While Visions of Mothers Day (pee-pee)Danced (then took a shit) In My Head…

Ahhhh… Mothers Day…

     I remember the days of being all doe-eyed and oogie over a hideous breakfast in bed knowing full well the kitchen probably looks like a Third World Country. Gifts like tiny hand prints pressed into cement, so much cuter than the tiny handprints in ketchup on the walls. Mothers Day Tea parties with cucumber sandwiches and fancy paper hats made by dirty, sticky hands that I ate and wore with a smile on my face.

    

I ALSO remember thinking that when they are older, Mothers Day will be a fancy breakfast buffet with mimosas in crystal glasses and Eggs Benedict on fine china, served AND cleaned up by someone else. Gifts like a day at the spa and maybe a real cup of tea like Earl Grey, with lemon…and actually hot.

The reality is… acutely different.

My kids now range from almost 10 to 17. And right now, the only thing I want from them is this…

1. Flush the fucking toilet.

2. Pick up, un-ball and place into a laundry basket your crunchy, Frito smelling socks.

3. When you take your pants off.. don’t leave them inside out with your underware securely attached to them. They are 2 separate items. Take them off one at a time.

4. When you walk in the door and actually remember to take off your shoes, MOVE THEM FROM THE MIDDLE OF THE DOORWAY.

5. Stop putting half eaten bowls of cereal in the fridge. WTF? You will NEVER eat it later. Hell, the dogs won’t even eat it.

6. Penicillin has already been invented. Bring your plates and cups down from your room.

7. Keep track of your shit. IE: iphone/ipod chargers. Stop stealing mine.

8. When I hide something, I isn’t a game. You aren’t supposed to go looking for it. (like chargers…)

9. If you have a spider in your room, and are too fear struck to kill it yourself, get me or dad… we will help, judgment free. Stop lighting them on fire, insurance won’t cover that. Spraying them with Febreeze won’t work either and whacking them with a metal bat only leaves holes in the wall.

10. If you make a hole in the wall, fix it. But not with gum and candle wax.

11. Girls, I will happily share my makeup with you. But keep in mind it’s far too expensive to waste doing blind make up challenges, doggie makeovers or dressing Charlie in drag. Awesome as it may seem..please, refrain…

12. Boys, I will happily share my tools with you. But please put them back when you are done. I break a lot of shit and need them often…

13. Clear the browser when you use my computer… there are some things a mom doesn’t need to know.

14. Stop slamming doors. Every time you slam a door, an angel gets its wings chopped off… think about that!

However, if you are so inclined to actually do something for me on Mothers Day, my sweets, do something good for a Mom in need. Because, despite my bitching and complaining, I know how lucky I am to have Daddy and you guys and I am incredibly blessed to have all I could ever want or need.

 

 

This is Jorge… his nickname is Pooty…

and a container of Tang…

Get it?

God, I love my kids…..

Heroes vs. HEROES

In our house, there are heros and there are HEROES.

Everyone knows heroes..not everyone is lucky enough to know any HEROES.

· Batman “To the batcave, Robin!”

· Buzz Lightyear “To infinity! AND BEYOND!”

· Optimus Prime “Autobots. ROLL OUT!”

· GI Joe “Gooooooo Joes!”

· Spiderman “With great power comes great responsibility.”

All heroes, not a one a HERO…

When asked who their favorite hero is, my kids are keenly aware of the difference between the two.

Charlie puts it best “Real people HEROES, or like, made up, pretend heroes?”

Real people HEROES, Charlie. Actual people, who have changed the world in a positive way by their actions or beliefs.

And that’s brings us to the thoughts that weigh heavy on my mind this last week.

Our family has been deeply, directly affected by one of those “real people HEROES” and at 42 years young, Mark has left our earthly lives, to carry on his cape wearing heroics in heaven.

And I don’t know how to tell Kylie.

You see… he IS why she IS.

What is Worth Protecting More?

I am a conflicted American citizen. My husband is an expert marksman. He was a sharp shooter while in the Marines and served as the Firearms Instructor for his police department for 18 years. My brother is a responsible adult who finds enjoyment in target shooting, researching his guns and follows the rules that apply to our state when purchasing his weapons. My sister, brother-in-law and nephews all enjoy family time at the range. My nephew has received rifles as birthday presents, and my own daughter, while visiting them in Arizona, blew everyone’s minds with her natural skill at shooting. She had never before touched an actual gun, yet now holds the nickname of “Sniper Lee”.

However, I am the mom that loathes weapons. I have argued on MANY occasions with my husband about getting the kids anything gun related, from paintball guns to AirSoft guns to even water guns. I firmly believe that the casual nature of “first person shooter” games and the like, desensitize a young, easily influenced mind to the consequences of shooting an actual weapon and the repercussions that follow. You can show me all the scientific research to the contrary, but I feel how I feel. And nothing will change that.

I acknowledge our “right to bear arms” and know that our constitution dictates that we, as Americans should be able to protect ourselves and pursue the act of hunting, collecting and shooting guns as a healthy, responsible pastime. But how do we balance safety with rights? From what I have gathered, the damaged young soul who is responsible for Friday’s tragedy was psychologically challenged. He was most likely, on his own, never going to be able to legally own a gun based on his mental health. That’s great. But his mother legally purchased weapons. And he had access to them. Now what? How do we get around THAT? Should the mother, God rest her poor soul, have been denied the ability to own weapons because of the liability she posed? And that’s just the one of MANY layers of “what if’s” that mires this extraordinarily important issue in a seemingly never ending Catch 22.

