I have been a tad under the weather lately and Shiz just ain’t going the way it is supposed to. I decided to try something different and make a VLOG.
It’s long. Too long. But no one has ever accused me of being reticent, so there’s that. Also! When I am nervous I fiddle with my hair and pick at my ears a lot.
You’re welcome.
I’m not one of those OMFSM MY LIFE IS SOOOOOO HORRIBLE!!! types of people. I’ll admit that things have been a little darker in my life lately than they have been in the past. The past few months, in fact, have been filled with challenge after challenge after challenge. I’m a bit weary but I’m hanging in there.
I do, however, want to come clean about something. Sometimes I feel like I’m not keeping it real, telling the whole truth. I don’t like painting myself as a martyr or a saint. I don’t want anyone feeling sorry for me and I don’t want folks to think that my children’s lives are some horrible, negative, dark thing. We have challenges. We struggle. We get frustrated. And it’s really difficult to parent these kids.
But I feel that way about parenting in general.
See, I’m no hero. I’m not a saint. I’m not doing anything special or amazing or super. I’m not Supermom. I’m not a martyr. I’m not an attention whore.
I’m just a mom.
Perhaps it’s because I don’t know any better? I don’t have a reference point. My kids have always had developmental delays. I knew there was something up when they were quite wee. I don’t have a typically developing child so this is all I know. Perhaps that makes my perspective skewed.
Look, y’all. I’m not fighting autism. I’m not fighting special needs. I’m fighting FOR my children. I’m fighting to make their lives better, to help them reach their potential. It’s an uphill battle sometimes (both ways, in the snow). It’s as challenging and frustrating as it is rewarding. It’s humbling. It’s chock full of life lessons. And BOY HOWDY does it make you appreciate the little things in life so much more.
I’m parenting here. To the best of my ability. Some days are harder than others FO SHO. But isn’t that what we’re all doing? Trying to get by? Surviving from one moment to the next? Pushing through adversity, rising to challenges, conquering one and moving on? Yes, parenting these children has changed me in ways I never dreamed.
And now the keeping it real part:
We currently have no floors in most of the house, just subfloors. Because the carpets had pee and poo and soap and bleach and food and rips and…the list goes on.
We have holes in just about every door and wall in our house.
Our screens are ripped and we can’t open our second floor windows because Bugaboo will either throw something out or climb out.
We have to keep padlocks on doors and gates to attempt to keep him from running away.
He routinely climbs on top of the garage, the cross bar of the swingset, the poles that hold the safety net onto the trampoline, six foot fences, on top of the minivan…
We bought a new fridge two years ago, had it for five minutes and it was already dented and scratched. Yes, the boys did it.
Anything we buy or replace is broken/scratched/ruined/messed up within days.
We don’t get much sleep.
We could stand to lose some weight. And they boys need to gain some.
We don’t get out much. We spend most of our time at home.
We sometimes skip vacations because it’s just easier to stay home and not deal with the “transition” thing.
I belong to a gym and rarely get to work out. But I do get to take the boys swimming there.
We spend a lot of time in waiting rooms.
I know more about genetics and diseases and syndromes and medications and medical conditions than I ever thought I would know.
Bugaboo’s new, laminate floor is already ruined. He did the ruining.
Our dishes get broken quite often.
We have handprints and food and dust everywhere.
I’m lucky to get the basic housework done, plus clean clothes AND feed my family each day. Anything additional is a bonus.
Meltdowns that include your kid biting himself and screaming like he is being murdered SUCK. Meltdowns that occur that way in public suck more.
But there’s something I want you to know. Those things up there? They are challenging. Often frustrating. Sometimes I comfort eat because of them.
But.
Is this life hard? YOU BETCHA.
Does it sometimes make me angry and sad? YOU BETCHA.
Is my life horrible and tragic? HELL TO THE NO.
But my perspective is that life makes you feel that way anyway. There ain’t no Hardship Olympics, folks. We’re all challenged, we’ve all got stuff to deal with. Some more than others. But it’s life.
And life is what you make of it (lemons, lemonade, etc, etc.)
Me? I’m making potatoes. I bet you knew that.
