Sunday, November 29, 2009

Aye, me.

So, when you have a little guy with special needs, especially when dealing with neurological disorders, you're pretty much always looking for "stuff". Every little thing that they do, if it is at all different from their "norm", is scrutinized, and analyzed, and weighed and measured,




One thing I am always on the lookout for is sensory stuff. Anytime Remy shows any type of fear, or discomfort in a situation, my mind wanders to sensory disorders. It can actually be sort of all consuming. Exhausting, even. And so, it goes, I have begun a new obsession in the world of "Does Remy Have a Sensory Disorder?". He is TERRIFIED of the shower. It is super weird. The sound of it throws him into a frenzy, and he can't rest until he closes the bathroom door and hides in his bedroom. He is a complete spaz, and it FREAKS ME OUT. Now, he is not afraid to take a shower with me, but alone (I often would bathe him on the shower floor, he liked it, and it was just easier)...not happening. During a regular bath in the tub, he even started trying to climb out all together. Obviously, I immediately jumped to the conclusion that he had developed some sort of water aversion. This would, no doubt, make bathing very difficult. Panicky moms, always come up with the best solutions...

Kitchen sink bath! Of course! He wasn't so sure at first:

But he started to warm up to the situation a few minutes in.

We even clapped and sang a few songs.

Now, we have a perfectly doable bath time routine with no tears.
.....and no fear of water either.

Saturday, November 28, 2009

Baby Legs!!!!

Hey everyone. I was hoping that you might want to help an A.MAZE.ING family with an A.MAZE.ING cause. Click on the information below, and learn a little bit more about how Gavin Owens changed lives, and how his parents are holding up the tradition!The Owens family is an inspiration to families of children with special needs, and my hope is that they will be the same to you.

Monday, November 23, 2009

....a mullet?

NO! Not his hair! I know what you were thinking...but just forget it, these locks are no a mullet! They are a beautiful, luscious waterfall of golden waves, and don't you forget it.

God bless 'em! Kids and their ridiculously hilarious word mixups. They make me want to cry. So, here we are, making breakfast, and beginning our daily ritual of readying ourselves (you remember "the list", right?), when Matai comes up with the best one I have heard in quite some time.

Me: "Hey guys, what do you want for breakfast?"

Brodie:" I don't know, what do we have?" (EVERYDAY! THE SAME THING! HE KNOWS WHAT WE HAVE!)

Me: "You can have waffles, or cereal. What one do you want?"

Brodie:"A waffle!"

Matai: "I want fruit loops!"

Me: "You want fruit loops Matai? Do you want milk on them?"

Matai: "Yeah. And I want them in a mullet."

.....Hm. A mullet? I can't even begin to guess what a mullet might be. Well, he is four, perhaps he can explain.

Me: "What in the world is mullet?"

Matai: " You know, the kind of thing that you drink your coffee out of. A mullet."


Really? How cute is he!? Love him, and his totally cute little self. Days that start like this make me smile.

Friday, November 20, 2009

Brodie Noochies

Wow. Really, that is it. Just wow. I don't know how the essence of an adolescent girl can be inhabiting the body of my six year old boy, but I suppose that maybe stranger things have happened. Or maybe not. Regardless, this morning has been dubbed, the morning from Hades. It all started with "the list"....

I try really hard to give my kids a sense of independence. I think at their ages, they are perfectly capable of doing most of the things needed to get ready in the morning. On the other hand, I also need a bit of control, surprise, so I have implemented the list system. Thanks to the amazing women at the ISD, I have these little laminated squares with different tasks on them. I made a poster for each child, which they decorated, and hung them in their in their room. There is a spot for the things that they need to DO, and a spot to move the squares over when that task is DONE. I don't care what order said tasks are done in, I just ask that they are done in time to leave for the bus. Well, included on this list is the task GET DRESSED. Parent's....if you are going to put your child in charge of dressing themselves, be sure that clothes are laid out the night before, so as to avoid a situation like the one we had here this morning.