I’m not arguing anyone’s side. I’m not educated as to the laws as they pertain to each and every state. Nor am I playing a shithouse lawyer. I’m simply trying to process this situation and figure out how I feel about “gun control” as a whole. I’m a mom trying to tell my kids they will be safe in a world that seems to be anything but.

As a resident of Toms River, NJ we recently dealt with the devastating SuperStorm Sandy. We had no power for two weeks. Our town was a war zone. Hell, our entire Coast.. and some places STILL are… Our property was damaged, flooded and essentially trashed. We watched, wrapped in each other’s arms, as trees fell like toothpicks on our neighbors houses leaving nothing but destruction in their wake. We were terrified for our lives as the storm hit. But nature has no laws. Gale force winds aren’t driven by a psychological “glitch”. Mother Nature isn’t a democrat or a republican that argues an issue on principal. We LITERALLY have no control over such acts of nature.

I was able to help my children process this tragedy by taking them to volunteer at shelters, donating a truckload of toys to kids who called home a high school classroom and a cot. I had the kids help friends and strangers clean up, repair or replace. I hugged them as they cried for friends’ whose homes literally disappeared. I wiped their tears and promised them we are “Jersey Strong” and we will rebuild bigger and better. And so the healing began, and continues to.

But this… THIS… is no act of nature. And we aren’t powerless to this. It may FEEL like we are. But somewhere, somehow we have to figure out how to protect our children from ourselves and our chest thumping, principal arguing, “rights” demanding selves. That young man, who I shall not refer to by name, is not to blame. WE ARE. We, as those same Americans who scream for our freedom and rights and equality, are the ones with blood on our hands. We let those children down. We abandoned those women who bravely gave their lives trying to save those precious angles. And yes.. we failed that mentally ill gunman and his mother. We need to decide that protecting our future presidents, musicians, doctors, lawyers, mothers, fathers, clergy, military, public service and every other possible thing that every one of those children COULD have and SHOULD have grown up to be, is BY FAR more valuable and worth protecting than some ink put to paper on December 15, 1791.

When Irish Eyes are Smilin’ and Cryin’ From Laffin’ So Much.

My ancestral home, Ireland.. Éire if you want to get technical.

The interesting things I learned this weekend researching it with Kasey for her school project..

“There are not only no snakes in Ireland, but no native turtles. There are frogs, one salamander, called a newt, and one lizard that bears its young alive.”

After she read that aloud, Kasey and I had the most interesting conversation….

Mom… ???

Yes Kasey..

There’s only one salamander in Ireland?

Yes, Kasey.

Why?

Well, after the ice age, any other species that might have been there were gone from the cold. And because Ireland is an island they really cant relocate themselves from other places…so… just the one salamander!

Where does it live?

Probably under rocks.. there are a lot of rocks in Ireland.

But what if someone kills him? His name is Newt!

If you could have seen my face. I laughed, I cried, I peed.

Charlie comes in….

Kasey re-reads it. Still looking at me like Newt just popped out of my forehead.

She wonders why I am sitting down, nearly passed out from laughing till I was breathless.

She figures it out. Smiles…

All Charlie hears is “no” and what he thought was “dogs”.

There are no dogs in Ireland? What?

Because I am a terrible mother and I like to prey on my children’s innocence, I say “ Just three…and they all live with Newt”

Kasey chimes in “Under his rock.”

And then we went to school…..

 

Gosh… I hope Charlie doesn’t tell his teacher about the one salamander in Ireland named Newt who lives under a rock with his three dogs…

 

 

I would really love to include a picture of the 2 salamanders TJ used to have when he was in 5th grade…but the only pictures that were ever taken were of them playing leap frog.

But they really weren’t playing leap frog. I just told everyone they were playing leap frog. Because the only thing two boy salamanders do like that together is leap frog.

RIIIIIGHT????

An Open Letter of Apology to My Teenagers

An Open Letter of Apology to my Teenage Children

I’m sorry you think your life is so terrible that you can’t wait to turn 18 and leave. I’m sorry you think I am a “creeper and stalker.” I’m sorry that you hate how I am aware of current trends and technologies. And I am sorry that you are mad that I am not one of the “chill” parent who don’t care what their kids are up to.

You can’t wait to leave this house, eh? Just remember, when I was 18 and got mad that my parents made me be home before 11pm, made me pay for my car, made me do my own laundry, made me got to college, made me work and made me responsible for my own actions and choices. So, I left home. Cool, right? Awesome! Freedom! I struggled with three jobs, rent, and lost my car because I couldn’t afford gas, insurance or repairs. I had to drag my laundry to a Laundromat and remember no car. So I drug it in the driving rain, freezing snow, blazing sun and pitch dark.( By the way, it sucked. Big time.) Sometimes I did not have enough money for laundry. Or I would wash it and not have enough to dry it. Once, in the kitchen sink, I had to hand wash my work uniform (which, by the way, my sister paid for, because I was broke). I was running late, so I decided to dry it in the microwave even though it had metal buttons. It started smoking. I pulled it out, threw it out the second story window, and watched it as it spontaneously burst into flames and disintegrated in a pile of ashes and smoldering wet grass…I was REALLY late for work that day…There wasn’t much time for freedom because I had to work so much. And I had really crappy waitressing jobs because even back in the olden days, the first question on an application is “What college did you attend?” and “What Major/Degree?” not “What college did you quit going to because you wanted to be awesome and have freedom?” and “What degree did you attempt but never acquire because you had to work three jobs to pay for your awesome freedom?”