You know, having an Upper Respiratory and resulting five week cough wasn’t enough. I needed more on my plate. I needed my whole family to get the flu the week after Christmas when they finally all went back to work or school. Bugaboo didn’t miss enough school from that or Christmas break so he needed to get a stomach virus last week and then he needed to share that virus with me. He also needed to have four day weekends three weeks in a row, and not a full week of school since Thanksgiving.
It’s opposite day. Again.
Look, Universe! Go pick on someone your own size! I buy organic, volunteer out the wazoo,donate to many worthy causes, am fairly humble and never say no to people in need. So I have to ask you, Universe: WHISKEY, TANGO, FOXTROT!
Wanna know what’s fun? Your kid puking and having the trots for twelve hours. And changing ten poopy pullups, pure liquid, running down his legs. And he’s nonverbal. And he can’t tell you what’s happening he just stands there with a look on his face. AND! STRINGS! COMING OUT! Better out than in, right? But wait! There’s more! He woke up in it (puke and poo). From head to toe. And no I’m not kidding.
And it gets better.
He was fine in twelve hours. Me? Three days. And then I got the genius idea to go on a carousel with him and ride it twice the day I finally got back on my feet. Hello, vertigo! It’s been too long since we’ve met last!
But the icing on the cake? Bugaboo has been having some weeeeeird behavioral symptoms. As in, the sleep thing and the behavior thing is kinda adding up to something I am suspicious we are revisiting. Stuff I don’t want to ever have to see again.
Between the antibiotics, antivirals, vitamins, cough meds and saline I feel like we are running a pharmacy. And that doesn’t include the regular daily so-my-kids-don’t-hurt-themselves medications.
This is where I admit I’m glad we have awesome access to awesome health care and feel super-duper fortunate.
Wanna know what sucks?
SOPA. And PIPA.
Wanna know what they are? Try googling Googlingthem today. Or check on Wikipedia. I’ll wait while you do that.
…
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Ok, now that you get it, follow these simple steps:
Go to Wikipedia.org
Type in you zip code
Write your local congressmen
Profit. Um. Well, in an intrinsically wealthy way. Like, on the inside and stuff. Ahem.
These acts will NOT protect people from piracy. What they do is give more govt control in an area where they need to keep their slimy little hands off. I don’t get all political and stuff often but this is one thing I feel strongly about. Not to mention, It could kill fun sites like LOLCATS. You don’t want to be responsible for killing cats and making baby kittens cry, do you? (The answer is no).
Protect the freedom of exchange of ideas, as the Internet was intended to be. Stop SOPA and PIPA now. Yes, you CAN make a difference. Just sayin’.
Disclaimer: While I normally keep it PG-13ish here at Casa DG, I’ve been processing the following for a few days and I’ve run through a plethora of emotions. Don’t say you haven’t been warned. PC? Against cussing? Don’t read. Just sayin’.
If you are local to Philly or in the Special Needs world, chances are you’ve heard of a little girl named Amelia. Amelia was born with a genetic disorder called Wolf-Hirschhorn Syndrome. This disorder carries many medical side-effects, developmental delays, you name it. One of the most daunting that Amelia is facing is a kidney transplant.
Amelia is three. THREE-YEARS-OLD. She has to go through a transplant, y’all. Do you know anything about transplants? Well, you can only get 2-3 of them in a lifetime and that’s if you don’t go through rejection. The transplant lasts something like 15 – 20 years and again, IF YOU DON’T GO THROUGH REJECTION. This is not a routine procedure, despite the fact that the doctors and experts have it down to a science. TEEHEE! No pun intended! Ok, it totally was…
My Point? Well, according to a Wolf-Hirschhorn blog, Amelia was just rejected by a local hospital near and dear to my heart. They don’t want to list her. They quote quality of life issues, compliance after transplant, mental delays…basically, they don’t want to transplant her. She’s sick. She’ll die without a transplant and live on dialysis for a long, long time (hopefully she’ll survive that long). And if she gets a transplant? We’re talking major, major medical interventions for a long, long time. It’s no walk in the park.
Here’s the deal, yo. The parents feel that their daughter was denied a transplant based on her mental status. And this isn’t the first time I’ve heard of this. I’ve seen other news stories, magazine articles, blogs and the like all detailing something similar. Other sick, desperately ill children. Children with a variety of medical issues. Children with mental/developmental delays, mostly due to their medical issues. And these children are being turned away.
