Thursday, July 14, 2011

RIP Misty Payne

Misty Payne
September 09, 1980-July 13, 2011

Although, we may not have talked that much,
Our heart still broke today.
You went on to another place,
And left us here to stay.

We're not sure where to go from here,
But we will remember you always.
Until we meet again..
Somehow, some way.

The night I lost a wonderful friend, this came to me before I fell to sleep. It is hard to lose a friend that young with such a wonderful family that will miss her dearly. Every word I said came from the heart.. Misty you will always be missed and loved by so many.

Saturday, June 18, 2011


I seen this on a fellow bloggers page and I fely like I needed to post it and fit it to follow the many times I have had to say that I am Sorry.. because lets face it.. we all have more times than we can count.

A letter to my children, in hopes that they will learn from my words.

You will have to apologize more times in your life than you can even imagine. Yes, when you are young you will think that you could never possibly be wrong. But you will be. Oh how you will be. You will do things for which you are ashamed. You will hurt the people who are closest to you. You will say words you wish you could take back. Inevitably, there will be friendships that will be irreparably fractured. It happens to all of us. It is called being human.

It seems like apologizing would be something easy to do, but it isn’t. So just how do you apologize? I have compiled some rules for you to follow.

Rule #1:

Resist the urge to use the word “but.” You will want to. You will want to explain your actions or your words, whatever it is that has caused the other person pain; don’t do it. The word “but” negates all the words that came before it.

Rule #2:

Apologize for your actions. Take Responsibility!! Even if you think that the other person has some fault in the argument, apologize for your part.

Rule #3:

The most important thing is to be sincere. Look the person in the eye. Don’t give a half-hearted apology and say something like “I am sorry you got upset when I…” A half-assed apology is worse than none at all. Because not only are you not offering up an apology for what you did wrong, you are telling the other person that they had no right to get upset.

Rule #4:

Do not text your apology. Do not email it. For the love of all things holy, Do Not Post It on Facebook. Give the person your apology in person, or if that is not possible, over the phone.

Rule #5:

Offer reparations. Make it right if possible. Show the person in a meaningful way that you are truly sorry.

Rule #6:

Let it go. All you can do is apologize. You can’t make a person forgive you. There will be times when an apology just isn’t enough and the relationship will end. It is in those moments that you should learn from your mistakes and not repeat them.

Rule #7:

You should realize that as much as you will have to apologize, others will have to apologize to you. Be gracious. Offer forgiveness. Sometimes you will find yourself overly invested in hanging onto your anger and enumerating the ways that you have been wronged. That is precisely the time you should do some self-examination.


Your Mother, who wishes she didn’t have to learn these rules the hard way

Tuesday, May 17, 2011

Me Two Years Ago Vs. Me Now

At a party for a friend of mine's and my birthday party I was having a discussion with a friend and a friend of hers. We discussed politics, religion and then we got on the topic of disabilities, government aid and my choice on kids.

First I will explain what I said and then what would have been said and done.

Person 1 - friend of a friend, against government aid and my choice for kids. She works in a hospital in patho.

Person 2 - friend of mine who understand the need for government aid and choices. She works with people who have disabilities.

We were talking and person 1 expressed how she felt about people with disabilities and that they should not get government aid. She said she should not have to pay for someone else's bills and that there should not be social security, because people should learn to take care of their future themselves.

This upset me, but I kept calm and explained my said of it: I told her that most can't hold a job or even function in normal society without having some difficulties. My son can't enter a store without freaking out and he might not ever be able to get a job and will most likely will live with me or in care of someone forever. His doctor bills are too high for us to pay for without some kind of help. I see more specialist than you can imagine. However, I am going to college and I hope that one day his need for this aid will lower!

Person 2 explains that she works with people who don't have the ability to hold a job, they want some independence and the aid they get helps them keep some independence. Having a child with disabilities is hard enough without having more stress about getting medical bills that they can't pay.

This discussion continued and person 1 still stuck to her side that she didn't want to pay for others and that the government wasn't meant to help people in that way.