When I was a teenager, the words “creeper and stalker” were casually used to describe derelicts such as dirty minded old men who wore a trench coat over his birthday suit and thought he had something worth flashing to whomever was lucky enough to cross his path and the geeky kid at the school library who constantly watched what book you looked at so he could tell you he read it, and how it ended. Sadly, in this day and age, those words are used to describe violent sex offenders, pathological serial rapists and apparently also, middle-aged moms who keep their teenagers Twitter feeds on their phone so she can have a semblance of an idea of what’s going on in their complicated, angst filled lives. Go me. That’s an accomplishment. I actually got called both!

When I was growing up and computers were introduced in schools, my parents were like the Neanderthals. Computers were fire and they were scared shitless of it although they had an inkling that they were going to play an important role in the future. We were learning how to write code in the computer lab and they were still getting used to color television. Computers were too much for their dementia riddled brains to manage.( yes.. I thought my parents were old and out of touch too. And nosey. And obnoxious. And embarrassing.) To be honest, they never really caught on to the world wide web till long after I was married and had kids. But you forget. My parents were introduces to computers as adults. I grew up WITH computers. As the technology advanced, I did with it. And where I could have EASILY hid stuff from my parents on our old Commodore, I never needed to. They couldn’t even turn the damn thing on. But you? There isn’t much you guys can get past me. From things as simple as checking history, temporary files or cookies to the more advanced programs that I will not name and give up my hand. If I told you how easy was to check on you, you would throw your computer, phone and xbox out the window and lock yourselves in the closet. Forever. But it is with that same ease of access that I have, that others with less genuine intentions have as well…and I fear for you guys..

I keep tabs on you. Yes. But you have to understand for 9 months you grew inside me. Then for about 9-10 years you were practically, physically attached to me at all times because you were soul sucking toddlers that grew into whiny, needy kids. Then you started to branch out on your own and I had to let go and watch you wade through life in the 21^st century. Now, you are, for all intent purposes on your own out there. And I get scared. I get nervous. As you grew up, I hopefully instilled values that will act as a compass in life steering you in the right direction. But, I still have to watch you on your way. I used to have Facebook. I perused in the backgrounds. I made you friend me so I could see what was on your page. But we have stepped into the next stage of life. You have evolved into tweeting young adults. Your world in 140 characters. Sometimes a complete sentence, sometimes coyly arranged symbols made to resemble something usually inappropriate or even an emoji . A steaming turd to tell the world you are pissed because just because. A hand showing the peace symbol to show that you too are a true believer of YOLO. Award winning images of stupid smiles, crossed eyes, a cookie, screenshots of your phone or pictures of your dog in a blanket so poignant that Ansell Adams himself would have ditched his landscapes to capture the life force of a Chihuahua wrapped in fleece if he only knew just how awesome it was. I haven’t made you add me. But I still watched your feeds. Like a good parent. Like a loving mother. Like someone who would stop at nothing to keep you safe and protected. Yes, I watched you. But did I ever have to approach you on it? Have I ever had to get involved? Have you ever gotten in trouble for anything other than being a slob or torturing your little brothers and sisters? No. I haven’t. And I attribute that to the fact that your father and I have raised amazing kids. In fact you are great kids. You make good, solid, responsible decisions. I don’t care what celebrity you are in love with, I don’t care about the new emojis just released, I don’t care how many F-bombs you drop. It’s a rite of passage. Im “chill” with it. I care who your friends are. I care who tweets bout getting high or drunk. I care who has loose morals and no self worth. I care not about the judgments you will make, but I care more about the pressures and expectations that may be put on you. I want to be prepared to deal with whatever comes your way. I want to be able to intervene with accurate knowledge and information.

I simply want to be your parent.

And for that… I’m not sorry… Not even close…

 

“I’ll love you forever, I’ll like you for always, as long as I’m living, my baby, you’ll be.”-

Robert N. Munsh – I’ll Love You Forever

CLICK TO A CURE!

Please, please PLEASE go to this link and VOTE! VOTE! VOTE!

Then SHARE on your FB pages and sites. SHARE!  SHARE! SHARE!

TWEET THE CRAP OUT OF IT!

WE ONLY HAVE ABOUT 24 HOURS LEFT! VOTING ENDS MIDNIGHT TOMORROW!  (11.59pm  September 19, 2012, EST)

All it takes is some cutting, pasting and clicking,

Something I KNOW the vast majority of you are masterful experts at.

The DBA Foundation has qualified for a unique and exciting opportunity! We are competing in the Chase Community Giving Program and have a chance to win between $10,000 – $250,000! Over $5 million will be awarded to the top 196 charities receiving the most votes during September 6-19. This amount of money would have a huge impact on our organization and the research we could fund!

https://apps.facebook.com/chasecommunitygiving/charity/view/ein/16-1459422?ref=dd50545ebe

There are 7,000 organizations we are competing against and the animal shelter ones all have celebrity endorsers. We just have the parents and patients dealing with DBA.

Please share this link EVERY WHERE YOU CAN!

Diamond Blackfan Anemia is an orphan disease.  “orphan disease” describe diseases that are neglected by doctors, but  more specifically the term orphan disease is used to designate diseases that affect only small numbers of individuals (so-called health orphans).There is no satisfactory definition of an orphan disease. In the USA it is defined as one that affects fewer than 200 000 individuals. Well, DBA affects about 1,ooo… WORLD WIDE.

Yeah. Whoa….

