feelings/fears/risks/issues are on the front burner and not the back and I can't move them back there. I just want to talk to people who really get it and for those who've not been here to think before they speak and to tread lightly. I found the FXS group that is on Facebook that is the National and International go to board, they have helped a lot. I just need someone in real life I think. I might reach out to the support group here in Los Angeles that fragilex.org lists. It's worth a shot. Right now I am very overwhelmed with feelings and thoughts and just want to chat with someone who is also here or been here.

Blerg. So that's what is going on here. Crazy train party of one. Well I guess two, poor baby is on the ride as well. We did find out what gender the baby is so I'm trying to set up a photo shoot, calling all Los Angeles photographers who won't kill my pocketbook, wanna shoot our crazy little family with some colored balloons outside? Yay or Nay? C'mon crazy is fun, right? Even I can't fool myself with that one. Oh well.

Hope all is well with you and your dear chickens! :)