Epilepsy

Hey, epilepsy...guess what?  I hate you.  I hate everything about you.  I hate the sneaky way you enter people's lives and wreak havoc.  I hate that you have had the ability to tear families apart, that you have caused parents to be unable to care for their own children.  I hate that you claim fathers, mothers, sisters, brothers, and friends as your own.  I hate the look you leave in the eyes of the most beautiful babies.  LEAVE THEM ALONE.  I especially hate that you have done these things to MY son.  I hate that you chose him and not me.

But, unfortunately for you, I realized something yesterday.  You are a coward.  You think that you are choosing the weak.  You think if you attack the "small" and "defenseless" that you will have a better chance of destroying lives.  So, that brings me to a question. How's that working out for you this time?  I believe you are discovering that you may have messed with the wrong dude.  Despite all your crazy antics, and attempts at keeping him down, MY son is still going.  And in case you haven't noticed...he's kicking your ass.

Hundreds of seizures plague him every single day, all day long.  We give him medications to stop/control them, but all they do is make his muscles like jelly and his eyes appear as if he's been drinking heavily.  However, yesterday he stood in his walker and walked all the way down our hallway completely on his own.  I'd like to know what you have to say about that?  My guess is probably not too much.

You see, you may have actually had more luck attacking me.  I am fallible.  I bend and sometimes I break.  I cry and ask why.  I fight to the point of exhaustion and then I step away for awhile because I can't take it anymore. I have had thoughts of seeing you, personified.  It wouldn't matter if we met in a dark alley or in the middle of freaking Times Square.  I would stab you straight through the heart, twist the knife in further, and NEVER LOOK BACK.   But, you didn't choose me, did you?  No, you decided to go after my baby.  You thought that you could take over his life and claim it for your own.  How's that working out for you?

You tell him he can't, and he does.  You tell him to slow down, and he beats your ass to the finish line.  You give him every reason to give up, to back down, and he JUST GETS STRONGER.  You will NOT beat us.  You will NOT win.  He is teaching me every single day.  So you see, your choice may not have been the best one.  It will take some time for ME to learn how to fight like Superman, but my son is already there.  He battles you every day...and wins.

Predictive Text...What the duck???

Somehow, I'm a married woman with four children, I pay taxes, have a driver's license, and can cut my own meat, but my cell phone will NOT let me text certain expletives.  Here's the thing:  I'm over 18, over 21 in fact (although only by a few minutes) and I'm currently allowed very few vices.  I don't smoke, I take in absolutely NO caffeine, and I don't drink alcohol (this last one is absolutely not by choice. In fact, I'm making a list of beverages to try/slam when I'm able).  So why then, won't my phone let me enjoy my one (yes, only one) vice?

If I want to call someone an asshole, that's what I'm gonna say.  But predictive text feels that "ashore" is a more appropriately, text-worthy word.  I disagree.  And yes, I assume most people use the contraction "he'll" from time to time, but let me just tell you, my little android friend, a good majority of the time I mean HELL.  Get over it. You're a machine.  Except profanity, or we may need to part ways.

I have realized that, after awhile, the predictive text feature starts to realize what words are used most often and begins using those regularly.  This feature is helpful, but, (like men) every time you get a new one you have to retrain! My old phone and I were becoming quite chummy and then along comes Christmas and all "he'll" breaks loose.  I tried to type the word "get" yesterday and it came up with "heterosexual".  Great, even my phone is a homophobe.  And of course it isn't comfortable with my rather extensive curse-word vocabulary.  So, I guess I'll just spend the next few months convincing my new phone that I absolutely DO NOT mean "duck."

Pinterest Addicts Anonymous

It starts out interesting and fun.  It becomes a challenge.  Soon you are feeling yourself pulled into the vortex.  You wake up thinking about it, and go to sleep at night anticipating the next day's findings.  It's an addiction for which there is currently no patch.  You guessed it...it's PINTEREST. 