When my daughter was born, there was only ONE gene identified and it WAS’NT hers. The rarity of this orphan disease meant it was up to us DBA families as a community to raise funds and awareness for research into this disease. Today they have identified almost 10 genes and unlocked many mysteries behind those three little letters, DBA. Some that are even pointing towards a cure for cancer.  Without the minimal research that has been done so far, it is NO DOUBT that my daughter would NOT be alive today

We WERE in the top 5 a few days ago but we keep getting bumped down. The most upsetting part is the vast majority of the groups beating us, are animal shelter and animal rights groups. They have celebrity endorsers that are tweeting  for the shelter and BAM, their fans flood the site with votes. Please don’t get me wrong.. I LOVE ANIMALS. We have NINE rescue dogs.. a rescued rabbit…a rescued turtle and get this… a pig. Yes… a friggin pig. Sheldon is our housepet now, and not someones pork roll egg and cheese sammich. SO we support shelters but humans lives are at stake here… I kinda would like to think that our children who are sick and some even dying out rank an animal. No matter how sad and depressing the images look and how wistful and angelic Sarah Mclachlan sings… our kids and loved ones suffering with DBA are more important!

13 years of DBA

And Then I Lost My Bleeping Mind.

So, there we were. Our weekly trip to BJs. (seriously.. did the PR rep helping launch this company even remotely CONSIDER the ramifications of naming a whorehouse, I mean warehouse, this??)

Anywho, walking into the store, deflecting an onslaught of “MOM! look at this!” “Mom, hey, mom….mom!” and “MOOOOM!! Are you even listening to me??” from 4 of the most NEEDY kids in the PLANET I found myself feeling faint. I felt a crushing pain in my chest all the way into my shoulderblades. My heart was beating in my throat. My eyesight went dim and in the distance I heard “Dad, why is mom standing against the wall like that?” I felt the rough cement of the outside wall cutting into my forehead, but kept thinking it was so nice and cool here in the corner. Clutching my chest I looked over to everyone walking inside. It felt like they were a million miles away. THey all came back and Joe giuded me to the shopping cart. I held on for dear life like I was on a sinking ship. Knowing I have an electrical fault that has required me to take beta blockers in the past, I kept thinking, “Oh God, not another frigging Dr.s appointment to make.” That meant making an appointment with my primary care physician, so she can tell me I need to see a cardiologist, which I laready know. A referral to a cardio means finding one locally, and that means being a new patient. WHich also means shit loads of papers to fill out, which requires writing with a pen, which requires hands that dont have a mind of their own like some mummified monkey hand in a Stephen King book. Which I dont clearly have. A mummified monkey hand nor a functioning pair of my own. You cant tell but the spell check on this computer gets used and abused becuase my spastic hands like to make shit up as I go along. My mind is already imagining myself hooked up to another Holter moniter and itching like crazy from the sticky things yet my body is still standing outside the store clinging to a shopping cart like a dingleberry on my Jack Russles ass.

Then the nausea hits. Joe guides me inside and before I know it we are halfway done shopping and I can hear myself telling Joe that I have to go to the bathroom before I either pee my pants, or puke. Likely, both. I can only imagine what I looked like stumbling to the bathroom. Drunk I imagine. Drunk and sick. Clear the way everyone, shes gonna blow!

I made it to the bathroom, got into a stall and sat. Deep breaths. I think to myself, Ahhhh….  silence. Its cool in here.. ok, I can regroup. Overhead the radio is playing Gary Numans song “Cars”. So, I start to sing to myself “Here in my stall, I feel safest of all, I can lock all the doors. Its the only way to live in stalls.”

Then I hear it. A fart. A HUGE one. ::gasp:: Im not alone! Suddenly my bathroomate has what I can only describe as a complete and total evacuation of her bowels. Its noisy, its splashy, and its…gag…smelly. Then I think to myself, this poor woman probably came in here, grateful it was empty, because she HAD to know it was going to be a crime scene. You dont NOT feel a episode like that coming on. As shes sitting there praying no one comes in, here comes this crazy person, in a flurry of activity and incoherent mumbling. Slamming doors, throwing herself about, sobbing and then suddenly starts singing “alone in my stall” ?? At that point, I’m sure she decided that I was so delirious that her festivities would go unnoticed by the babbling psychopath two stalls down.

I clapped my hands over my mouth and picked my feet up, perched on the toilet like a co-ed in some no budget horror film, waiting for the mass murderer to find me. I can feel the tears coming and I know I’m about to cry for no good reason. I’m certain that if I throw up now, my heart will pop out because it has somehow managed to squirm its way into my throat. The noises and gaseous explosions to the right of me dissipate and we found ourselves bathed in silence yet again. But not the safe silence of solitude. More like the guilty silence of KNOWING someone else heard you 1.) shit your brains out and 2.) loose your fucking mind. Then I start to panic MORE because I’m having flashbacks of my colon prep and almost having sympathy pains, emotional and physical ones for this poor soul. She flushed and exited her stall while I prayed to baby Jesus and all that is holy, she is one of those disgusting people who don’t wash their hands. I just wanted her to leave so I could continue to dissolve into a pile of ruins in peace and non farty quiet.

But noooo… shes a cleanly type of person. She is a SCRUBBER. (I can understand why considering what I just heard) I swore “Paging Dr. Shityerpants to the OR” was going to be heard over head because she scrubbed like she was prepping to do surgery. Even WORSE, she choose the sink RIGHT IN FRONT OF MY STALL….Where I could see her stunningly bright orange jacket right through the inappropriately wide cracks in the framework of the bathroom stalls. Those things MUST be designed by men. They have urinals and stalls with no doors. The let it fly no matter whos watching. We women tend to like privacy while we act human.

