Saturday, October 23, 2010

Explain Fragile X to Me..

What is fragile x?

The mutation of the x chromosomes...

Most inherited genetic disorder...

Can cause Autism or Autism like symptoms... blah, blah, blah,

Scientific speech that almost feels rehearsed rather than really give and explanation of what it really is.

Most of the time this is what I say over and over again as new people enter into our lives, whether they are there for as a professional who went to college to study disabilities and other things or they are just asking about my son.

However, is the scientific explanation what Fragile X really is or is it just what we have said so many times that we leave out the rest of the true explanation about it?

Do we leave out the good things or the bad because it is too much to talk about?

Or do we just not talk about them because then we feel like we are dumping our life story on someone?

Or does it boil down to whatever reason we give ourselves to not talk about the depth of how fragile x really has affected us or our children??

For the most part I leave out the facts that my son loves to give hugs, is generally a happy child, and is a loving little boy.

I leave out the stresses of not being able to communicate with my son and vise versa.

It is left out that he throws fits because he is unable to communicate and he throws fits when ever it is most inappropriate.

Fits at restaurants for reasons that are unknown and that most would think that he would not due to his love of all things food and drink.

Fits occur at school and they deal the best they can.

Fits occur when we are out in public, so I try and limit where he goes in hopes that it will make things easier on everyone but most of all him.

I take my son out based on many factors that most wouldn't even think about when getting their kids ready to go out into the world beyond the comforts of home.

I judge where we are going, what day of the week it is, who is going with us, and most important: what his general mood is that day. Because even if everything is right and he is not... I feel like I am asking for whatever happens.

But the most stressful thing about going one aside from the fits are the ones that occur in the car while we are headed away from home, where he wants to be.

The fit he gives when we head home, to the place I know he wants to be most of all.

Fits going home stress me out because he knows that we are going there and that is where he wants to be...

Yet he throws a fit.

There are things that I know I can't get out of taking him... no matter what he his day is like.

We can't get out of doctors, therapy, school and every other thing that he may not want to do.. but we fight with him and drag him along. Even when I would love to just let him be happy at home.

I leave out that he is not potty trained at almost 8 years old and we have hopes that MAYBE one day he will be able to use the potty.

But I am realistic that it might not happen any time soon.

But if I had to say the most important thing I leave out is:

The loneliness that I feel when fragile x is on my mind..

I lack the having my 'father' and his side of the family, from whom I got this gene from, and their knowledge and understanding of what X has done to change my life..


Don't get me wrong I have a wonderful husband that is amazing with all of my kids and with me. Even if he don't understand me all the time.. he really does his best! <3

I have his wonderful family who has accepted me and my kids into their lives without judgment; but, with understanding and the want to learn about X.

I have my mother who still don't quite understand me, but tries to and she don't mind how crazy I can be.

All the wonderful people who have entered my life since fragile x has become one of the terms to describe my kids and I.

Including those who I just met on Facebook!

But at the end of the day I don't really know much about how this X has affected ME mentally and physically... among other things.

I don't know how this X has affected my children... other than what I can see and they try and tell me.

Most of all, I don't feel like I can talk about what is going on within me and how it has affected me in ways that I don't even understand at times.

These are some of the things that I don't talk about to those who ask what Fragile X is, what the blood test showed in 2004 and how it has changed my life forever!

Sunday, September 26, 2010

If you only knew how I felt

No I don't want to talk to you about my issues.
You could never understand.

Aside from the fact that your views on the subject
are the complete opposite of mine.

I have spent most of my life dealing with this,
Never to completely get over it.

This will never be an accepted issue
on my part.

If you knew what happen,
You would get why I am offensive about the issue.

Tuesday, August 31, 2010

public outbusts

Public places are a nightmare for my little man!
To say that would be to make the biggest understatement of the year.

I can't imagine what must be going on in his mind and body as we enter into public places.
The stimulation from the lights, sounds and large areas, are hard enough on a 'normal' person. But what is going on for him?

That is something that I can't answer, nor can he with his limited communication skills. However, that don't stop him from have a huge melt down in public places that a. we go to everyday or a few times a week or b. avoid at all cost.

We can get ready to leave the house and take the kids out for dinner. Now, let me tell you my son LOVES to eat, he is the happiest when he has food in his hands. We have a few places that we go because that is what the kids love and it is cheap enough!

He and I don't attend church because he can't handle the noise or the silence and I can't handle people touching me or saying something about my son's outburst!

His fits in public are much worst when there are people looking at him. I have learned what can and can't be done to calm him. But when people are looking and making comments, that is the moment I can't handle.

Maybe one day we can take him anywhere and not have to worry about how he is going to act or what others are going to say and how I am going to react. Because lets face it when you say something about my son I become defensive and there are defiantly times that I don't react the way that I should.

But he is my son and I will stand up for him at all cost!

Wednesday, May 26, 2010

Not as Stong as I Seem.

I got told today that someone was amazed that I have not had a break down. That I have not freaked out or had a nervous break down. They told me that there were some people in some sort of same position as me who don't have it as 'rough' as me who just lose it and freak out.

There are times when I wonder the same thing, how can I be strong enough to handle three kids, one on the way, a husband, school and a messed up mind like mine.

I am not as strong as I seem to be!

It is a every day fight for me to keep from falling apart, on the outside you would never know it because I am mean, I am a fighter and I don't let things get to me that most people would let in.

I have lived my life knowing that there was something not quite the same as others around me. Knowing that my life was different, inside my mind I was different.

Knowing that everyone is different, but I carried something that I would later in life learn really made me different. There was a reason that might help explain why I may act sane one day and not quit the same the next, crazy almost.

I am bipolar and I feel that when I was 14 and I was told that this would explain everything that I was going to be going through, yet I knew that there was something more.

Over the years since I found out that I was bipolar I figured out that this was something that I was going to have to live with and not let it control me.

This was what keeps me going, it was not letting my 'disorder' control me.

I have lived life one day at a time and I have let my disorder take over my life and run me, like when I was 15. And yet I would never go back and change what I have done in my past, but I would not want to do it again while I am this age and ever changing in my daily life.

15 was a hard age for me, while I did have lots of fun I learned that I can't let my disorder rule me like it did then.

Now I will not lie to you, there are times in my life that I can't control what is going on the inside/outside of my head, but the difference is that this time I can see the problems that I am facing and I can push though them, I can channel all the things to move me forward and out of the troubled minds that lead ahead for me.

I have learned my triggers, how to stop them from ruling my life and how to show myself that I am in control of me and not my 'disorder'. For that I am truly a happier person.

So, when you look at me and think how I am as strong as I appear, just remember that I am not as strong as I look, but I am strong enough to get me through!

Thursday, May 13, 2010

Letter to a man I don't really know...

I just want to call him, yell and get all the anger out of me...
To make things better, for me
To make me better

I want him to know everything I went though while he was gone and how I felt about things,
So I wrote a letter, for me
To make things better for me!

Warning, what I have to say in this letter is not going to be nice; it is not going to be kind. Because at the end of the day this is not about you, this is about Anthony and I. As of right now I can’t talk for Anthony however, I can talk for me and this is everything I have to say and must say for me! I would tell you everything over the phone but as of right now that would not be the best for me. So if you do not want to hear the cold mean truth from me than I would recommend that you do not read anymore than this.

I have often wondered what I would say to you if we ever crossed paths or came in contact with each other. When I was younger my only question was “WHY?”

… did you leave us when you tried to fight for us in court? Hell, why did you leave?
Now I know that it was not all your fault that there were 4 key players, my mother, grandparents and YOU, for you not being in our life. But you were the one who was not there at the end of it all. 20 years after not knowing if you were dead or alive and having no contact with much of your side of the family, until 2000 I had not talked with any of them. Once I had talked with Doug it was only for a short time (a month max) and he had no insight as to where you were. However, I do have a connection with them and I plan to keep it that way!

When we talked on the phone for the first time, it pissed me off, so much that I was never sure that I wanted to talk with you again. When you informed me that you were easy to find and WE should have found you. WE, WE, we were the kids in the picture and it wasn’t up to us and should have never been left up to us! I will admit that we did look for you, but at the end of the day YOU should have been the one to find us. Did you know that I made it easy, my entire life to be found on the internet, I kept me maiden name open while I have been married in hopes that MAYBE you would look for us… maybe.

But after I was about 17 I decided that I didn’t want a man in my life that clearly didn’t put forth the effort to be in mine, because at the end of the day you were not there. While I still have issues with that fact I didn’t let it rule my life!
When we talked I almost felt you wanted me to feel guilty for you because you have been off drugs and fought really hard to stay clean and that you wanted to take care of you. Well, that is all well and fine however, my mother went through her AA and NA, taking us along the way to make sure that she fought for herself and us. Since, she has gotten clean, my mother has fought with being clean, but you know what she did it and raised us!

While you may have had many surgeries and a rough life, dealing with yourself. But I have had it rough too, because as a kid I wondered what I did to make you leave, what I did wrong. Only to learn that it wasn’t me, it was YOU.
Clearly I am not a nice person, I have been told many times that I am rather mean, but you know what, I really don’t care because I speak my mind!
As for you coming out here, which would not be for the best, because I am not sure that I even want to see you right now. You see I am bipolar to the extreme and the built up anger and issues that I have with you wouldn’t be good for me. I am not sure how I would react to seeing you. So please don’t make any major plans to come out here.

If I end up coming out to Cali, don’t expect me to come and see you because I am not sure that I really want to as of now. Also, why should I allow you to be in my life now, family is the most important thing for me and I will not allow you to come in a mess up the happiness that I have built without you.

We can talk on the phone and maybe just maybe one day I may be ok with you coming out here, but that is a LONG time from now.

Monday, May 3, 2010

What is Fragile X?

On the eve of everyone knowing that I am going to have another child, I am led back in time to when I found out that my son and daughters were diagnosed with Fragile X.

All the emotion and fears that came to my mind when I was told what was going on, and how our lives would change from that moment on.

I tried to explain what the outcome of me having another would mean to the baby and what it would mean for the family. I find that even though I had explained it before when this little life is brought into the world, denial for what I carry and pass onto my kids come from outside sources.

The idea that if this child is a boy that 'it' will not suffer with the Fragile X as my son does is Ludicrous! The doctors told me that the likely hood would be slim to non existent. But hay what do they know... they only study it for a living.

I hope for a girl, but the outcome of a girl is likely to be the same as my son is a possibility (smaller but still.)

We are not ready for another baby, but I will love the baby and we will make it!

But definition Fragile X is:

Fragile X is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities (sometimes referred to as mental retardation). Symptoms also can include characteristic physical and behavioral features, anxiety, and delays in speech and language development. Fragile X syndrome is also the most common known cause of autism or "autistic-like" behaviors.

In my world, Fragile X is a family member that has changed everything I knew about life and love. My son has opened my eyes to a world that is different and scary. But most of all it has become a world that is not negative, but a life changing even for us all.

Saturday, April 10, 2010

I am, I am, I am

I'm mean
I'm spoiled
I'm a bitch

These are the things that I keep being told by others. I have come to a point in my life that I am who I and I have changed and been affected by all the things I have done in my life. There are things that I will never talk about, things that I can joke about and things that I am open about. I can't say that I regret anything that I have done in my life, because without those crazy, stupid and reckless things that I have done I wouldn't be me.

There comes a time in someones life that they have to realize that there is nothing that they can do about their past, only learn to live with it and to take things one day at a time.

It was brought to my attention that there are some in my family that had some other wise not so nice things to say about me having my kids at an age that 'society' deems too young and to those I say get over yourself. (however, Karma came back at you didn't it!) I would never change the time that I had my children! I was young and able to keep up with them, my son would have Fragile X with or without me being young. So, I have learned more from my kids than I could ever learn from some school.

My husband tells me that I am a mean person... I don't care what people think and I don't realize how I come across to others. When I don't think that I am saying something mean others think that what I said was mean and out of line. I feel like if you don't want to know how I feel or what I think about something then don't ask me. I don't want people to sugar coat things for me I want the truth... but I have learned that many say that they want the truth and inside that is not what they mean and that is when I am considered mean. Maybe you should not ask me if that is not what you want to hear, or here is an idea ask me to lie to you an I so can do that! : )

I have had many people in my life tell me what I should do and should not do, but I finally came to a point in my life that I stopped letting people walk over me and I quit caring what others think. I started to do the things for me and not worrying how or what I did or didn't do.

This is the conclusion that I have some to about myself..

I am a born leader, opinionated, moody and unafraid of what people have to say about it!

Many say that I'm intimidating until you get to know me...I guess it's the "aura" I give off...a strong, independent, bull-shit-free personality.

Easy going, funny, and big hearted.

I try not to pass judgment and always try to remain open minded.

Driven, out going, and very honest.

Honestly if you wanna know if your ass looks fat in those jeans, just call me, I'll tell ya..I'm 100% honest, I won't sugar coat anything for you unless you're a little kid or something :}

I am not afraid to say it how it is.

I love to have fun and to travel, although I don't think I do nearly enough of it.

In short at the end of the day I am me! Who can fault me for that?!?!

Tuesday, March 23, 2010

My Father

As I was driving down the road... which I must say I do wonderfully! But that is off topic.

Anyways, as I was driving to pick up the kids, from school, on this beautiful day I had the radio up and a song came on that makes me run though a series of emotions.

Sweet Child of Mine by Guns & Roses came across the air waves and in the 5 minutes that it was one I believe that I went though every emotion from anger to contentment.

As you ask how is it possible that you can flow though such emotion from a single song.. for me this song contains memories that I want to remember and ones that I would like to never think of again.

Since I began to talk to my fathers side of the family, it makes me wonder why he would leave his own children.

I understand that everyone in my family has their own story as to why he is not around and while I realistically will never know that answer to that... I have grown to question if I ever want to know why.

One of the only memories I have of my father and myself are sitting on his lap and him singing that song to me.

When I was about 9 years old I am not sure what brought it on because I would have been about 3-4 when he did that, but I asked my mother about what I remembered and she told me that it used to happen all the time.

I would crawl up in his lap and when the song came on he would sing it to me. As my mother said I was his mini me and in my eyes he could do no wrong.

Then he walked out of our lives... and now as I listen to that song I am flooded with the one happy memory that I have of him and the anger that he could leave his children.

I don't really remember what he looks like, however if you talk to anyone in my family they tell me to look in the mirror. Yet for me at times that really is not enough...

I love that song, no matter what I have to say about the memories... even if one day they are good or bad or if they are just memories that we all have to live with.

Sweet child of Mine makes me smile, angry, over-joyed, or content with the way that my life or mind is!

HAHAHAHAAA I just realized I might have issues...

NO NO wait...

I already knew that and there was no question about it!!

Sunday, March 14, 2010

Me in a Nut Shell Part 1

So here I start to write about the past that I have such a hard time talking about. There are things in my past that feeling like a dream and in a way are stored in my memory as one. This is meant to help me open up, share those dreams.
At the start of my parents separation, my mother, brother and I were picked up by some friend's of my mothers and we were going to stay there for a few days til things calmed down with her and my father. This night seemed like most CA nights, stars and the moon hidden behind all the lights of the city, the warmth that you grow to love every night, and the sounds of all the people surrounding you going about their lives without noticing others. We pulled up to the apartment complex and pulled all our stuff up the first door of the second floor apartment. As we walked into the already open door, I noticed some older boys outside, having fun jumping off the railing of the second floor and landing on the ground, I wanted to sit and watch but was hurried in by my mother. As we entered through the door of the living room, it contained a house full of adults and a bunch of playing children in a bedroom. