Take Me Out to the Ballgame!

Remember a couple weeks ago we were looking for something for Daniel to do? Well with some help from from people we were able to come up with Fall Ball.

I'm proud to introduce the newest member of the Carolina Mud Cats!!
Doesn't he look like such a big boy!

He played third base..here he is getting some coaching!

Look at that concentration! He's ready to tag out someone!

Here he is roundin' third on his way home!

Yay! Daniel, you did great!!

If there are others out there searching for something to do with their kids
Check out The Miracle League. The field is beautiful. The organization seems awesome.
Coach Scott was super. They had someone announcing he game, and the players as they got up to bat. Gave the play by play just like at a major league game. It was probably one of the coolest times, and we can't wait until next Saturday.

In One of Those Moods

Some times I catch myself staring at Daniel.
Looking at his eyes, watching his every movement.
Loving him with every ounce of my being.
Wondering where I failed him.
Struggling with the guilt that perhaps I did something along the way that caused him to have his problem.

Kicking myself because we can't give him the best of everything out there, medically speaking.
I research and research. Not just at the beginning but all the time, looking and hoping to find something that will help him. But the sad results are that even if I did, would we be able to get it for him? Because all the treatments out there, you don't know if its going to help, or if you're going to spend every cent you have in hopes to just realize that it just didn't help your child, but its great for others. What the next thing to try?

We've thought about fundraising. But times are so tough for everyone, that it would be hard. Then there is the time that is involved, that would take away from time needed to care for Daniel.

Things just suck sometimes and as I have stated before, I am NOT a good scheduler, so adding that into everything else...

I think when you're given a special needs child to love and care for, you should also be given an extra babysitter, a schedule keeper, an organizer, and a financial assistant! Anyone wanna work for me for free?!?!

Just in one of those blah moods when I have that stamp out so I can use it on my forehead
"FAILURE!"

Kudos to Ellen!!

It must have been fate.
I haven't been able to get around to read my favorite blogs lately, and today Fate must have intervened.

I have been very melancholy lately. Couldn't put my finger on it exactly, but I had an idea what it was. Then I read Ellen's post .

She just happens to nail it.
And please when I am posting this do NOT think that I do not love my family, my son, husband or the girls. Because I do with everything in me, but where is my little house with the picket fence or the pretty yard, my life of grandeur?

Where is the not so stressed people we were before? Why does EVERYTHING have to be a fight? I want the relationship where there is more than the conversations that Ellen talks about. Again she nailed it, I would have thought that she was eavesdropping on us though a whole week!

She is lucky, they plan date nights and stuff. We unfortunately don't, its just not as easy for us. Daniel goes to bed and we tend to both go our own ways to get the stuff done that we need to get done. The stuff that is easier to do without a little one at your feet (special needs or not).

But I have been thinking about posting something similar for a while but didn't know how to approach it, and thanks to Ellen--- I don't have too! So check it out and read her post, I'm excited to see how many other people out there are in the same boat. I always feel like I'm alone in these things, and its nice to know.... I'm not.

Although it doesn't take the wishful thoughts away of having that perfect family, that perfect relationship, there is comfort knowing I am not the only one.

So I will continue to be Daniel's "Cruise Director" (as put by Katy) and Lonnie will continue to be my support, and be Daniel's play mate. Both of which are equally as important.

Now I will pull out my "Cruise Director" hat and see about scheduling in some date nights for the adults!

Managing Schedules

I would never be able to get a job as a master scheduler, this is for sure.

I get so flustered when it comes to getting everything in correct.
Daniel's school schedule, his therapies, doctors, then add in my schedule, Lonnie's, and Victoria's.

Needless to say we are running pretty much all the time, and we need more hours per day to get everything done. It just doesn't work.

So many late nights, early mornings, and power naps we are struggling through each day.
And we constantly still have a running list of things that we weren't able to accomplish.
Great way to crush any self esteem you might have still had, when you feel like you go to bed each night with the word FAILURE tattooed on your forehead!

Finding the Rainbow

Last weekend Caitlin (my oldest daughter) and I volunteered to help with

the 7th annual Walk for Kids walk at the Detroit Zoo.

 

This is the organization that granted Daniel his wish last year to Disney.

(Gosh I’d love to go again, a truly magical time).

 

Anyways, they were raising money for upcoming wishes that will be given to other needed kids.  If you can donate some funds, or even your time just to volunteer to help at events, or stuff envelopes.  It all helps.

 

We were so privileged to meet many families of other special needs children that also have life threatening illness such as Daniels.  If you could see the smiles on all the kids faces, that is payment enough for your time I promise you. 

