Thursday, June 2, 2011

Dear Murphy, as in creator of that blasted law!

I thought you had moved on.  I thought you had gotten the memo that I want nothing to do with you.  It is bad enough that I have the big blunders I no longer need all of this little stuff....because let's face it, the little stuff is what really gets us.  We can trip over a speed bump and jump up and shake it off, but when we step on a thorn we are limping for days!

I seriously do not know what I was smoking last night (I know really REALLY bad expression) to think it would be good for me to take my kids to "Samantha's" with me.  Kids, Budget, and Bulk-Super-Store on a very busy Thursday afternoon (WHY WAS IT SO BUSY TODAY?)  do not mix, wait let's repeat that DO NOT MIX!

This morning, we woke up, had breakfast, had Liam escape into the front yard 2 times, and looked for my cell phone for 32 minutes only to discover Liam had put it under the dining table under a blanket....

Not only did I fail to realize before entering the store that they are unlike BJ's (my favorite favorite East Coast Bulk Store) they do not accept COUPONS!!!  So I had to scratch a few items off of the list and add another shopping trip to my to-do's....

Then as we begin shopping I realize "crap I forgot Gracie's seizure helmet" and I say it out loud so Liam being that cute little stinker that he is starts singing "Crap crap crap, mama forgot hell mitt....Crap Crap Crap mama forgot Hell"... and finally it ends up "crap crap crap mama hell"....for all the world to hear!  And we have only been there for three minutes, I am doing great!

So we get to the paper plate aisle.  We normally do not shop for paper products, other than TP.  I use cloth napkins, paper towels, etc. to save money and resources.  But it is a birthday month and they will come in handy.  So I am evaluating prices and I hear Violet yell "Oh no look at Breya and Liam" and from the cart they have reached into a display and taken apart several boxes of plastic "paper" plates that are pretty colors.  Now on my defense I will say that to open said boxes all you had to do was hold the plate, not the box and Voila!  So I fix the plates and move on.

Then I run into a very lovely lady whom my family and I met on our retreat at the end of March.  She brings a wonderful calming and loving atmosphere to our trip and I thank God for that angel!  Then I round a corner to and come face to face with "my arch Nemesis"  Just joking, I don't have one but that sounded very fitting.  However, now she could be lol.  I run into "lady I will not name" who says Oh dear you have Avagrace out without a helmet, I thought she HAAAD  to have one at all times" she says with a very sly and sarcastic manor."  This inspires Liam to start his wonderful song again and she looks at him and says "my my, what IS he singing"  so my three little ladies chime in the words and I sigh and say "just hand me my award now, as I force a huge smile and move on without saying goodbye."

By this time we have made it to the samples and my kids are happy again.  I grab a few things that we need and move on as fast as I can with my mondo load that has Liam and Breya in the front (I LOVE those double seat carts that do not have huge plastic vehicles in the front) and Gracie surrounded by boxes so she will not seize and hit the concrete floor.  We get to the "butta" section as Liam starts singing a new song that sounds like profanity and the kids see cheesecake samples.  I tell them to be patient as I grab some items and just as we pull up to the cheese cake table the lady puts up her sign and shoves the remaining samples into her box and just about skips away saying "sorry I really need a break, and that is a lot of kids."  UM YA THINK????  The tears start and the stares from onlookers are burning through my flesh.  Liam and Breya start fighting because they are mad and Liam pulls Breya's hair, she screams her blood curdling scream and smacks Liam right in the face so he screams too.  I grab both of them and drop my calculator which zeros out our total...that I cannot for the life of me remember now.

I start singing the wheels on the bus verse with mommies and say "the mommies on the bus say sh sh sh.."  it doesn't work so I try "the mommies on the bus say apples are purple." and my kids start arguing with me, with no tears.

We get to the apple section and Breya grabs a bag of apples from halfway down the stack because after all that is right at her level (she is walking now so Liam will not yank her hair again) and says "see they're not purple" but before she can finish purple about 2 dozen bags fall from the shelf.  She looks terrified and I start sweating.  "well guys lets clean this up,"  "Yeah lets keen up"  Liam says as he dives onto me and out of the cart.  At least I am now a good catch.  Gracie looks at the bags and says "at least they are in bags, if she did that to a stack of real apples they would have rolled everywhere"  Laughter follows!  Phew, their mood swings are giving me whip lash.  No wonder I am always so tired.

We get to the last section, bread and nuts, when BreyaBreya cries, and I cry...ok maybe not yet....  Finally a mom with one girl who is about five years old comes out and smiles sheepishly.  I bite my tongue and hold the door so I can keep Liam in our cart full of food without taking unpaid merchandise into the restroom and still watch the three girls.  When we are done there I realize that I forgot the dish washing soap and we head to the far side of the store.

We are nearly there and Breya darts in front of an old man in a power chair who slams on both the breaks and a horn (REALLY???  A HORN????  ON A POWER CHAIR???)  Breya stops dead in her tracks like a dear in the headlights and he ends up tapping her leg.  He starts yelling and cursing to keep control of my BLEEP kids and to get a BLEEPING leash and if he were their dad he would take his BEEP BEEP belt off right now and really teach that brat a lesson.  "Excuse me sir.  She is three and did not see you coming.  There was no red light.  She is not a brat, please keep your names to yourself."  He looks at me shocked and says "well I never"  and I think "well maybe you should" and he moves on.  The tears die down, we get the soap and go to check out.  Just as we ring our $308 total when I thought I was going to spend $250...the register does something weird and she says that the receipt didn't print because I wasn't charged.  She has to call a manager because she is afraid that she will have to re-ring everything.  The manager comes over and says that my order was forced into suspend, which means it is on hold for payment.  She brings it up and runs my card through.  My card is denied.  I say, something must not be right, it must have already paid for it, that is the only thing I can see.  The manager fiddles around and says, no this order was not paid for you will have to call your bank.  So she suspends my order again, the line behind me is huffing and shifting their weight all while glaring at me again.  Breya and Gracie are fighting about who is sitting next to Violet on the dirty floor and they keep getting in every body's way even though they are sitting off to the side.

I step away from the register and use my nearly dead cell phone to call the bank who confirms that in fact I already paid for my groceries.  The manager comes back over, talks to the bank lady.  Shuts down the line so even the people who already have their food on the conveyor belt have to take it off and go to the end of another really long line.  The manager does stuff on the computer.  Closes out the drawer, and finally says, oh yeah here it is, and prints me a receipt.

Finally my very hungry kids and I go to the snack bar, and wait for our pizza to be ready, because naturally they are all out of cheese pizza in the ready made hot case.  We eat, Liam spills my drink, Breya drops her pizza crust, Gracie has a seizure, Violet falls off of her seat and cries, and as we are cleaning up to go I collect the four pizza slices that are yet to be eaten and put them on a plate for them to eat when we get home because I was so completely ever so ready to go home!  I ask Violet to throw the trash away but not the left overs because we would eat them at home.  She says ok and as I get everyone situated I turn to get the left overs when I see Violet next to the Nasty and taller than her trash can, both arms in up to her shoulders, watching as she drops the plate of left overs into the trash.  I yell "Violet No, that is our leftovers" before she lets go completely but she is so startled the dirties trash can lid ever pinches her arm, smacks he in the face and knocks our food into the trash.  "That is disgusting Violet, first you don't stick your arms into a trash can, gross!  Second that was the pizza we were taking home."

We had an audience of stares again.  I grab my receipt and head to the car with my kids in tow.

As I am walking back to our car we pass several open parking spaces and get to ours, strategically parked in the back of the lot right next to a cart return.  I go to push our cart next to the car in an open spot and an older man in a vintage sporty Volvo sticks his head out of the window and says "could you move I want to park here."  HERE, not in any of the other 20 parking spots around us.  Not the one right next to where I am standing or even on the other side of the cart return....right here.....I move.

I get the three girls into the car, they are buckled and calm.  I slowly unload with Liam in the cart still.  I pick up our bread and didn't notice that the sticker from our raspberries was attached to the bread bag.  So as I put the bread in the car, all of our raspberries fall to the dirty cement ground.  I start to scoop them up when I hear Liam say "here mommy" I start to look up and a box of strawberries comes crashing down on my head which then fall on top of the raspberries and smashes them!

I take a deep breathe.  Salvage what I can and put Liam in the car before finishing my loading.

All finally seems calm.  I put the last item in the car, and the no longer heavy cart starts to roll away ever so slightly.  It hits a dip in the parking lot (or should I just say a crack because it was only about 12 inches long) and my soda, my cherry coke to be exact, falls over, the lid comes off, and all but a sip is now on the concrete.  I push the cart into the return, get into my car, call my husband to tell him I am slightly insane after today, and I head home.

So oh dear Mr. Murphy, you can take your law, and leave me alone, please!

All the while I am smiling and singing Francesca Battistelli "This is the Stuff"

And now my friends they are napping!

Tuesday, May 31, 2011

Living with Lennox-Gastaut Syndrome

As the title suggest I figured it would be good to talk about some of the things in our life that are bringing us to a "new normal."  I by no means am an expert nor have I lived through this long enough to know much at all.  All I know is what I see, do, and learn each day. 

Six weeks ago when we left the house for any amount of time the call would be for sippy cups, diaper bag, and on the very rare occasion Gracie's seizure bag.  Now, it is still sippy cups and a diaper bag, but also Gracie's helmet, Emergency Meds, and the Seizure bag.  Not a huge increase in stuff, but still more things to remember.

Before we even left the hospital in April we had to have a new car seat for Avagrace.  Prior to starting the ACTH injections she was 52 lbs.  When we left the hospital (and two weeks after the first weigh in) she was 65 lbs and some odd ounces.  The car seat had to have a five point harness to keep fer from "folding in on herself" in the booster seat with over the shoulder seat belt that we used with it.  The seat we chose is awesome because it keeps her in a five point harness until 85 lbs.  It was a pretty pink which appealed to her despite the fact that she was going back into a "baby seat."  We just told her she was in a race car drivers seat.  :)  Here is a picture and a link to the seat...

Britax 85  Ok I cannot get a picture to load so I will try later. 

Her seizure bag is this:  A book bag with a warm, soft, and large blanket.  She has two blankets that we rotate.  One is a queen size flamingo pink thin minky fleece material that we got from Target.  The second is a twin size, thick minky fleece in pale pink and it is so thick it is quilted.  We have these because she has a hard time regulating temperatures especially when Post Ictal.  We also have her favorite snacks including easy to chew ones like pudding.  If we have to go to the hospital for her seizures she is always starving when she comes around and there is never enough of what she wants or can eat.  We have water bottles, a few small art activities in case we are in hospital for a long time, 2 Goodnights and two changes of clothes for the vomit and voiding problems that come from seizures.  We also have a two day supply of her medicines in case there is none wherever we are.  

So, I hope this helps.  I am going to end here and will write some more another day!  Blessings to all!