I told her she should try and have a child with disabilities and I knew her tune would change.

Then person 1 asked me how I could have more children if I knew I had a genetic disorder and if I have one disabilities.

This really pushed my buttons...

I told her that I didn't know I had the genetic disorder until I already had my first three kids. (Being upset figures went out the window) Having a girl with the full mutation of FXS is slim and there are chances that you can also have a boy without the disability. You (person 1) should know that medical breakthroughs that happen everyday; that there will be a day that there is a cure or a way that people who have it are not as debilitated by it. If I decided to have 10 more kids it will be my choice and I will take care of them just like I am now!!

Person 2 defended me and said that she knows someone who had a child with Down's and they decided to have another child.. because they knew the chances of having another one with Downs is slim.. however, they did have another one with it. But they get aid and the kids are growing up with parents who want to love and take care of them.

I stayed calm during this whole conversation and didn't fly off the rails...


Had this happened two years ago that would not have ended with me upset and still talking.

It would have ended with me going to jail for kicking her a*s because she was rude and unkind about her opinions.

I get now that everyone is entitled to the way that they feel.. no matter how pissed I get or how one sided their way of thinking is!

Growth is a b*tch sometimes!

Monday, May 2, 2011

But.. Sometimes

A friend of mine posted this:

I'm a little girl or a little boy
Sometimes I run real fast or jump real high,
Sometimes I just watch planes in the sky
Sometimes I must have my favorite toy
Having it close gives my joy.
Sometimes I think the same as you or your friends
Sometimes I say something again and again.
Sometimes I have words inside my head
a scream comes out instead.
Sit with me, play with me, or beside me
I'll watch you and know what to do.
Sometimes I flap my hands!
Do you suck your thumb?
Neither of us is dumb!
I like pizza, french fries, movies and bowling too!
I got a Nana, an Auntie or two.
Sometimes I laugh a lot or spin around.
Sometimes I'll plop right down on the ground.
Instead of saying no I don't want to,
I just stare and look down.
Look into my eyes even if I just stare,
You know what?
I'm in here.

This could have been wrote about my lil man. It makes me feel sad that there are so many times that my son has been looked at like he was not the same as ever other kid..

There are days to look at him and watch him you would think that there was nothing wrong

There are days that he goes and 'plays' football all on his own with other kids that you think.. there is nothing wrong.

However, my lil man

Believe What You Want

WARNING: This is an entry that is honest and not for those who don't want to hear how I truly feel!
If you read on and don't like what I have to say.. you can't say I didn't warn you! <3

A common posed question that comes from living in what is known as the 'Bible Belt' is "why don't you attend church?" Some have posed this question and began preaching about God.

Personally I have come to a cross road, where my childhood belief in God has been replaced by more questions that has paused my belief that there is a God and if there is..

How could he allow the things to happen to me as a child, (the MANY types of abuse I endured), or any child for that matter and say that. Then to top it all off... if you ask for forgiveness for what you did to supposably God's children you can still be saved.. REALLY.. I mean REALLY!

The Bible a book written by MAN is what everyone is supposed to follow.. well on my time on earth.. I have learned MEN LIE. Hell, everyone lies.

I could go on for hours at this point and I know that EVERYONE could argue their points and religion with me until we are all blue in the face.

However, changing my mind is not going to happen just like changing your mind will not either. I can see that many want something to believe in and I can understand that.. but I am not sure that I could agree with every point that is made.

My disbelief spans from many things that have happened in my life.. what don't kill us makes us stronger right.. WRONG.. it inevitably changes the way our mentality works and what we think about life from that point on.

I am going to live my life the way I feel and if at the end of the day I am wrong.. then I did it my way and I was happy while I did it.

Who would fault me for that?!?!

SO at the end of the day when you question my soul and how I live my life.. Know that as a child I grew up in the church and was still abused as a child! After I was 'saved' in that church I got even MORE abuse..

Now I question every aspect that you believe in and I can understand if you want to question mine.

I will not push my views on you and I would like it if you didn't push your view on me.

