Wednesday, January 19, 2011

Happy BLEEPIN’ New Year

Well here we are …. 2011…. Another decade. Another calendar. Another chance to get it right….So many things have happened in 2010 that it boggles the mind how we fit it all in. But we managed and we all came out of it breathing and with a pulse. And as much as I gripe and bemoan about life here with this crazy bunch, I wouldn't change it for the world. TJ, Cody and TylerLee are all managing to delve into the mires of teen angst while remaining honor roll students.  TJ played football for the FIRST time and jumped right onto the same team with kids that have been playing since they were in utero. And he only broke a few fingers! SCORE!  TJ is in there, somewhere, I swear!Cody has managed to simultaneously entertain and piss his teachers off all while being their best student and getting straight As. At home he spends his waking hours playing Madden11 and hoarding about 57% of our kitchen plates, cups and silverware under his bed. TylerLee….. well, lets just say TylerLee is a learning experience for both Joe and I… she is the first girl in our family. And we are finding the process to be somewhat…. taxing on us emotionally. The animal kingdom just may have it right where as some species eat their young. Her teen years will be a testament to that, Im sure. But to be fair, TylerLee never gives us any problems other than just the sibling rivalry and expected moodiness. She gets straight A’s, all her teachers adore her. She has a heart of gold and the entire month that I spent in the hospital she ran this house. She is so very mature and responsible at such a young age. She leads a quiet, modest life in this loud, insane house.She is almost ALL her father, thankfully and minimal of her mother.  Kylie… what can we say about Kylie. Great grades, bad eyes, great attitude, bad ears, its a balancing act with her. She keeps us on our toes. As far as filming an episode of Mystery Diagnosis, she was a freakin champ. the “hero shot” for the ending gives me chills every time i think of it. She is a testament to the saying “If He brings me to it, He will bring me thru it”.  Yeah, I know I'm gorgeous!The information gathering process for the show was a lot more emotional for me then i expected it to be. I'm still in awe.. At all of us. How the hell did we manage to survive those first few years? I guess we did it on auto pilot. because if we stopped to think about it we never would have made it. And I appreciate Joe and the kids for allowing the process to invade our life this fall. I am indebted to them as most of them said “NO WAY!” when I told them we were asked to do it. But when I explained that my goal was three fold, they understood and agreed. (well..TJ never did but he knew it was that or a life time of no rides to the girlfriends house) A. I wanted to bring exposure to this orphaned disease that most Dr.s only came across once or twice in their education and careers. We need support, we need research. We need a cure. And to get that, we need to expose it for all it does to our families. Our lives. Our children. B. I wanted families with DBA to see Kylies journey. Her obstacles, her struggle. And see her success. To know its possible to live a happy, abundantly blessed life as a child and family that carries the letters DBA sewn into their hearts…If we can do it, so can they! C. and the most important, to me…I hope that a Dr., a neighbor, a parent, a spouse sees this story and says “Oh my God! That is what my child/spouse/loved one  has! It has a name! there are Drs who specialize in it! WE ARE NOT ALONE!” If just one family gets their mystery diagnosed because of her story, then it was ALLLLL worth it.  Next up, Ryan….oh brother love… He has  ::Draft-saved 12/31/2010 12:25 PM ::

And this is where the end of 2010 and  beginning of 2011 smashed into each other like a 12 year old crashing and burning on a sled at a high rate of speed. In fact… that's exactly what happened.  you can almost hear the bone snapping ... That was where my journaling got cut off by the ringing of my phone and within a half hour I was in the ER with TylerLee getting x-rays on her ever swelling, almost pretty shade of purple, hand, By 4pm Joe was tearing about town shopping for last minute items and then home, furiously preparing the house and food and all its fixins for our annual bash while I brought home the casted and exhausted and temporarily nicknamed “the broken child”, TylerLee. And if we knew that New Years Eves activities are a mere hint of what the entire month of January was going to look like for us, Joe and I would have packed our bags and hitchhiked to Cuba before Snookie had a chance to roll out of her bedazzled New Years ball and right into oncoming traffic. Forget the fact that its illegal for Americans to visit Cuba or that neither one of us has a passport, because we are fully prepared to take up sanctuary at Guantanamo Bay as opposed to the war zone infirmary that this house has become in the last 19 days.

Less than three weeks into 2011 and we have had the “broken child” surgically repaired, out of state. TylerLee, Kylie and Jordyn are being evaluated for PVC’s (a cardiac rhythm irregularity that can require catheterization and ablation ), two are hooked up like hybrid cars to 30 day cardiac event monitors, two are scheduled for stress tests, Hes smiling on the outside, but on the inside he is already plotting his revenge...Charlie had to be doped up and have his two front teeth manually yet gently yanked from his head thanks to an abscess, Joes had skin biopsies that received positive results on the kind of tests no one wants positives on, so come February he will undergo a series of Mohs surgeries and have a trial with some chemotherapy cream in hopes of avoiding more invasive treatments. And then there's, me… and that mythical. magical omentum. As much as I have read up on it, I am chagrined to admit I still have no friggin clue what it is, what it does, or what were gonna do with mine. As the days pass, I look at the shifting, lumpy, globular “thing” that has replaced what used to be my belly button and think of “The Blob”.  It doesn't actually look like the blob, but say there was a “Littlest Pet Shop” pet blob. THATS what it would look like. Small, seemingly harmless, squishes when you poke it. Its my very own “Littlest Pet Blob”. Just ask Ryan and Kylie.. I let them poke it, Kylie nearly puked, Ryan thought it was the most awesome thing EVER! All that and its only the 19th of January. It cannot be any wonder why I choose to write the date as 20he11 every given chance, can it?

I have two theories on the cause of our current state of affairs thus far… Either A,) God is filling our “challenges to be met” quota early on as to leave the rest of the year free for unhindered joys and abundant blessings, or B.) The Myans really botched up their calendar and the rapture is upon us… JUST US! Either or are entirely possible, at the moment, its a crap shoot.HAPPY BLEEPIN NEW YEAR!!!!

So, yeah… sorry my New Years update was about 3 weeks late, Sorry I never followed my thought process, to round up each childs year of successes and escapades in a few sentences, All laced with love and laughter, entwined in the chaos that is us Monica's and wrapped up nicely in a positive, uplifting cheer for to enjoy a happy new year. But alas, it was not meant to be. So instead, I will take the reality of all of the things that 20he11 has brought to us thus far and wear them like badges of honor. I will carry them in my pockets like hall passes or Dr.s excuse notes. So when I get caught going batshit, or breaking down into a puddle of blathering omentum, I can pull out all my reasons and lie them on the table. Literally and metaphorically.

Lets just hope Nancy Grace has a good sense of humor when I'm her lead story,,,,,,

Live, love and laugh,  kids…. no matter what!