Another Note

Brotherly love at it's best! Now, I found this little note about a year ago, it now resides in my closet in an album that has the kids drawings, art projects and special little notes like this one. I discovered it one day while cleaning out Christian's nightstand. See, it's like this. On the weekends, he takes prednisone, which makes him moody and irritable. You can barely bump into him and he thinks the world is coming to an end, crying and just feeling let down. So, since Keaton is a regular in causing mass amounts of emotional let downs..I had decided to have him write his feelings down rather than let it out verbally... a little safer for us all. ( or at least I thought).



So, now onto my little discovery... I actually found this quite humorous..I hope you all do as I KNOW he does not mean this!

EXACTLY how it is written:

Dear Keaton Powell


you are a pimp and you shutup your mouth. I hate you. I dont like you.

Your not playing my game tommoww. You are a dodo.

You are a brate day ( boy). Your not geting your pencle back.

I have your big pencile. You meet me at 3:00 tommorww.

this is the end of you.Your going to pay for what you do to me.



Look out Keaton, he has your big pencil and YOU'RE NOT GETTING IT BACK..tooo dang funny!!
Anyway, I also have this posted on my board at work...keeps me laughing!
Just so that you know I don't make this stuff up... here is the proof, hard to read, but here it is!

Because he is a diligent student, who goes above and beyond...he circled several words...not sure if they are adjectives pronouns or what have you..see, I was not that diligent of a student.

Comments

OK, I have had several of you not really know how to post a comment on this her lovely blog. Here is the deal, click on comments at the end of each post that you want to make a comment on..then this takes you to another screen where you write your comments in the box on the right. You don't have to "sign in" ..you can just leave your comments Anonymous.. but you must enter some weird word or all those letters in the other box before you can post your comment. If you sign anonymous..you can sign your name at the end of your comments in the box... get it? Confusing I know... but at least I know someone reads this...If not, just email me...

I am having entirely too much fun with this, lots of good stuff everyday!! I am seriously thinking that every week I can do a post on Chuck's Closet.. there is PLENTY more good stuff in there. ( well, I can do this as long as he still doesn't check my blog). Anyway, hope you all get a kick out of it as much as I do because......You Can't Make This Stuff UP!!!

Ladies...He's Taken!

Charles..Chuck...Chuckie boy.....


One requirement that was non-negotiable when buying this house was that I HAD, MUST, WILL have my OWN closet...WHY??? Well, you had to ask...The man NEVER throws anything away, including clothes.

Yep, I waited til he went to work and decided how funny it would be to go through his closet and show you all a few choice outfits that thankfully I can step in and save him and me the embarrassment before he gets out the front door. Now, not always can (and will) I do this...sometimes I get a kick out of what he is wearing, I say not a word!

First, a look at the " walk in " closet. Make sure to pay attention to the " " as you are supposed to walk in into a "walk in" closet...

hmmmm, rooomy! I know this picture doesn't do it justice, but clearly you have NO ROOM! Most of which are clothes that he just can't get rid of... Here's my ALL TIME favorite discovery.......

Oh, that looks just like the perfect box for my paperwork, don't mind if I do....

Ok, a typical outfit when going to a meeting, training or just plum church! .... You must be one lucky son of a gun to have a matching hat with that nice shirt! sweet!

Next...ummmm...don't be jealous... You know you want this...

Grandpa Jeremiah William Edward Powell lll had this tweed beauty all to himself until grandson Charles just begged him for it on his death bed. Tweed and all, scratchy..just how he remembers his grandpa's face. I'm just kidding, but he loves this thing...why??? It's soo heavy it breaks the plastic hangers, it's scratchy, hairy...need i say more????

Tweed #2...except this has those nifty elbow pads...you know, in case you rub your elbows a little too much and need a little extra something. It's heavy and scratchy just like the first one...got a mound of dust on the shoulders. He was planning on wearing this with his khaki's Sunday morning... brush off the shoulders first you know, make himself presentable.

Moving along....on the hanger together as he was planning on wearing this outfit together... ]t's stylish, in with the crowd....it has camo, what the big boys are wearing today! Yah buddy!

Alrighty then...next...hey, now that's a tie!

WHY would I throw this away??..I mean, Michael Jackson had one just like it..it has real leather trim and everything! "Beat it, just beat it...no one wants to be defeated...." Darn! Can I dye this red? Add more zippers?? Matching gloves??? oh wait, I bet I have some..somewhere!

Next...we go NOWHERE without this gadget. A MUST and I mean a MUST...we have an assortment of these...it's like a matching pair of shoes with an outfit... you HAVE to have....

the matching Fanny Pack!!!

As I said earlier...Step back ladies, he's taken!

For Christian

This is a more serious blog entry, I can't really say I'll do this often...Not really me to be serious as I hide many of my serious emotions by being silly. A safety mechanism. But, sometimes you just have to let it out...then go on and laugh some more....there is ALWAYS something to laugh about around here!

Christian's illness....doggoneit.. will not go away, and as often as I can, I make it go away by laughing and just not facing it. But sometimes I find other ways...obviously by trusting in what God has in store for him and us. And, by talking about it..then I'm good to go again..

This morning in bible class, I found a verse to a song by Casting Crowns...I'm sure that if you are the religous type, you have probably heard this song before. "Ill praise you in this storm". A very meaningful song to me as this is a storm and what do I chose to do with it?

Here's the verse : Psalms 121: 1-2

"I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the Maker of heaven and earth,"


I'll praise you in this storm...absolutely! As much as I hate the fact that we have to go through this, I have to trust in my faith that there is something better! Oh, and there is!!!

Christian has no idea what is in store for him. We don't either. A cure may come up, maybe in time, maybe not...who knows. I can sit here day in and day out and be sad and gloomy and live as this is his last days. Well, I don't care to live that way. I care to make the most of today and what he can do and be glad that he is still alive and with us. I'm not like other's who sit and calculate how much time before this happens, how much time will he be able to do this..and so on. Nope, not me! Why waste what is in front of me right now and not enjoy what I have now?
I'm not in denial, I'm in: I accept it, let's make the most of it and carry on!

Here is a video I made last year. I found this song that was AWESOME with words and said exactly what I would like to say. But I did it really just for myself, I showed my family, a few friends..but it is NOT something that I did to get sympathy, pity or attention. Well, and for the simple fact that I did a video!.. wha hoo me! AWARENESS was my first intention though. Some of you may have seen it on Facebook..but honestly, I did not post it for EVERYONE to see it, only some of you. But here it is, getcha some kleenex and hit play..that is if I can really download this..having some issues at this momment, but hopefully I can figure it out.



"Can you hear me? Let me take his place somehow..see he's not just ANYONE...he's MY SON!"

I promise, this next video that I do will be a more "funny" take on MD. I already have an idea...just wait! Oh, and by the way, If you are a Mark Schultz fan, he will be in Memphis, ummm sometime soon. He is doing a concert for AGAPE..you can log onto agapemeanslove.org and get tickets..it's for their Heartlight thingy that they do every year to raise money for adoptions. It may have already happend, not sure... just a little FYI.. Anyway, hug your little one's and be thankful that God gave you them to raise and make the most of!

It is NOT a NIP!

NOTICE: This is NOT suitable for young viewers..viewer discretion is advised.... consider yourself warned!

Most children comfort themselves with a blankie, pacifier, teddy bear...all of which are quite natural. Of course, if you were a Powell...none of these would be natural.

Let me start with my first discovery that this was a "problem". I was coming home after work one night and to get into my neighborhood, we lived on the main street. Our house was located directly in front of the "curve" into the rest of the neighborhood. So, if you lived in that area..you would pass by my house, most certainly an adventure.

Ok, so there I am driving along and there are about 4 cars in front of me (which are moving ever so slowly ) stop in front of me. I' m thinking hurry up you people what is the deal? Well, by the time I reached my house...there in the window that faces this street ( a full size window mind you) I see my son ( a little over a year old then) standing on his dresser, blinds up... butt naked with both hands on his nipples! Yeah, I was soo shocked by what I just saw..I just kept going and quickly called Chuck and told him to DO SOMETHING...QUICK! I didn't want anyone seeing me pull in my driveway!

So, this little nipple rubbing thing hasn't quite gone away. Last year at Kindergarten, his teacher had to ask what is he doing? You see... All of his shirts are stretched at the neck as this is his easy access! The moment that shirt comes off...both hands locked on the nips.

Here is a little "visual" not like you really need this... but you never know, your child may do this and so there, I have prepared you. First, the hand under the shirt method. You can see this when he's tired or stressed.... Most would not recognize what this is, well... not until now.

Next... umm, well this is what happens when the shirt is " removed"... once again "NOT FOR YOUNG VIEWERS"!

another shot, just in case you missed it...

Now, don't think I don't try and discourage this, but mostly only in " the public eye". He can nipple away at home, but not out in public. ( I do a lot of reminding).

I am reminded constantly by watching my husband that ...it could be worse! No visual aides needed. Sorry chuck, this is my blog...I make the rules, besides you are no different than any other man who sits in front of the TV and needs a good scratch.

Sign Sign...Everywhere a Sign...

Brotherly love. Nothing quite like it I'm sure, but I wouldn't know...my two rarely get along. They make Cain and Able saints! ( Hopefully they don't end up like Cain and Able). Well, so it's like this. Yelling , screaming, fighting, throwing things back and forth...Yes, quite disturbing. Oh, but there are moments that are nice to witness ( if you're ever lucky to catch this) , like when Christian falls outside...the first one on the scene is Keaton, and then he runs to tell me. Probably because he was the one who caused him to fall..Sometimes he can be real sweet and comfort him. You know, hit..I mean PAT him on the head... Sometimes they play beautifully together, but I would say that this is like the sighting of bigfoot..they say it exists, some have seen it...not soo sure.


Now here is what I do when such screaming, hateful rages towards eachother happen. Sometimes, they REALLY despise this, I have them hug one another and stay that way for 5 minutes. PURE TORTURE, I know..EVIL mom! They both cry and pitch a fit, but if that doesn't work...I do the written work. Say something nice to one another in words! Oh yes! Keaton has finally gotten to the age that he can somewhat participate in this. Now being a first grader, he should be spelling a whole lot better than what he is doing. But, he is no ordinary first grader and is too busy checking out the heater, air conditioner or pencil sharpener to pay attention. Thus is the reason why we will be back in the first grade next year.

They have even taken this written assignment a step further and now make " signs".

First..Christian's bedroom door...

and another... just to make himself clear as to WHO is to not come in or touch the sign...

ohh, and these inside his room...

I guess this sign was accompanied by another that somehow dissappeared.. don't worry, I can tell you what it said..

DANGER, GASSY CAT AND PERSON IN ROOM DANGER

Nice. Thanks for the warning. And, most importantly...pay close attention, make NO mistakes!

Next Keaton's room. Of course I thought he did pretty good with " sounding out" Christian. It says " No Christian Powell"...you know, not to be confused with any other christian.

Ok, here is what I had to ask him to clairfy...

He basically told me that he was telling christian some not so nice words and that only I could come in his room, keaton has spoken! Thank goodness he can't spell...wonder what those not so nice words are....


Well, this is it for the "sign's" for now. Several pop up from time to time, I'll be sure to post them when they happen.

Vanderbilt Update

Yesterday we went to Vanderbilt for Christian's 6 month check up before I get to the outcomes of that appointment I must first share with you a little something before the trek to Vandy.

Being the smart cookie that I am, I thought it would be a good idea to keep both boys out of school that morning and not give them their ADHD medicine. I wanted to make sure that it was in full force for the appointment and give it to them about 30 minutes before we left Jackson. Mind you Vanderbilt is about 2 hrs and 15 minutes from Jackson. Appointment at 3:0o. Ohh the many mistakes I make!


By say, 9:30 I was about to loose my cool. Fighting, arguing, spilling of milk X2, running after the cat..umm, yelling, fighting some more, a water fight, yada yada yada..... You get the picture. I knew I just had to hang on til at least 11:30. But I was clearly out of patience so with one (take a guess) screaming child at the door, I decided I had " important things to do" and was going to leave. Just as I got to my car, he went back inside, good and stay in..the whole neighborhood doesn't need to see your crazy self. I started to back out and he " re-appeared".....this time with a tube of toothpaste. What in the world? I sat for a second watching him in disbelief at what I was thinking he was going to do and what he actually did! He took that tube of bright blue Colgate and proceeded to " squeeze" the living daylights out of it...just like I'm gonna do you when I..oops, there I go again, telling on myself! So, out of the car I go, counting to 100 VERY quickly, and just as I reach him, ( the pile of toothpaste is rather large by this point) the front door opens and out walks Chuck. He took one look at Keaton and the toothpaste and me, and then I gave him the " good luck with that" look and went back to the car. Oh, Keaton got what he needed because when I got back to the house after my " errands", it was QUIET in the house...and why didn't you do something earlier??? ( referring to Chuck here, not me)


Ok, so I decided it might be best to dose out the meds...a round for everyone. On the road we go and medicine in full force. The rest of the trip went fairly well, other than getting off the elevator and as it closed I looked behind me and Keaton decided he wasn't getting off ! Too late, the door closed and bye bye Keaton... thankfully he returned back down without getting off on another floor!


So, now for the " update" on Christian's status. It went really well. This new dr is from Johns Hopkins and even worked at Cincy Children's (which is top dog for DMD). This is our 3rd time seeing him and every time we go, I like him even more. Our first appointment, he had this "bow tie" that he wore...funny I know, but it worked for him. This time he was in a nice suit..good job, (must have a misses). Anyway, we were evaluated by a Physical Therapist, which is something new that I think he started. Although we have PT in Jackson, we have never seen one at Vandy, so this was kinda cool. She gave us a few pointers, checked out his new braces, talked about " stretching exercises" and what have you and decided he was in good shape. We may need to look at certain "night splints" to help keep his feet from turning in and stretched sometime down the road..but for now, good to go.


Here is a picture of the PT showing us a way to stretch him. Since we just got a new set of braces, I now have him sleep in them so that in the morning, it goes right in with little stretching...save me some time, and you know I can use that !!!

Next Dr. Burnette. I had to ask..." Say Doc, do you want to be on my blog?" Bahhahahha, sure.

So, snap I did! Here he is talking to Christan about his wheelchair. He only uses it for long distant walking, and like at Vandy...the parking garage and crossing the streets and everywhere we have to go..it's just easier on him.


Next, Keaton acting good..just HAD to capture!

The next few pic's are of Dr. Burnett using his tool that can kinda measure Christian's strength. He has to push and pull against it. He does this at every visit, he showed a little decline, but nothing major...

another shot of the strong-man action...






Here is another picture of a "wedge" that is at a 20 degree angle that he made that can help in keeping kids with this disease stretched... say, anyone out there..can you make me one of these??? I'm afraid that if I leave this for Charles to do, it might be made with a muffler and rims...and a motor attached to it...

See, he can't even keep his feet all the way down... that is why this thing is soo good.

Anyway, overall...great check up. Dr. Burnette was pleased with how he is doing, next visit will be the " big one" again with a Cardiology exam to follow his regular check up. But this Dr, is really wanting to be "up" on the latest research and is even going to attend the PPMD ( Parent's Project Muscular Dystrophy} conference next summer. This is an organization that was founded by a mother of two boys with this disease... I can't even imagine having two son's with this disease. After we found out that this is what Christian has, we were terrified that Keaton might have it. But luckily, he did not. Anyway, this lady started an organization that funds research specifically for DMD. It is my best means of support for what we are going through. They have been truly an amazing organization to be a part of! I have met many parents that we each lean on for moral support...check it out if you want..parentprojectmusculardystrophy.com

Well, that about sum's it up...Here is a picture of Christian acting funny before he Dr. came in..he was trying to do a "wheelie" ... AND, Keaton in the background trying to figure out how to make the bed move up and down...