I allow my children to attend church and figure out for themselves how they feel at the end of the day.

But I am happy with the choices I have made for my life and that is the way I want to live this life!

Thursday, April 14, 2011

Slightly broken hearted

This letter was posted today by a friend who found it online. I thought it was worth sharing today!
An Open Letter to all Professionals

Hello? New teacher, or therapist, or doctor?

Is that you?

Oh hello… I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

the crack and the light

This really brought me to tears as I read these words. I feel like I could have written the same thing to my son's teachers at times!

Friday, March 25, 2011

Thinner than paper.

I am blue and I am not sure that there is a dye that is strong enough to brighten my mentality right now. The motivation for cleaning, laundry, homework and appointments is really taking it toll on me. It is all closing in on me.. when all I want to do is lock myself in a little room and stare at the wall or the inside of my eyelids.

While I don't let how I feel stop what needs to be done... house work, class work, appointments and everyday kids stuff, that don't mean that I don't want to still hide.

I love my kids and I vas in all that they are and I love spending time with them, however; all the arguing, tantrums, sleepiness nights, broken stuff and every other negative behavior pulls at my strings.

There are days that are much grander than other and some that are not so good. But as I stepped away for a few days after I started this entry I realized that I am richer in more than any wealth many could ever imagine. So what started as a blog about me just at the end of my rope and wanting nothing more that 2 minutes alone to breathe, I realize that I am not sure that it's what I really want at all.

But what do I want.. is there really anything that I want?

My kids are healthy.. aside from our X's!
We live in a nice house that is only getting better the more WE work on it!
I have a wonderful husband who loves me and accepts all that I am ~ crazy X's and all!
My kids are happy and so is my husband and I!

Now that's not to say that there are days that we are not happy and we are stressed and needing some time apart.
But in real life who doesn't need time away from each other. We are a family and dissipate my personal issues and faults, I will live with the negative behaviors and just look forward to the days that are better!

Because without me looking forward to the days that are grand.. how will I ever make it?!

Tuesday, January 11, 2011

If you knew.. would you still?

At first it was very hard to know that I passed on this gene.
Everybody said you shouldn’t feel that way, and my response was always "okay I won’t."

But it makes a difference, knowing that my genes made life a bit harder for all my children
and maybe taken away my daughter's desire to have children.

After seeing the struggles that their brother has went though.

Had I known, I probably wouldn't have had children.
But thank God I didn’t know because they’re all a blessing.

Correction.. I did have more children after I knew.
I love my family... extra X's and all.

Monday, January 3, 2011

Neurologist and FX's affect

For some reason I have to choose to take my son to doctors that are almost 100 miles away. When there are the same type of doctors closer by..

Wait I know why I put my son and I though that torture... because the doctors that are further away know what FX is.

So Lil Man, my youngest daughter and I made the long trip up to UofL Pediatric Neurologist, and I learned some intreating things and the doctor made me feel a little better!

Lil Man has had one major seizure and some small ones.. that we know of. Well, I asked the Dr.. if there was a possibility of brain damage from his seizures because he is having some trouble with learning certain things.

His therapist is working with picture cards to improve his speech and identification skills. He can master pictures of chicken nuggets, cows, cats and dogs, just to name a few. He can do most of them with just being showed the picture and asked "what is this' he may need a prompting or two, however there are very few problems with it.

However, we are also working on X, A, 1, and 2 and this is where the trouble starts for him. He is having trouble remembering what they are and even after being prompted 3-4 times and being told what the cards are he still hasn't mastered them. We have worked on just those four for about 6 months now.

After explaining why I wondered if there was brain damage preventing him from learning different things, he explain that he didn't think so. He said he felt as though it was just the affects of the Fragile X on his ability to learn certain things.

While this is not the greatest news to hear, it does make me feel a little better to a. know that there is not brain damage (none found anyway) and b. that maybe he will learn it all on his own time. Just like his ability to speak.

The long drives make it all worth the trip to have a doctor who knows what FX is and I don't have to explain it first!