Finally she leaves just as I’m about to swallow the nose drool that has poured out my nose and into my cupped hands. ::gasp::

I cry and cry, perched on a toilet in BJs Warehouse. Why am I crying? I’m sure there are a billion reasons why, I just cant point to the one thing that triggered it. I just am. A few moments later I emerge and dunk my head in cold water. Thankfully, having not much hair at all is conducive to soaking your head in a public sink. I splash my face and dry off… Kylie comes in and asks me if I’m ok. I tell her I’m fine and notice the look on her face. Not fear. Or worry. Or concern. Its the look of “Ewwww..what died in here!” I told her THAT was not me. I finish up, leave the bathroom with my head down, determined to not have to look into the eyes of ANYONE wearing an orange jacket. I can only imagine the “moment” of recognition. Eyes that say “OMG! You the lunatic crying and singing in the bathroom!” and “Damn! Your the lady that just shit out a wildebeest!”

As Kylie takes my hand and leads me to where Joe is in line to pay for our groceries, I can only think one thing…

thank God I wasn’t the one shitting out the wildebeest.

If Hospitals Gave Frequent Flyer Miles…

If hospitals gave frequent flyer miles, Id be typing this up from a secluded island somewhere while I sipped a bluish drink with lots of alcohol in it as Joe slept in a lounge chair next to me. Instead, I am in bleach stained sweats, fighting with a 7 year old computer, drinking cold coffee while Joe is at work trying to escape from me.

The last month or so has been a test of my emergency broadcast system. Almost like a OEM drill, but not a drill. More like a challenge. And as usual, I managed to meet the challenge with grace and wisdom. OK, who the fuck are we kidding here. I have been a total mess. The only miracle is that no kids or animals were harmed in the making of this update. Wait, scratch that. One kid was harmed, but it was TOTALLY not my fault.  This time. Charlie sustained minor damage while saving the world from aliens. At least that what he will tell you. The way I heard it was Charlie, the youngest of a group of boys and man/childs playing basketball down the street, was playing (and by playing I mean standing amongst everyone) basketball and a another kid (and by kid I mean a 20something year old) managed to connect his elbow with Charlies face. (and by face I mean eye) I had already resigned myself to bed because the prior two weeks spent in the hospital with Kylie (I will get to that later) had sucked the life out of me and I was on the brink of death from mental and physical exhaustion. More mental than physical because come on, lets face it, sitting in the hospital hurrying up and waiting is not a contact sport. Although it sure as hell fells like it. In fact, I am going to propose a new Olympic event. Hurry Up and Wait For The Doctor. I have trained for 13 years for this. I have this gold medal clinched. But, I digress… So. there I am, settling in for the night (and by setteling in I mean fighting off kids and dogs for my spot in my bed) when I heard the front door. Followed by Charlie sobbing. Not an unusual sound in this house, I figured he was just being Charlie. The little brother. Then I heard TJ. “Mom…come here.” More than used to being called to “deal” with “Charlie, the whiny butt” I said “No, you guys come up here!” Before he could finish saying “No, Mom…you NEED to come here!” I was already downstairs, one slipper on, fumbling to get my glasses back on my face. He had THAT tone. You know the tone of “oh shit, we are in SOOO much trouble for breaking our little brother AGAIN.” There sat Charlie. Blood dripping from what looked like everywhere on his face. Dearlordinheaven the head can bleed. Upon further inspection I saw a nice gash under his eyebrow that was no way a “suck it up buttercup” kind of injury. I was already heading back upstairs when Joe made it down and I can only imagine the look on his face. Back upstairs he came, where I was already dressed and ready to roll. Off to the ER the three of us went to get Humpty Dumpty glued back together again.

     Now, mind you, this event came on the tail end of two weeks in the hospital with Kylie, who decided that our life isn’t an insane asylum enough and she had a burning desire to spice things up a bit. A bleeding ulcer had drained my child of epic amounts of blood. Thanks to her stem cell transplant in 05, her normal hemoglobin is at about a 15. Thanks to the ulcer, it dropped below 9! Scans, tests, a bowel prep and an upper and lower endoscopy left her exhausted and empty but some prevacid was all it took to nip the issue in the bud. Finally discharged home, we THOUGHT we could take a deep breath and relax.

WRONG!

We get home from the ER with Charlie and Kylie informs me she had another bloody poop. But rather than the black coffee ground poop of a bleeding ulcer, it was fresh, bright red blood. Not a neophyte to the whole sick kid thing, I knew running to her hospital (not the same as Charlie had just been to, we like VARIETY!) would only get us a whole bunch of waiting until the GI came in the next morning. So, with one eye on Charlie and one eye on Kylie, I slept. Get it? Both eyes were open. No sleeping for Heather…

The next day my one eyed wonder Charlie stayed on the couch while Kylie packed for what she knew was going to wind up as another admission to the hospital. I called her Dr. and made arrangements to head up to the hospital. Her hb had been almost a 12 at her last discharge was now back down to the low 10′s. Her lab results indicate a long, slow bleed somewhere. SOMEWHERE? What the hell? SOMEWHERE? We can operate on a fetus in the mothers womb, we can reattach faces and hands, we can make women, men and vice versa but we cant “find” where my child is bleeding from????

Another few days, a series of tests, some group pow wows with a melange of Drs and everyone is scratching their heads. With no recent bleeding, Kylie was sent home where we scheduled a capsule endoscopy, had her last biopsy results FedExed to her transplant team in Long Island and a whole bunch ow WTF?s. So Back to my Olympic training. Wait. Wait for the endoscopy. Wait for Long Island to get the slides. Wait for that long drive to Choens Childrens Hospital  where we will see her transplant Dr.s who will no doubt have theories that will scare the shit out of me. 