Seriously, what the HELL is wrong with this website?!?!!?  There you are minding your own business, perusing the internet like any normal person and all of the sudden some hidden force sucks you in and leaves you begging for more.  I mean, THIS is why my house isn't clean and my kids are necessarily "fed" when they should be.  It isn't my fault, it's this damn website.  It's like a virtual form of ADHD.  Do you wanna look at dresses?  No, room decor, no wait, apple desserts, no, inspirational quotes, no, crafts for kids, no, squirrels!!!!  You don't even have any real attachments  to squirrels but you have to look because it's THERE!  AAAAHHHHHHH!!!!

Not only is it addicting, it's also completely terrifying!  I mean, there is so much PRESSURE.  First of all, I keep getting emails that all of these people are "following" me.  This is creepy for two reasons: A) I have no freaking clue how to "pin" anything so I have no idea what it is they are following, and  2) even if I ever DO figure out how to pin something, will it be worthy of my followers?  Am I likely to lose people if my pins are lame?  I imagine I'll eventually get emails that say,  "these people are no longer following you due to excessive lameness."  This would be a serious blow to the ego.

It's not that I don't have things that I'd like to pin, but every time I try to, some little window pops up and says that the item I've picked cannot be pinned.  At first, I was pretty sure that there were just some compatibility issues between the item being pinned and the website.  Now I'm wondering if this is some sort of elitist "crafty-makes all wholesome meals-showers regularly-and knows what day it is without asking her children if they have gym class that day" mom site. And perhaps my choices do not fit that motif? How odd.  Maybe all of my ideas aren't what the yuppie mom would consider good, wholesome fun, but I imagine someone somewhere would appreciate my ideas.  For instance:

1.) Feed your kid an orange for lunch but don't put it on a plate.  This way you get points for giving them a fruit full of vitamin C and the smell that lingers from the mess they make on the table will give your house that "just cleaned with Orange-glow" smell.

2.)  You don't really HAVE to give your baby a bath everyday.  Just keep a big bottle of lotion around and when people come over, smother him with it so they THINK he has that fresh baby smell.  They'll never know the difference and they shouldn't be that close to your baby anyway...it's cold and flu season.

3.) Or how about a shock collar for husbands?  Every time they ask where something is, and the wife finds it in exactly the spot that it should have been, she gets to give him a quick shock to remind him that she has better things to do with her time than look for his shit.

4.) And what I really need is some sort of protective shield for my computer screen for when I see those inspirational quotes with some 100 pound, blonde bombshell exercising her way to perfection.  Because my first reaction is to throw a dart at her head.

My name is Shannon Zanger, and I'm now three minutes without pinterest.  For the first few seconds the twitching was unbearable, but I quickly found the remedy on...oh, shit.

Dick and Jane Never Saw It Coming

I asked my 4 year old to spell "cat" yesterday.  I do that every once in awhile during the day to make myself feel better.  You know, we can't go out and play with other kids, and most of the time I'm too tired to do anything really great with her during the day.  So, I throw an "educational" question at her and see how she fairs.  It fulfills my good mom status.  She spelled it correctly, and so I asked her another one.  Then I realized that she was sounding out the word in order to spell it.  I said, "Morgan, if you can spell, you can read." I got out our old standby, the Dick and Jane book that my grandmother gave us when we started having kids.  She said that it was her textbook in school, and it's how she learned to read. 

I turned to the first story in the book, handed it to Morgan and watched as she sounded out the words and read her first book.  At one point in my life, I may not have mentioned this to many people.  I would have told family and close friends.  I would have considered retelling the story over and over to be "bragging."  I'm different now.  And you bet your ass I'm going to tell everyone I know that my little girl has learned how to read.  Do you know what changed?  I now know that milestones reached are to be celebrated.  I know that I had very little to do with the fact that she is reading.  Sure we read often to our children and we work with them when we think about it.  But, I had absolutely NOTHING to do with the fact that she was dealt a lucky hand.  Her brain works like it's supposed to, and she hasn't had to overcome any obstacles in her young life, save the few skinned knees we've fixed with a kiss.  She can hold the book on her own.  She has the ability to focus her attention long enough to learn new words.  And yes, she's very smart, but she's also a very lucky little girl to have been given the tools to read.