As I am walking out of my own bedroom this morning, I see Brodie, sitting on the couch, wearing a pair of track pants that are about two sizes too big. These were a hand me down from a cousin, and have been used as pajama pants thus far. On this day...during this week when I am working very hard to get up at 6 am, so that I can be ready for the kids, and focus solely on them, he decided to wear THOSE pants with a shirt that in no way, shape or form coordinates with them. Not a huge deal, I guess, but I just don't want him wearing 1. pajamas and 2. pants that have about a 99.9% chance of falling down before the end of the day. I say to him.
"Brode, you can't wear those pants to school. They are pj's."

He says to me, "No they aren't! I got these from my cousin! I want to wear them!." Please make not of the exclamation points. For whatever reason, he is very passionate about these pants.

"Brodie, they are pajamas because they are way too big for you, so you can't wear them to school."

"They aren't too big! See!" He really just pointed to the pants, proving absolutely nothing one way or the other.

I took a minute to think about this. Where do I take this conversation. Do I force him to change his pants, or do I try to talk him into just changing his shirt so that he at least matches when his pants finally do fall off? I decide that he can make a choice. I am really big choices. I truly believe that a child will feel much more independent and capable if they are able to make their own choices. I say to Brodie:

"Brodie, you can either wear those pajama pants, with a different shirt, or you can keep that shirt on, and change your pants. Your outfit doesn't match."

"I don't care if it matches! I am wearing this! I'll never, ever change my clothes. Never!"

Hmmm, I am now caught in the middle of giving up and letting him win or standing my ground, so that he knows that he has to obey. Well of course, I stand my ground. I say to that crazy little kid, "Brodie, if you choose to keep that outfit on, than you are choosing to loose a privilege today. Do you understand that if you wear those pajama pants and that shirt, you won't be able to play the Wii. It is your choice."

Complete meltdown mode is full force. He is grunting, and growling and howling and all in all just carrying on like a lunatic. But he KEEPS THE CLOTHES ON! I send him to the car, where this unbelievable display continues all the way down to the bus stop. He becomes even more and more irritable as the wait for the bus drags on, and so I start to discuss it with the rest of the bus stop moms. (By the way, at this point, I have lost my patience, and really needed to calm down myself) He hears us talking about him and gets even more agitated. One of the little guys, who is a complete sweetheart, and was in to way being mean says, "Brodie is crazy today!" An absolutely accurate observation, so I say, "I know, he is." Well apparently, that was the last straw. He ran to the van, jumped inside and hid in the back.
Of course, immediately, the bus turns the corner and it's lights turn on. I run to the van and tell Brodie that he needs to get moving, and he is TICKED. If it were possible for smoke to actually come of someones ears, it would have happened. He starts toward the bus, gets about 20 feet away from it, and turns around, HUGE tears in his eyes, and just stares at me. ~sigh~ He is heartbroken. The bus driver looks right at me, closes the door, and drives away! (this particular issue may be saved for another post, but really?! You're just going to drive away!? No warning?!) So, we get back in the car and his meltdown continues all the way to school. I had him come to the front seat when we got to the school and we talked things out a bit. He said that people had hurt his feelings, and it made him sad, and that he doesn't wan't to go to school when people are mean to him. My snotty nosed little boy told me that people at school aren't very nice to him, and he doesn't want to go any more...
How can a six year old break my heart? I wanted to tell him that he didn't have to go to school, and that we could just go home and play and watch cartoons, and have fun. But life doesn't work that way, does it? I had to talk my little guy down, and send him into that school....




~sigh~ Does it ever get easier? Will I ever feel ok about stretching him, and forcing him to experience new things? Will I ever be ok sending him into a building full of people who might not see what I see? People who might not understand just how perfect, and bright and beautiful he is inside? With people who don't know what he has had to sacrifice by having a sibling with special needs, and that he missed out on his mom and dad for weeks at a time and just needs a little understanding. He is dealing, and growing, and changing and still.....he is amazing.