So…what to do while I wait? Oh, I don’t know… clean my house that looks like a crime scene on The First 48? Do laundry that is piled so high in my basement I will need hiking gear and an O2 tank? Order 2,000lbs of mulch for my flower beds? Nahhhhh…that would make sense. That would be PRACTICAL… You all know how reasonable and practical I am. No.. I decide that its time to flip my wig, spazz out, reserve a room at the Rubber Ramada. I decide its time… to have… my very first… anxiety attack.

Go big or go home, BITCHES!

 

Special Needs Made My Kids Super Awesome.

My kids are pretty dang awesome.  TylerLee volunteers with her cousin about once a month to serve dinners at a local church. She was asked to be a part of a program called Ambassadors of Friendship in grade school and often scolds the “mean girls” for making fun of the “differently abled” students in her school. Kylie joined a club at school where she stays after to help with autistic kids and is the Student Ambassador of her grade. Her teacher often asks Kylie to help others with their organizational and listening skills. Because of her disabilities, she is in an “inclusion” class that has a wide range of kids with needs. (We have all decided, teachers, guidance and I, that the goal will be to have Kylie removed from inclusion by high school) Ryan actually volunteers to sit with the Special Needs kids in his lunch period because no one else will, and that makes them feel bad. He frequently helps talk a classmate “down” from his high anxiety in school and when he found out this young boy was obsessed with Super Mario Brothers, he gave him his very own special edition Flying Mario plush doll for Christmas. Jordyn uses her own money to buy little funky erasers to give to a “special” classmate who needs a little more coaxing to pay attention during lessons than everyone else. KaseyMae is known everywhere as “the friend of the friendless” and Charlie, oh sweet Charlie, that kid asked if he could save his cupcake and bring it to a kid in school who missed a class party. Each one has been recognized by their schools as a “Proud Patriot” or “Student of the Month” and given awards based on their positive qualities like kindness, compassion or honesty multiple times. They give up their seats at events for others, they are drawn to those who are not usually accepted by society as viable or equal.

My kids obviously have a trend here…. They gravitate to those less fortunate than them, and I don’t mean financially…..

      My favorite memory of them was about 10 years ago. We were in the grocery store… I was VERY pregnant with Kasey.  TJ, Cody, TylerLee, Ryan and Jordyn were with me. Kylie was still institutionalized and vent dependent, in a wheelchair. While shopping, my kids attention was drawn to a young girl. They flocked around her, talking about her t shirt. Buzz Lightyear was the bomb at the time and they were all a-twitter with talk about Toy Story, how awesome the shirt was, where did she get it, how much was it, yada yada yada….. Finally I had to drag them away. Toddler Ryan shouting INFINITY BEYOND! over and over, louder and louder.  On we went with our shopping. A woman tapped me on the shoulder. She was in scrubs and was apparently this young girls day nurse. She said, with teary eyes,  “I want to tell you how amazing your kids are. Usually, ESPECIALLY, children, shun her, are afraid of her and never talk to her. Your children approached her, talked to her and never ONCE acted like there was anything different between them. I haven’t seen her smile like this in the 7 years I have been her nurse…” She hugged me and went on her way. Oh, did I not mention that this girl was strapped into her purple motorized wheelchair. She was vent dependent and a paraplegic. Severely brain damaged, obviously suffering some sort of cranio-facial disfigurement. I will never know it if was from birth or the result of a disease or accident. But it was no matter. My children never noticed. To them, feeding tubes, treachs and the loud, scary “woosh” of the ventilator were normal.

      They were raised in a home where that was our status quo. There was nothing “wrong” with it. To them, the question more often was “Doesn’t EVERYONE have a disabled sibling???” and never “Why do WE have a disabled sibling???” The word sibling was obviously not my 4 year olds chosen vernacular, but you get my drift.

When you are young or born into a family with a child with special needs the quote “the only thing normal in my house is a dial on the washing machine” pretty much says it all. A childs formative years are crucial. Teaching them tolerance, kindness and acceptance is tantamount to teaching them to walk, talk and double wrap your hand when wiping number two…

As I have been in this “world” for almost 13 years, I have seen it go both ways. I know families who have children that cannot accept the extra needs of their brother or sister. I know kids who write “I hate my life.” on their Facebook because of the excessive needs of a sibling leave them feeling neglected, forgotten, less important. Even though I KNOW the parents take every precaution otherwise. Some kids just don’t “get it”. They just can’t. Some kids learn to “get it”. Some kids just naturally do.

{DISCLAIMER: The VAST majority of families I know who also live, love and laugh with DBA www.dbafoundation.org  are nothing short of miracles. Siblings are BFFs, parents are only mildly insane (unlike Joe and I, who are perfectly and completely certifiable) and extended family is right there picking up the Reeces Pieces. But some are truly in crisis and ill equipped to deal with such a potentially tragic disease. Please, join me and praying for them.}

My steps sons were older when Kylie was born and were mature and understanding about the situation. Something I could never thank them enough for…Of our 7 other children, excluding Kylie, I only know of one who exhibited some of those “not getting it” emotions.  And they were mild and brief, definitely related to a certain age group. I am fairly certain it was mostly associated with other issues in their life and having a sick sister was just the most obvious and tangible thing to blame.