I watch as she sounds out the first few words.  Her mouth moving, her eyes shifting from the page and then up at me with a look of uncertainty.  And then, that smile and look of recognition as she realizes that she has just correctly read the word, "funny."  I laugh at her white-knuckle grip on her new favorite toy as she turns the pages faster and faster. Every once in awhile, she looks up at me, her eyes shining and she's smiling at me as if to say, "Can you believe I'm doing this?" 

And I can't stop hugging her, can't stop from telling her how very proud I am of her.  I now have three children who can read, and I was absolutely enthralled when my first two children showed me their new trick.  Somehow this third time around is even more precious, because it reminds me that although I'm one of those "special needs" moms, I'm also just a regular old of-course-my-child-can-read-mom.  Very few things in life will give you a thrill like watching your child learn how to read.  And it's true, Dick and Jane never saw it coming, but I'm happy to say that Mommy did!

Mickey Mouse Klubhouse

We have recently discovered that episodes of Mickey Mouse Clubhouse drastically decrease the number of seizures that our son has on a daily basis.  So, naturally I have several VERY important questions.  Such as:


What happens if Micky accidentally chooses the WRONG mousekatool?  I mean, is he just screwed then?

And, who knew there were so many different uses for an elephant?  He can make those bastards do anything!

I also wanna know why they keep including Pete in all of their parties and games?  The guy is an asshole to them most of the time, and still he ALWAYS gets an invite.  I know, I know turn the other cheek and all of that bull, but seriously the mouse can't go anywhere without that big oaf demanding payment via food of riddle solving.

And, of course the question that everyone has been asking for years...why is it that Pluto has to be Mickey's barking pet crawling around on all fours, but Goofy (who is obviously a dog too) gets to be Mickey's friend, the silly, talking biped?

Go ahead and make fun of me for my vast knowledge of the Mouse, but let me assure you that I would MUCH rather watch 30 episodes of Mickey Mouse Clubhouse than 30 seconds of one of those stupid Kardashian shows.  I mean, come on people, what the hell?  First of all, their first names both start with the same letter as their last name?  Well, isn't that Kute?  Or perhaps, just Koincidence?  Anyway, I wanna know what those parents did when their kids were born.  I'm guessing it was something like, "Awww, isn't she beautiful? I've got an idea, when she gets older let's buy her some gigantic fake breasts, tell her that her looks are the only thing she's got going for her, and put her on a television show whose express purpose is to make Americans dumber with each passing second!"  Yes, so sweet.

I mean, are we really SO bored that we've resorted to watching rich, spoiled people make stupid decisions?  I tell you what, those Kardashians could learn a thing or two from the Mouse.  Sure, he's probably had a few indiscretions where Minnie was concerned.  He may have stepped away a few times in the past 50 years and had a little fling with Daisy.  Who could blame him?  She's a very attractive duck.  But then there would be the whole "mixed marriages" issue.  The point is, he can have these mishaps in life and not broadcast them to the world.  He knows we don't want to hear about his screwed up personal life.  And do you know why?  Because the Mouse has class, that's why.

And as for Kourtney Kardashian (Or Kiki, or Kookie, or whatever the hell her name is), I've never seen HER do anything cool with an elephant.