 

We didn’t walk with Daniel, as he has some unknown grudge again the zoo.  He does NOT like it and flips out.  Not just crying, but he gets the shakes and is very scared (although we didn’t even see any animals, something there set him off).  There were families there that have lost their child to whatever fight they had, but they still came.  One family had just lost their daughter Maddie a couple weeks prior to the walk.  They had one of the largest teams of over 175 walkers.  Bless their hearts, they are in our prayers.  I could not imagine the loss.  Scares me daily even thinking about it.

 

Anyways, check out the Rainbow Connection (just click the picture above) they are a fine organization to be associated with.

Sticker Shock

This month we didn't get approval for insurance to cover Daniel's special formula.

See Daniel only gets his nutrients from a special formula that has everything needed in it to keep him going. He needs to drink 5 of these 8 oz. bottles a day to get what a child his size needs.
Well it have always been covered by insurance but now, if the child is orally fed, they won't cover it. If he has surgery and becomes tube fed, then they will.

WTF right? why put my kid through surgery (painful from what I hear)
It is all so stupid. Get surgery and we'll cover it. If I would I'd feed him normal food but he can't. Because of his condition he has paralysis of his facial and throat muscles. We struggle feeding him anything and it would take him all day to eat. But the boy can suck down a bottle like no other (when he wants).

So, we can get it from the company we have been for a mere $128.00 per case of 27 8 oz. containers. 5 containers needed per day that would be a little shy of 6 cases per month. Care to do the math on that one? Here I'll do it for you cause its etched in my head

$768.00

Anyone got that extra money per month? Jesus, makes me sick.
I hate people who put something into effect and don't think about the people they are affecting.

<KNOCK, KNOCK> HELLO???

DO YOU KNOW WHAT THIS MEANS?

Let me just say this...just because you have this on your license plate does NOT mean you have the right to park in a spot when you DO NOT have the person with you that is requiring you to have that symbol on the license plate.

 

Just because you have the plate on your car doesn’t give you the right to drive like an a$$hole either. It gives you the right to get a space closer so you don’t injure yourself, or have to walk or travel in your wheelchair for a far distance. But it does not mean that you have the right to be stupid and drive like a nut.

 

I hate when people misuse the plate.  If you need it fine, use it. I understand.  But come on, there are people out there that really need it.

 

Yes I have it on my car for Daniel.  He is in a wheelchair yes, and believe me there are times when I get looks from people because they don’t understand.  Do I use it all the time?  NO, when its nicer out I will park in the normal spots however far it might be, because I KNOW that there is some who is more needing of that spot than me.  If its crappy out then yes, we use it.  If I am alone with Daniel and going shopping for many things,  YES I use it. But if I pull up at the same time someone else is and they are older and by themselves and appear to need it, I give that space up.

 

DO NOT PARK THERE IF THE PERSON YOU WHO IS HANDICAPPED IS NOT WITH YOU!!

 

NOT COOL!

 

See this?

For the people who don’t know what this is, it is a ramp built into the curb of the sidewalk so people who are in wheelchairs can get up the step.  Otherwise, generally they can’t and they are stuck... 

 

So calling all dumbasses....STOP PARKING YOUR CAR in front of it.

Even for those dropping someone off in a wheelchair and you have that special plate.  It does NOT mean for you to park there and cover it...there are other people in wheelchairs and walkers BESIDES YOU.  You are NOT the only one in the world!  PULL UP....DO NOT BLOCK THE WALK WAY.

 

Ok I’m done.  That was my rant for the day.  Sheesh, I guess the little thins lately put me over the edge.  But come on man, lets use common sense here, do the right things and don’t abuse your rights.

 

And to those who don’t heed my words?  Well then...

 

Draw me a Picture…

Over the summer we have been practicing the alphabet, shapes, colors and numbers with Daniel.  He really has gotten them quite well.

 

No he is not speaking them, but he recognizes them and when asked he will pick them out.  So the other day while I was working in the craft/office room I gave him an area to write and practice his stuff.

 

We have folding closet doors that are mirrored, so I gave him a dry erase marker. Told him to draw me a picture, and this is what I got.

 

View Full Album

 

If you look closely he did draw on the mirror…then decided he ran out of room, so decided to tattoo himself! Sheesh…I had my back turned for just a second!

 

I guess I’m not very good at juggling multiple tasks at one time.  I was just trying to attend to the calendar and figure out Master Daniel’s schedule, travel arrangements and feedings, along with school, new therapy times, outside engagements (he’s starting on a baseball league in 2 weeks!) and ATTEMPTING to get a little bit of my schedule in there too!