I had it lucky. I really mean it. Sure it was complicated. When she wasn’t hospitalized she was home with 24 hour nursing. Daily doctors appointments. Sometimes two or three. Strangers invaded our house on a regular basis. And often the fill ins were down right miserable. Some months, my kids spent more time coloring in doctors waiting rooms and ERs being patient, quiet and polite than they spent playing in their playroom  or backyard at home. And they handled it all with grace and humor and the pure, unconditional love of a child that was my saving grace during my darkest days of desperation and sorrow….

So suffice it to say, their experience with a sister with special needs deeply affected them. But in an amazing, blessed and beautiful way. They love deeper, laugh louder, hug more. They don’t judge (unless you wear shorts with Ugg boots or root for anyone other than the Giants) They truly know what’s important. I see this aspect of their life affecting their future in nothing but positive ways. So, when people say “Wow, that must have been tough!” I can truly say, “It could have REALLY been worse.”

So my advice to you, if you are ever faced with the birth of a child in your family that will require special attention, make it as normal and accepted as possible. As scared and overwhelmed as you may be, don’t let your other kids see, hear or feel your panic. They will look to you for guidance. They will emulate your behaviors. They will copy your actions, attitude and emotions. To a fault, actually. My kids think farting is ENTIRELY too funny thanks to me…And Joe will never forgive me for it.

so my loves, live special, love special and laugh, ESPECIALLY!

Now that I got that out of the way, be prepared. Because my next post will be about our “Family Meeting” and just how fucking awful my kids can sometimes be.

To Blessed to Be Depressed.

Let me start off by apologizing to all of you who have blogs that have been neglected by me. I love you all and your amazing awesomeness, but my time has been consumed with my recent endeavor of trying to do THE perfect impression of a couch cushion. Its been hard work that takes me hours upon hours a day to work on. My practice schedule has been grueling and Joe and the kids have even taken over most of my chores so that I can dedicate my time and energy to honing my skill. I take my meals (chicken soup) while I practice, I help with homework while I practice, and if I get any more invested in this process, I will me taking my potty time there too.

I know, I know…. I am a slave to my craft. I cant help it, that’s how I roll. Actually I creep, and limp, rolling is not on my To Do list just yet.

For the last month I have played the medicine tango trying to find the right forms of the right kinds of medicine in the right doses to get me back to doing my epic and highly applauded impression of a middle-aged lunatic. As I change my dosing in my Medication Reminder app on my phone, it offers me links to websites that discuss each medicine in detail. What. A. Mistake. THAT was.

One medicine can cause testicular swelling and pain. My first thought was “OMG I’m going to grow testicles? Then they are gonna swell and hurt??? Oh, hell no!”

Another side effect was loss of hair, but JUST for men, it includes facial hair and chest hairs. Bastards. Luck out every time. First we get stuck with periods, now this???  My head may go bald but Ill have to wax my lip and chest? I cry party foul.

Yet another was acne. Seriously? Acne? Hey, Heather, you have a potentially debilitating autoimmune disease, that there is no cure for, but we can try and diminish the symptoms and delay the joint damage. Unfortunately, your acne will be so bad you will probably wish you were dead. Buck up, kiddo. Add the pimples with the hair loss, pale skin from the mild anemia and inability to be exposed to sunlight for long periods of time and you can go out on Halloween as a Caillou hitting puberty!

Then there were the ones that REALLY made me laugh “brain zaps”-really? Is this actually accepted by doctors and clinicians as a accurate medical term? If you want to experience a brain zap without taking a highly questionable medicine for an undetermined amount of time, do what my sister did to me. Unscrew a light bulb from a lamp, turn the lamp on, then, in the sweetest most loving voice possible, convince yourself (or your little sister) to stick a finger in the socket. There you go. My gift to you. Your welcome. Don’t say I never gave you anything.

As the list continues, I find myself getting more and more hubristic. Night terrors??? pffttt… they ain’t got nothing on me. Night terrors are when you have 6 kids in your bed all vomiting at the same time at 3:30 in the morning before you have to get up at 6am and drive 100 miles to the hospital  to see your daughter who is in a medically induced coma because she inhaled cucumber into her lung, blocking off 90% of her bronchi in one lung.

A night terror, is waking up at 11pm in a hotel room, 100 miles from home, to your daughter unable to breathe. You take her and her 3 sisters to the ER where she continues to succumb to pulmonary embolisms and slowly slips into respiratory failure. You then drive the three sisters the 100 miles home at 4am only to turn around and go right back, travelling 200 miles in less than 2.5 hours, to get back before the sick daughter is put on a ventilator.

Yeah, night terrors. Puuhhlease…. BRING IT!

Then there is the brief paralysis and the auditory/visual hallucinations. Now, don’t get me wrong, these things, taken in a certain light are awful terrible things. Really. But who hasn’t pretended to be sitting on the couch, sound asleep when you heard the pitter patter of a child coming to whine about someone breathing their air or thinking about touching their things? Sorry Kasey Mae, mommy cant stop Jordyn from looking at you with her eyes right now, I am temporarily paralyzed. Yeah, um Ryan, mom cant help you with your diorama on the sexual cycle of the jellyfish. That damn paralysis again. Dinner? You’re gonna have to order a pizza because right after I got this bowl of ice cream and glass of wine, I became temporarily paralyzed. Oh the burden of temporary (discretionary) paralysis!