I’m not here to get into a religious discussion or an ethical one. I’m not even talking about morals here. I may not be the biggest special needs advocate(though people think I’d make a great one. Funny, no?) but I have to say something. I have to say something because of my boy. Because he’s “retarded.” Because he’s “delayed.” Because he’s one of those kids that “isn’t going to contribute to society” and “drains our resources.”
Look, y’all. Put yourself in her family’s shoes for a moment. What if that were YOUR CHILD. And a doctor said, “Sorry, she’s retarded. She doesn’t deserve a kidney. Buh-bye!” And I know there’s more to this story and no doubt varying sides but I don’t give a rat’s ass.
This is about AMELIA.
This is about a little girl who deserves a chance to live, to grow, to play in the green grass, chase butterflies. To swing at the park on a beautiful spring day. To stick her toes in the sand and feel the waves crashing at her feet. She deserves life. Just like anyone else on this planet. So why is it our society suddenly doesn’t give two shits about kids like Amelia? Why is it that kids like mine are getting less and less respect? And don’t tell me it’s our president, it’s our laws, it’s our lack of morals, it’s our turning away from religions, it’s our new health care laws. etc, etc.
Bullshit.
It’s called entitlement and selfishness. It’s all about money and numbers and stats and data and businesses. No one wants to help anyone else anymore.
Or do they?
Because a few days ago, this happened.
And this.
And this.
And today? This. And this evening? THIS.
And now Amelia isn’t alone in this fight. People are fighting with her family. For Amelia, for their children. For the future.
This is opening up discussion and debate. People are paying attention. People are listening. Some are being asshats. Some are being awesome.
And people are helping, and you can, too. So go there. Read. Help. Pray, vibe, sprinkle fairy dust. Dance around a fire under a full moon. Whatever you can do.
Help Amelia. Because you’ll be helping kids like mine, too.
Lately Bugaboo has been giving me a run for my money. Since Christmas break he has been a teensy bit off schedule and that translates to a few weeks to readjust to being back in school. This phenomenon never ceases to boggle my mind since he CRAVES the schedule and the routine. So why is he so off schedule when he gets back to his regular schedule? Beats me.
All I know is he was back for a whopping two days and then Thursday came home, sat on the couch and didn’t move for about three hours. When I realized he had been sitting there for THREE. WHOLE. HOURS. without moving? I dug the thermometer out. My kids + not moving = prolly coming down with the plague. They never, ever stop moving. Even in their sleep. I don’t like sleeping with them at all, by the way. I usually wake up with a knee in the lady parts or an elbow hitting my nose or a head to my back. It’s a painful experience.
Now, getting Bugaboo’s temperature is akin to putting a cat in bathwater. I managed to get it somewhat, it was around 101-ish. BINGO! Fever. Faaaaaabulous. And he was just off for eleven days straight! And will be home again! Because the next day was Friday, and he wasn’t going to go back to school until AT LEAST Monday. Needless to say, I was thrilled.
Then I remembered: when my kids run fevers they don’t move. Hello! He’s not going to move! At all! I CAN SIT DOWN FOR AN EXTENDED LENGTH OF TIME!!! I can do crossword puzzles! Or read or watch tv! It was like Christmas all over again! Without the presents and cookies but still! Sitting! And sitting is winning! TIGER BLOOD!
And there he sat. Until Saturday night, when he suddenly sat straight up, looked at me quizzically and jumped outta bed with both feet and scampered off. Almost as if I flipped a light switch. Fever broke! Then he was back to his usual antics.
His usual antics? Well, the pica is at an all-time high at the moment. This is typical for the days following a school break. He has been picking on his socks lately. Actually, I lie. He has been shredding his socks for about a month. it came out of the blue, this picking holes and pulling threads. And it isn’t just his socks, oh no! His shirts, sweat pants, bedding…nothing is spared. He finds a loose thread and cannot resist the temptation. And I didn’t realize he was eating them, per se, until Saturday night.
See, Bugaboo is routinely, um, irregular? Stopped up? And so BMs are a major event at our house (Like, OMG! HE WENT! HOOOORAAAAY!). And Saturday night he put a pullup on himself, stood in front of the toilet and went. Then he got wipes out and proceeded to set the scene for me to clean him up. Smart boy! Making connections, right? That’s a good sign, right? Uh. Sure. Until I started cleaning him up. And he had…well, strings. Like, coming out of him. Stuck, like. Long ones. And I had to pull them out and stuff. Yes. This was so much fun.