I went to his classroom to check on him and bring him a book. He was sitting in his seat, perfectly still, listening to his teacher (in the outfit). Gosh, he is a good kid.
Mrs. Turley sent him out and he smiled at me on the way out, licking the snot off of his upper lip.

"Are you doing ok Brode? Is your day getting better." He gives me hug, and holds on a little longer than he usually does.

"Yeah I'm alright. I gotta get this book to the library, the cart is gone now."

Amazing, I'll be effected all day by what went on this morning. He, on the other hand, has already moved on. I love him. And today, I am thankful for his grace.

**Thanks for the encouragement today, fellow bus stop moms. It meant a lot.

Thursday, November 19, 2009

A thuk!! {Huh?!}

I've been getting up earlier lately. I made this promise, mostly to myself, that I was going to do things to avoid situations that can throw me into my typical irrationality. I decided that getting up at 6:15 would let me be ready when the kids get up, so that I can focus 100% of my time and energy on them. Great idea...right? I thought so. Well, Remy is absolutely foiling my plan. For the past few days, he has woken his crazy little self up at around 5:45. What? Really? And more importantly, why? I have no idea what the deal is, but man...I am so over it.
So, I let him get up. If I don't, his insane screaming will wake up the rest of the house, and an unrested is Brodie, is an evil Brodie. Well, I'm up, now Remy's up and he needs breakfast and meds, so I skip my own morning ritual and get to the work of motherhood. By the time that I am finish tending to Remy, the bear that is Brodie in the morning comes stomping down the hallway, by now it is about 7, and I really need to get moving, or else things are going to ugly, fast. I give Brodie his clothe, tell him to get dressed and run into my own bathroom to get ready. I really only NEED 20 minutes, but I'm lucky if I'll get 10, so I get moving. About five minutes into my hellish hair straightening routine I hear through the monitor:

"Ah. Ah. Ah thuck! Ah thuck!"

At first I completely ignored it, and chalked it up to Remy yelling with his crazy (though extremely entertaining) babbling. I go about my business and a few seconds later, I hear it again.

"Mooooom! Mooooom! Ah thuck, ah thuk!"

So.... maybe I should check things out? Ugh! Off I go, checking every room on my way through the house. Family room, no baby. Bedroom, no baby. Dining room, no baby. Kitchen, no baby. Wait! I walk around the island in the kitchen, and this is what I see:

Remy had pulled himself up into the top shelf of the lower cabinets and gotten himself stuck with his feet off the ground. He was STUCK! You may not be as excited at I am at this point, but what you need to understand is this: Remy got himself into a situation that he could not get out of, realized he was in trouble and called out a TWO WORD phrase that he came up with ON HIS OWN to get help! When I didn't come right away, he directed his ingenious two word phrase AT ME! He kills me. And I had to stick around to take just a few more:

I should mention that he gets into this cupboard on a daily basis. It makes me insane. This is what he does. He empties all of the clean dishes out of the cabinet, and puts them into the dirty sink, causing about two times the amount of dish washing. Not cool little man.

The only thing that was in this sink before Remy had his way with my dishes was the ceramic plate in the back, a pan and three coffee cups. The rest are all clean, and now contaminated with the disgusting dirty "dishness" of the sink. Thanks Remmers.

Wednesday, November 18, 2009

On closing the gap....

Of course, I would prefer that there be NO gap. That I were not, in fact, the mother of a child with special needs. A child that is covered in labels and orthodics and tumors and scars... Now, when I say that I wish I were not the mother of a special needs child, that in no way means that I wish I were not Remy's mother, rather, I wish Remy didn't have special needs. Remy's spirit, who he is, and and what he will be to world would be no different whether or not his brain was riddled with tumors and abnormal activity. I want to be clear on that.