How about the auditory/visual  hallucinations?  I’ve heard Kylies screams while having a bone marrow aspirate without anesthesia and I saw Ryan’s little body crumpled in the street, posturing and seizing, after being hit by a car. There is nothing worse left for me to see or hear. My luck, I’d hear things like Woody Wood Peckers maniacal laughter over and over in my head, or Ed McMahon telling me I won a million dollars, I just have to go to the bank and pick it up, at gunpoint.

Id be the one person to hallucinate that I am assisting the Labor and Delivery staff deliver Snookies baby. Talk about traumatic!

And the piece de resistance, unexplained weight loss. Let me clarify this: A.) there is no “unexplained” about it. You are SO sick for at least three days a week, the last thing on your mind is food. The sores in your mouth make it difficult to even drink. Your gums shed like peeling sheets of filo dough, and you wake up your lips are glued together with the strips of sticky buccal cells. Its sexy in the morning, I tell you. No wonder Joe closes his eyes when he kisses me goodbye in the morning.  And when you are actually hungry all you can stomach is light soup and yogurt. B.) It should be called “anticipated and appreciated” weight loss. Because after the last few months of immobility and stress/comfort eating, weight loss is a pro, as opposed to a con.

All in all, the side effects could potentially provide me with some serious entertainment, considering what a sick twist I am. But at the same time, some serious disability. The fact that my doctor said to me that for now, I will probably feel worse before I feel better should have been a hint at what was to come, so I cant say I was surprised to find myself so sick, but as I begin to feel relief from the pain and find myself regaining abilities that the joint damage had previously robbed me of, it really makes me kick myself for not changing doctors sooner.

For years my other doctor told me she suspected I had Rheumatoid Arthritis, but my RA factors weren’t elevated. Come back in 6 months and we’ll test  your blood again, she would say. In January when my symptoms became so severe, I called the office to get an appointment. Next available was in APRIL. Yes, April. That’s how they treat a patient of the last 5 years. Unless of course I wanted to go thru the ER. Then I would get whatever Dr. was on call, and maybe THEN I could get a sooner follow up appointment. I don’t have to tell you what I had to say about THAT. Yes, it started with F and ended with K and wasn’t fire truck.

Who knew, a week later I would have a 20 minute appointment with a new doctor and some less often utilized blood tests that would reveal I, in fact, had a different autoimmune disorder called Psoriatic Arthritis (PsA). And get this, I am one of the VERY few people to have PsA, WITHOUT PSORIASIS! Ain’t that some shit?

On my second visit, x rays in hand, diagnosis confirmed, she explained this disease to me, she said that we would need to be fairly aggressive as the diseases progression had already caused irreversible damage in my back, neck, shoulder, hands and feet. She gave me some pamphlets explaining about the chemotherapy and nerve blocking medicines I would be taking, along with the vitamin supplements I would need and suggested physical activities that could improve my joint mobility once the medicines started to work. She was serious, and apologetic. She was sorry to have to be telling a 39 year old woman with ten kids that she had this incurable auto immune disease. She was sorry she couldn’t guarantee me, now diagnosed and on a treatment program, a long life, pain free and fully functioning. The success of treatment for PsA is a crap shoot really. No rhyme or reason. For some it works, for some it doesn’t. If the first plan of attack is unsuccessful there are stronger “biologic” medicines we could try, but the side effects were stronger and more severe. The longer we avoid them, the better. And I sat there smiling. Grinning really. I’m fairly certain she thought I was nuts. No, really nuts. REALLY. After she gave me two cortisone shots in my left thumb and right shoulder and I did not even flinch, I was SURE she thought I was nuts.

On my 3rd visit, we discussed my experience with the methotrexate, and she doubled the dose. Thanks, doc, you’re a gem. NOT! We adjusted the Cymbalta, discussed new pains, she offered more cortisone shots. And with a smile on my face I passed. I said I’ll wait another few weeks. If I have a life time of cortisone shots ahead of me, starting off at three week intervals cant be good.

The Cymbalta is an anti depressant used to treat social anxiety disorders and neuropathic pain. It deals with serotonin and norepinephrine. Obviously, social anxiety is NOT an issue I struggle with. Although I highly suspect Joe wishes I did.

I sat there while she poked and prodded, grimacing when it hurt, giggling when it tickled. She asked how things were at home. I told her how the kids and I made eggplant rollatini for Joes birthday dinner and homemade coconut and vanilla bean cupcakes. She said it was cute how I smiled when I said his name and how she should really do things like that for her husband. I told her my husband is the driving force that we still need to “date”  and “woo” each other so it never gets old. She said she was going to try that with her marriage too. We realized our birthdays are a week apart. Both about to turn 40, I’m excited for it, she would rather not think about it. She commented on my electric lime green Uggs and asked how to clean her daughters brown ones. Before I left she said “I will see you in two months. Unless you need me before then, just call, we will get you in. Remember, I’m here for you, if you need anything, please, just call!”

I just smiled.

I smiled because I knew she meant it. I smiled because I had played the piano the day before with TylerLee for the first time since Christmas. I smiled because I can use my pepper grinder again. I smiled because, although my hair has started to fall out, its very thick, and so far, unnoticeable. And if it does become obvious, who more to rock out the Gollum look than me? Seriously folks. The woman who forgets to get her hair cut for TWO YEARS? I obviously have no real attachment to my coif. I smiled because I have a loving husband and ten kids to inspire me to fight whatever comes my way. And if my daughter can handle an experimental stem cell transplant with nothing but grace and giggles at five years old, I can handle a couple of methotrexate pills a week with minimal bitching as I welcome my 40’s.

Life is good.

I am loved.

Laughter is by far, the best medicine.

And when it all boils down to it….

I am too blessed to be depressed.