 

Perhaps this was his way of saying “Hey Mom….I want you to play with me!” or perhaps he was just being a little boy with marker in hand, not supervised well and he drew on the freshly painted wall too! shhhh, dad didn’t see that one yet!

 

of course when I turned and looked and him with a gasp, I got a big $hit eatin’ grin and he was so very proud of himself. Little stinker.

First Day of School 2009-2010

 

No tears, no fits, drop him off at school and that is where he is right now.

Back with his teacher from last year and he was all smiles when he saw her.

(as you can see below)

 

Life is Good!

Labor Day Weekend

Well, tomorrow Daniel gets ready for school. (I am not looking forward to it) So I figured we might as well live it up this weekend and do a bunch of stuff we don’t normally get to do.

 

Most of my brothers and sisters went to my brother Steve’s cabin up north.

So many people and much fun was had.  Here are a few highlights that Daniel got to do.

 

Drive the boat: 

Daniel  kayaking  with Daddy:

Daniel swimming:

Daniel and Daddy getting ready for tubing

(minor heart attacks but we I survived!)

Daniel and Caleb chillin’ watching a movie.

 

Caleb is one of Daniel’s cousins boy.  He is the a few months younger than Daniel, and one of the most adorable and loving kids I have even known.  He is great with Daniel.  He helps he put things in his hands, and plays with him, sings to him.  He is just awesome, just wanted to note that.  It warms my heart and I can only hope that there are kids like this in school with Daniel.  Good job Greg  & Emily…he is awesome.

 

Thanks Uncle Steve and Aunt Wendy for having everyone up to the cottage.

 

Now…for tomorrow and school.  YIKES!

Fun Foto Friday

View Full Album

3 Days a Week

This summer we had speech therapy 3x a week.

This some might say would be a drag…who wants to spend all summer in speech therapy? The answer to that would be Daniel!

He just adores Ms. Pat, and I think she might like him a little bit too! :)

As I have mentioned before Daniel does not speak like a typical 4 yr old. But he does communicate. IF you are listening, and watching him. IF you don’t doubt him, you will see. They might be subtle movements, gestures, or sounds, but watch and they are there.

Instead of speaking the standard English (which he does understand) we speak “Daniel”. So if you would like to learn “Daniel” watch the videos and you will also see, it is a beautiful language to watch and learn.

Just a couple examples -they are kind of long...I never said his language was quick ;)

Make an on-line slide show at www.OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

Trust

I don't normally watch the news because well honestly I would rather live oblivious to what the world is really like.

But Lonnie called me into the room and had me watch something, and it made me sick.
It was a report about a special needs child who has Downs Syndrome.
He looked to be in his teens.
And he was being mistreated.

The parents seemed to be good, caring people.
They decided that for the first time after much deliberation that they would enroll their son in a summer program for special needs kids. A day camp.
So that he could experience what other "typical" kids got to.

I guess from what was reported, the father said to his wife something along the lines "We have to trust people, and let him live his life and enjoy it"
This was the first time they have enrolled their child in anything. Great first experience, don't you agree?!?!

Ya know, there comes a time where you just have to/want to TRUST someone, TRUST that other people are good, TRUST that the play group you're enrolling your child in, is a good place. You hope it is. You hope that your child gets to experience life. Because they should be able to. You want someone out there to understand and love your child for who he is, and not judge him because he has been dealt some shitty circumstances.

But then you get some a$$hole person that comes along and shatters that dream for you. Shatters the dream that your child who deserves everything just like anyone else is treated poorly, without respect.

Someone happened to capture on video a worker of the organization smacking the child across his face to get his attention, and then grabbing him by his arms and pulling him backwards on the floor on his butt/back across the room.

All I can say, is luckily for that man, I was not there to witness it. Because they would have had me opening a large can of Whoop-Ass on him.
One thing I don't tolerate is someone picking on a child regardless if they are SN or not.
I would love to sit in a room with that person and ask them
"WTF are you thinking? What is your problem? WHY WHY WHY would you do that to an innocent child that does not understand?

This is why I don't trust people with my son. This is why I have such an issue with sending him to school, to therapies anywhere that I am not able to watch him.
I know most people will say, this is the odd person Melanie, most people are nice.
NO THEY ARE NOT. And if they are nice, then they won't mind me poppin' in to check to see how he is doing.

All I can say is WTF is the world coming too? Why do people have to be so heartless, clueless and just down right mean?

So to all the people who abuse these kids, or stare at them, or giggle and are just plain rude..
Watch out...cause I am one pi$$ed off mom, and I will kick you in the head!

No I'm not nice....and I am serious!