Y’all don’t know what you’re missing. You haven’t LIVED until you’ve pulled sock threads out of your kids rear end. It’s the new pink.
PHEW! Boys are finally back to school (sooooo sorry to those of you still on winter break.) and I feel like I can breathe again. As far as breaks go, this one was a good one. Bugaboo wasn’t totally crawling out of his skin, he slept a little, ate a little and we kept him as busy as possible. WINNING!
We did stuff like bowling. Where Bugaboo hurled it down the lane without looking. Good times.
It was a tough break, though, for a variety of reasons. Firstly, because my father wasn’t with us. This whole dead-at-holidays shiz is The Suckiest That Ever Sucked. I get it, people die, life goes on,yadda, yadda. But my Dad was one vibrant soul and his death was so unexpected and happened so fast that we’re still reeling from it, see.
Add to that fact my mother. She hasn’t been feeling well, has fallen a few times and has ended up with some yucky injuries. BOO, INJURIES! BOO! YOU GO NOW! I have real concerns for her safety. Luckily for us, my very brave and crazy (read: STOOOOPID) sister is taking her on for a month or something at her house in Virginney. That should give those of us above the Mason Dixon Line a break from stuffs.
The worst part about all of this is their dog. You remember the killer-attack-dog, Cujo? The little, destructive scamp of a dog? Yes. Well, he belonged to my Dad. Mom isn’t in the physical condition to take care of a dog, see. I know for a fact my Dad would have loved it if I took Cujo on when he passed but the truth is, Cujo (all eight pounds of him) is more dog than I can handle. He has major dominance issues, doesn’t get along with Daisy the Three-Footed Wonder Dog and needs some retraining. Plus, The Guy I Live With would no doubt divorce me if I even thought of taking on another hard luck case dog right now.
So. There’s that. And the fact that I’m already totally overwhelmed with my life. Cujo went to a rescue yesterday. The people there couldn’t have been more lovely and I’m super glad they were willing to take him on and love him and take care of him. He’s a nice dog, easy to take care of and honestly well-behaved. But the dominance and marking? Well, it’s kinda bad. And I’m not the person to take it on, no matter how guilty I feel about the whole thing. My Dad loved that dog. It was part of him. And seeing Cujo move on, well, made me emotional yesterday. Especially since it was a month yesterday that he was gone. Sigh. It does get a little easier, right?
True to form, Bugaboo went back to school yesterday and then was up ALL. NIGHT. LONG last night. And when I say all night I mean, woke up about an hour after I finally got to sleep and every time I put him back to bed and began to doze off, he was opening his door and pitter patter pitter patter downstairs again. Which means I am extremely sleep deprived, since he didn’t sleep that well over break and I don’t get naps over break. Which means in terms of sleep bank accounts I’m overdrawn for insufficient funds and stuff. And they’ve closed down my account for review and I have no access to it.
For those of you not good at math, it means that I’m hoping to sneak in a nap somewhere today in between babysitting the nephew and taking my mom home from the doctor. Either that or I’m going to bed WAY EARLY. If not, by tomorrow I’ll be back into manic-sleep-deprived mode, I’ll be frantically throwing things away, rearranging furniture, painting walls and accusing poor The Guy I Live With of all sorts of atrocities he isn’t remotely guilty of because I can’t think straight or rub two brain cells together.
Things I’m glad about this week? Friday we had the opportunity to go out with some friends to see a band at a place and we stayed up way to late and ended up at a diner at 2am for breakfast (where I got potato skins. All I can say is DROOOOOL.) and crashed just in time for Bugaboo to wake up at that precise moment but all is well because then he slept until 10am. And it was totally worth it going out, having fun, dancing until my feet hurt and eating diner food at 2am because I haven’t done that in about fifteen years. And I’m not likely to do it again for another fifteen. Or so. Or never again. Yep. No regrets there. Also? I owe my brother big time for dealing with the Bugaboo and staying up until 2am so his lame sister could get her dance on.
Meanest mommy ever. I made my kids get presents! BOO!
Then we went to bed at 10pm on New Year’s Eve because we’re exciting people and live a life of danger.
Happy New Year, y’all. Hope 2012 is a year full of win. You know, if the predictions are wrong and we make it to 2013 and stuffs.
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