A Day In The Life

Pack the bag for the road trip.
Get up early, and cry as your baby cries because you can't nurse him.
Try to give him water from a sippy cup when all he wants is to cuddle up next to you and go back to sleep.
Get on the road and make small talk because both of you are scared, and mindless chatter makes the time pass more easily.
Follow a nurse to the room that will start everything, and absently clutch your baby a little closer to your chest just in case someone tries to take him before you're ready.
Go through his awful medical history AGAIN.
Discuss how "routine" this will be, while simultaneously reading the list of possible risks that "never happen."
Marvel at your baby's disinterest in the IV being placed in his arm, and smile politely at the nurse who compliments him on being such  "good boy" and all you can think is  he's been through so much that puncturing his skin with a needle is nothing.
Hold him while they administer the medication that puts him into an instant state of deep sleep.
Hand him over to a stranger (and hope, silently that for just these two hours that this person could love your baby as much as you do.)
Walk. Out. Of. The. Room. And immediately understand the saying, "the decision to have a child is to accept that your heart will forever walk around outside your body."
Go to a waiting room and pretend that you are interested in the magazines or the latest internet story.
Pace back and forth and back and forth and back and forth.
Steal glances at your spouse every once in awhile and catch him doing the same thing.
FINALLY the pager buzzes and you get to go back...

But WAIT!  What does "back" mean?  What are we going "back" to?
Sure it was a "routine" test, we don't know the meaning of that word anymore.
We know what it's like to watch your baby slip away from you.
What if after I make the walk down this endless hallway, the baby I see is not mine?
What if he doesn't make the scrunchy face anymore?  What if he doesn't remember our games we play?
What if something went wrong...again?
But, no, this is crazy.  It's a ROUTINE test.  You're making it all up in your head.  But, wait...you look at your husband and see your fears mirrored in his eyes.
Deep breath...there he is...and there's that SMILE.  
It's MY baby.  HIS eyes, HIS smile, HIS reach for Mommy.
Thank you, Thank you, Thank you!!!
Hold him to your chest and realize how very lucky you are in that moment.
And that moment is all we need, because it's all we will ever have.

Special Needs Family

What do you do when your world turns upside down?  When one morning you wake up and realize that black is white and stop means go? How are you supposed to feel in that moment when you learn that sometimes things don't go just as you planned?  That dreams change, and lives shift.  That finding out you are pregnant doesn't  mean that you get to have a baby.  That having a child may not always mean what you think it does. 

We have this preconceived idea of what parenthood should look like without even thinking about it.  Life can be so obliviously happy and carefree when we get to assume certain things.  For example, we assume that having a baby will be "difficult" but at the same time we have visions of bassinets and bicycles, prom dates and graduations.  We figure we can handle the "difficult" parts, such as sleepless nights and getting them to eat their vegetables, because we have these other good things in our future.  These assumptions are important because they are what make life great.  They are what keep people hoping and living for tomorrow.  But, these are also the things that are lost and mourned when life takes a turn that you weren't expecting.  Assumptions are luxuries, and ones that you won't find in the home of a "special needs" family.

I say family because it's not just one of us who has special needs.  It's true that our youngest son has the challenging medical history, but he isn't the only person affected.  We have other children, and their needs matter too.  It's vital that we know the extent of our son's medical needs, his medications, his therapies, his appointments.  But it is equally important that we remember that today is "red" day at preschool, or that our oldest son wants to be reminded to take his Papa's guitar for show and tell.  We must also  be aware that while other children are giving thanks for their friends and families that our 6 year old daughter gives thanks for hospitals and doctors because they "saved" her little brother.   My husband is just like any other man wanting to protect his family and control any situation that may cause us harm.  His needs are knowing that we appreciate everything he does for us, and helping him to realize that it takes all 6 of us protecting each other,  that no one member of our family can do it alone.  My needs are relief from constant fear, and the realization that my life cannot be lived for someone else.  As much as I love my son, I need to be reminded that my life matters too.

Special needs families don't think about where to take their next family vacation.  They think about IF they ever will, or IF they'll all be there to enjoy it.  They remember what it was like to dream about bicycles and prom dates, but they now jump for joy at the sight of adapted walkers and a single look of acceptance.  Their diaper bags are so full of medical equipment that they find they have no room for diapers. However, despite the loss of assumption, the shift in dreams, the change in life's path, I think you will find that special needs families are genuinely happy.  We have a greater understanding of what it means to cherish the moments we are given.  We see the futility in planning one's life, and instead learn to roll with what we've been given.  This is not to say that there isn't anger and pain along the way, it's just that when our lives turn upside down...we simply learn to walk on our hands.