Here we are though. And I must say, that life is beautiful. Today was Remy's IFSP (Individualized Family Service Plan) review. My little Rem-dog needed all new goals! His Cognition and his fine motor skills (based on the right side of his body) are in the 20-24 month range! This...from a boy who's prognosis was "moderate to severe mental retardation". Suck on that Tuberous Sclerosis! (And Infantile Spasms too!)

Tuesday, November 17, 2009

i'm afraid that this complacency, is something I can't shake

So I am looking for it. It. I am sitting on my couch, with my oh-so-lovely four year old boy while the Reminator is sawing logs in the playpen. I did NOT set the timer on Matai's video game so the odds of King Koopa's roar ending any time soon aren't in my favor. I should do that.....But then I have to stop looking, thinking.....dreaming. It isn't in the laundry, I promise you that. It wasn't in the sink either (however a huge mess of wretchedlystanktified dishes and chili residue, that was there), and as of right now, it isn't on the computer either. So....where is it?

Is it wrong to feel like I am not doing enough? No doubt, my plate is full. A house, an incredible husband, three amazing kids and friends that seem to have made just for me, but what am I actually DOING? I feel like in today's world, when a woman feels as though she isn't doing enough at home, the resolve seems to be finding a career, something with which she can contribute to the family with. Not me. I think my contributions are obvious. I love my family with a ferocity that I really can't put into words, and I am insanely happy. So what is my problem.

So, as I said...I have been looking. And I think I know what IT is. I have a broken heart. What I am looking for has NOTHING to do with what is within these four walls. My heart breaks for what is "out there". What is in the world, what I feel I can not connect with and can not control. My heart breaks for the broken, and the poor, and the estranged, and the addicted, and I don't know where to start.

So...I have been looking.

As fate would have it...I am starting in Haiti.

January 15, 2010 I leave for Dessalines, Haiti, where I will get to DO for people who do not have the means to DO for themselves....and I am terrified. Yeah, you heard me, terrified.

**Photo provided by Emily of Smith Gallery Photography from a trip that she attended in 2008.

Sunday, November 15, 2009

A Moment of Silence {for the curls, of course}

Oh, how I miss those sweet little curls. Those lucious, golden locks. I can only say that I must have had a brief moment of insanity the day I told Amanda to lop them off. It had to be done, but considering the facts I had to face those long 17 months ago, I can't believe I even had it in me cut Remy's hair.

I remember it like it was yesterday. I can picture the feeling I had in the pit of my stomach. That gnawing feeling, that somehow my little boy would look so different that I wouldn't recognize him. It was the day that I came to terms with the fact that they would be




No, not my sweet Remy. The only child that I have produced whom was able to grow hair before the age of two! Why? Devistation is the one, and only, word that comes to mind. When we took him to Detroit that day, I had accepted the fate of that sandy blonde head. You see, by then, it was just this beautiful meadow of blonde perfection (Both Matai and Brodie were both bald....forever it seems), and I was really digging it. But alas, his brain had to be on the fritz, and in need of some alteration, so before they could cut into his brain....first came the hair. I kissed that baby boy goodbye (tears streaming, of course) , and off he went. When I was reunited with my sweet boy hours later, he was wearing a little hat made of bandages, if you will, so it wasn't until a couple of days later that we noticed this (be warned, its a bit shocking):

They didn't take it all! They shaved what can only be described as a little roadway, along which they would make the incision for surgery. While I was excited to see hair, I was, in fact, a bit worried about how this hairdo would pan out over time. We doctored it for the next few months, determined not to give up hope that we would have a child with hair on his second birthday. Here he is a few months after surgery. Not so bad....right?

I had these terrible visions of him growing up and having this huge, thick scar that, of course, would part his hair into a horrifying clownish do, much like Bozo. I had to let it grow. Just to see what would happen...right? And so it went, that boys hair grew, and grew, and grew and became more and more delighfully amazing with each passing day. Not only was it cute, it was downright delicious. He was perfect, with his cheesy grin, his gigantic baby blues and those glorious curls.

Can I get a.....REALLY?! Really? Is anyone really this cute? Cuteness aside, I was enabling that child to the point of no return. I was treating a two year old, like a baby. My fault, I know, but something had to be done. Matthew and I went to Ann Arbor for the day, and arranged for the deed to be done while we were a good 45 minutes away. We came home to an exquisitely sophisticated little faux hawk, and I couldn't have been more pleased. Would you believe me if I told you the week that he got his hair cut, he took his first steps? I guess I knew what we needed, a fresh start, and a big boy do for little man to be able to do his thing.

I am happy to say, that though we did say good bye to the ringlets, the insane cuteness that IS my little Reminator is still alive and well. We don't need no stinking curls, but still....a moment of silence, please.

Thursday, November 12, 2009

stuck {in the middle}

Lets just say that I have a soft spot. Well, I guess maybe several, really, but one may be just a little soft spottier than the rest. You see, I am a middle child. I have lived and breathed "middle childness" throughout my life, and it is for that reason that I adore my Matai Jordan. In all of his insane, impulsive, irrational, emotional perfection......




I understand the frustration that comes with being stuck in the middle. All psychobabble aside, being neither the baby, nor the eldest leaves us with a sense of uncertainty. What exactly is the role of the middle child? I think it is this very question that sends middle children into the whirlwind of confusion that is, and will be, their life.

Can I tell you something? I am terrified. I am completely and utterly filled with fear regarding all things adolescent with my sweet little middy. I tell you with unwavering confidence that my teenage wrath was unparalelled, and I wish the exact opposite of what I provided to my parents upon myself. (They may have a differing opinion. I think the day that Matai smokes his first REAL cigarette or goes on his first tangent of how unfair the world is and that he is sick of being treated like a child, they may just throw a their own honor......for I was a shining star example of the angst ridden teen, in all of my glory. Filled with self pity and rage and every other unpleasantry imaginable. But this isn't about me.









For now, I will enjoy him. I guess that I can worry about the rest later.

Smoke Break?

I love Grease. I don't know why, it just makes me happy. I actually had the original LP soundtrack cover hanging on my bedroom wall when I was about 4. I would carry it around and make out with the picture of John Travolta (the cardboard around his mouth was all faded and weathered), and dream of being Sandy. You know....that last scene of the movie, at the carnival. Wow, she was amazing.

Black catsuit,

curly hair,

high heels,

and.... a cigarette.

A perfectly cool little stick of sophistication, hanging from her red lips. Oh, I couldn't wait to take up smoking. I would "smoke" anything that remotely looked like a cigarette. Sucker sticks, pretzels, straws, barbie boots, and even AA batteries (probably not a great idea). It got to be a huge problem for my mom. She hated it. She had to actually put a rule into place at our house that I had to smoke outside. So, as it was, her four year old daughter would grab her smokes, and head out to the front porch to get a fix. Crazy, I know, but I did it. I HAD to do it. I HAD to be like Sandy.

Fast forward about 23 years. I, now the mother, encountered a very unexpected problem with my own children. Let me just clarify, I am not a smoker. We do not smoke, and it really isn't on TV anymore, or even all that much in movies, but Brodie and Matai both have now decided to start smoking the things that they find around the house.

Last night, while eating their snack of pretzel sticks, they both proceeded to tell me that they smoke, and would not stop pretending with their fake little cigarettes. I told them that smoking was disgusting, and that they could get really sick from it, and that I really, in fact, wished that they would not smoke. Brodie informed me that "I am just fake smoking. It isn't even real." I told those ridiculous little boys that it didn't matter if it was a real cigarette or not, they were not allowed to smoke in the house because it could make other people sick. So, off they went. I sent them to the front porch, where they smoked for quite some time until I went out and took these:

Cute little boys, smoking cute little pretzel cigarettes, and thinking that they are......cute.

Here's to hoping this is a phase.

Wednesday, November 11, 2009 for BALL!

Oh, Remy. My sweet, crazy, drooling Remy. How I love him. Every little thing that he does seems to just throw me into this crazy whirlwind of emotion. Every new word, every new movement, every new song, every new game....all of it. I can't help but celebrate. I can only imagine what other people are thinking when I cheer, with unbridled pride and joy when my GIGANTIC two year takes a measly three steps to me. Measly? Perhaps you haven't met Remy:

Have YOU tried to navigate your very typically sized body with no motor cortex. Easier said than done. Well maybe not, I guess. It doesn't really sound that easy now that I think about it, but the point is, that he doesn't have any idea. He stomps around in his walker, experiencing the world in a vertical position, just soaking it all in. He is oblivious to the people who walk up to me and say "Is there something wrong with him?" "NO! I just thought the $500 piece of durable medical equipment was cute. Don't you?" Don't get me wrong, I don't mind questions...I love any opportunity spread awareness about Tuberous Sclerosis Complex and the amazing results that we have had from his Epileptic Resection Surgery (woot woot Dr.'s Chugani and Sood). I am thinking about a bumper sticker. Maybe it will say "I left my motor cortex in my skateboard helmet." Oh, or maybe "Chicks Dig Scars". Who knows. Maybe I'll never make one at all, but I SO want Remy to have a sense of humor about it.

About all of it.

To him, there is nothing that makes him different than other kids. He may, however, be developing some kind of a complex as we pour over him with cheers, and clapping every time he does something. As far as I'm concerned, he SHOULD feel amazing, and I will make sure that he does, every chance that I get.
When he is a teenager, and I am able to witness him drive a car for the first time, I vow to cheer just as I do today when he puts a bean into a container. When he has his first kiss, I may just have a violinist on standby, and I will be screaming like a fool. And I promise, there WILL be bull horns at his wedding.
That's all so far away from where we are right now. Right now, we will celebrate all of the itty bittys. When he makes up a new game where he give zooberts to his therapy ball, and wants to take turns bouncing our faces off of it, I will be proud. I will be in awe of the strength inside of such a little guy, and of all that he has overcome.

Ah! He is just the cutest, most amazing I right?

Tuesday, November 10, 2009

The Lone Turd

So, I often think of my life as a movie. It is this thing I have always done. I used to always picture a worst case scenario, no matter where I was, and then figure out just what I would need to do to get out of it. I would decide what could be used as a weapon, what the quickest escape plan might be, who I should take out first.....etc. You may find it weird, I think it is normal.
Anyhow. I got to thinking, with as eventful as this life of mine is, I should start naming my days like movie titles. This concept started last week, when something really strange happened.
I was folding laundry on the couch, and Brodie and Matai were in the garage with their date "workin' on stuff". I had just bleached the bathroom floor in the boys bathroom, so Brodie ran in the house, and into my bathroom. No big deal. When you gotta go, you gotta go, right? A few minutes later, he ran back outside, and went on with his day. About 20 minutes later, he comes back in the house (I am still folding laundry, unfortunately. I do this thing where I wash like five loads, and don't fold them, so it takes forever. Whatever, that is neither here, nor there). So he runs past me and then he stops, turns around, and squats down to look at something on the ground right outside my bedroom.

"Whoa, mom, there is poop on the ground."

This doesn't sound good "What, where? How do you know it is poop?"

He says "Right by your door, and I know it is poop because it is brown and it looks a little wet." He is so gross.

I say "Well who's poop is it?"

"Not mine!" says Tai.

"It isn't mine either!" Screams Brodie.

"I don't care whose it isn't, I want to know who's it is."

Now I have to go out and get Matthew, because of course, he needs to see the poop too. He says the same thing. "Whose is that?" He gets the same response that I did, and we are no closer to figuring out whose poop it is. More disturbing than the fact that we don't know who's poop it is, is that fact that is actually poop, and it is not where it is supposed to be. It is on my living room floor.

It is just sitting there.

It is all alone.

On my floor.

Last Saturday has been titled.....The Lone Turd

Monday, November 9, 2009

This Brings Us to a Segment We Like to Call, REALLY?!!!

So... this was my Monday.



Motherhood, it is a beautiful thing. Right? There are the tears, the snot, the butt and poop talk, the finicky eating, the throwing of food, the throwing of fits, the begging for toys, the pleading to stay OUT of time out, the foot stomping, the wall punching, the pushing, kicking, hitting and biting, the yelling, the name calling, the whining, the refusal to do homework, the refusal to put on socks, the refusal to TAKE OFF shoes, the apparent need to be connected to some sort of multi media activity at all times, the wandering child who always ends up in your bed, and the all around insanity that comes with the everyday of caring for kids (in my case, boys).

There are also those moments, that in spite of all that can go "wrong" in a day, and all of the things that we have to resolve for our kids, where we come out on top. When in spite of being taken to the outskirts of sanity, we can say "I did it." We can rest assured knowing that: Today, I was a good mom. I may have bent, but I didn't break. I may have wanted to cry, but I didn't scream. I may need a rest, but I am still going to read that bedtime story and say prayers with them. I might want to watch tv, but I am playing a game. I might want to get something done, but I am taking the baby to therapy....again. I am blessed no matter how hard this gets, and I am in control of my actions, as well as my lack of action. I am a mother, and I am a good mother.

** know who you are.

Sick Day...Wait...What?

I got scammed. Big time scammed. I got taken by the oldest trick in the book. One that incidentally took me years to perfect, and one that no six year old should have in the repertoire. Brodie went down to the nurses office, and got me to pick him up from school. No fever, no cough, no puke, no runny nose and no reason to leave the confines of Monroe Road Elementary. I am a sham of a mother, I know.
But didn't hear his side of the story.

Before we start, just look at the photo above. Who wouldn't believe every little word that came out of that handsome little turd's mouth? His whit, and his charm are what got him out of that nurses office last Friday and a round trip ticket to Toys R Us with Nina. Whit and charm....

Let me set this up. When reading the following dialogue, Brodie's voice must be read in a particular way. It adds so much to the mood...the ambiance of the story. You know how James Earl Jones can make you want to curl up and go to sleep? Brodie will make you laugh so hard you will cry. No lie. So....when reading Brodie's lines, you need to deepen your voice, and tighten your lips, almost like you are drinking out of straw. Not an average sized know that one from the old Tropicana commercials, where they stab the big fat straw into the actual orange. That straw. Slightly rounded, pursed, and sticking out. Yeah, you're trying it, aren't you?

So I go into the nurses office and I see my little punk, sitting on the same nurses office bed that I sat on so many times before (they are red instead of that grey blue color now), backpack in hand. I walk in and say;

"Whats up dude? You don't feel good?"

He replies, "No...I'm a little sick."

"Oh, really? What happened buddy?"

"I was eating lunch and it didn't digest really good."

Hmmm, he is blaming his digestive track. Possible, I guess, but it is what his digestive track is being accused of that is too much to handle. I say, "Oh, man, Brodie. What did it do?"

"Well it went up the wrong way."

Oh! He must have thrown up. "Oh Brode, did you throw up?"

At this point the nurse says "I think he has diarrhea".

I say "Did you through up?"


"Do you have to poop?"


I can't imagine that a six year old can know anything else of the digestion process. Basically, you eat, you poop, and if you get sick, you puke before the process in complete. Well, we think he may be an alien, and here is why. I say to him "Well than how is you food digesting wrong?"

"It started out going the right way" He uses his pointer and middle finger to show me how the food went into his mouth and began traveling down into his body. He stops just below his chest and says, "then it started going this way and went all around back here and now it is stuck right here." His fingers moved from the bottom of his chest and veered left and taking a direct route to his kidney.

I say "Oh, so your food got stuck in your kidney?"

"Yeah, I think it was a ball of cheese from my cheese pizza."

"Wow, Brodie, you have a different anatomy than the rest of us."

"Yeah, I know, I am just different than everyone else."

"Ok, well, get your backpack. Lets go home."

And so it was.....Brodie came home from school because his food traveled away from his stomach, and into his kidney. Amazing.

Saturday, November 7, 2009


I have recently begun "blog-hopping", and connecting with other families who have children with special needs. The huge spectrum of illness and disability is really too much for me to grasp sometimes. I remember the day when we learned that Remy's little brain was riddled with tumors, and for a fleeting moment, we didn't know if he was going to live to be an old man, or even a teenager for that matter. We have come to learn many unfair and painful realities about Tuberous Sclerosis Complex, and though the trials ahead of him may be great, we can rest assured that TSC will not take his life. Complications, can arise, but his outlook is a typical life-span. Unfortunately that is not the case for many families.
I recently stumbled upon a blog for a sweet faced little boy named Gavin. B.E.A.UTIFUL. His eyes are sharp, and piercing and his smile is enough to break your heart. The outlook for this little guy was never good. He suffers from Mitochondrial Disease, and over time, his organs have been shutting down. It is believed that today will be his last.
I have never met this family, or even e-mailed them, but this story has shot straight to the core of my body, and I can't stop thinking of them....aching for them....crying for them. I can't explain it, but I can do something. I can pray. I can pray that he lets go, and releases himself to the peace that can only be found in the arms of the Father. I can pray that his family finds peace in knowing his suffering will be over, and that they can go on knowing that they gave him everything that they have. I ask only that you do the same. To learn more about this family, go to

Tuesday, November 3, 2009


So, you know those days when you are just blown away by how amazing your kids are. When they surprise you in such a way that you are left....speechless? Yesterday was one of those days.

Remy's neurological issues (TSC, seizures and Infantile Spasms), but him at very high risk for this crazy H1N1 business. Needless to say, he had to be vaccinated. So yesterday, at 3pm, I , along with about a zillion other people, took part in what can only be described as MASS HYSTERIA. We stood......we waited.....we stood.....we waited...we glared at those holding spots for their friends and smirked at the poor suckers that were heading ALL the way to the back of the line, for hours... and hours to get a flippin' vaccine. All with fingers crossed that the person in front of us wouldn't get the

We made it though. I have proudly adopted the title of "Super Mom". Yeah, thats me. Three boys, all aged six and under, in line for over two hours for the dreaded shot, and we made it.

We had a full four minutes of tears from the Brode Man, who came unglued when he saw the needle. Which, by the way, was quite impressive in size. He hit the floor and that was it for him. I had to hold that big ol' six year old on my lap, one leg draped over his while restraining his entire upper body with my arms as he watch... in complete horror, as I allowed a strange man to stab him in the arm and put a foreign substance into his body. Hmm, it sounds terrible when I put it that way. Imagine how HE felt.


In comes Matai. After witnessing his older brother writher on the ground like some kind of maniac, snot running down his face, and screams of terror echoing throughout the high school gym, my little tough guy manned up...
He walked right up to the pharmacist, pulled down the neck of shirt and stuck his shoulder out there with a look of "Oh, I got this." The needle went in...nothing, not even a flinch. When it is all over, and the bandaid is finally in place, my little monster looked me right in the eye, pulled up his sleeve, pats his arm and says.........."Didn't hurt."

He has had his little chin up in the air ever since.

Sunday, November 1, 2009

Party Time!

I never did post any shots of the two latest Kruk family birthdays. Somehow, they always sneak up on me. Brode man turned six this year, just a week before starting the first grade. He had a party with some of his friends at Monkey Jump. They ate cake & ice cream, and jumped around like little maniacs for a couple of hours. He had a blast, and his Grandma Kruk made this amazing Batman cake. He loved it.

The Reminator turned two in September. He had so much fun this year. This was the first time that he really cared about toys at all, so he just tore into all of his gifts. It was great. Let us, however, have a moment of silence....for the curls.*sigh* Oh, the curls.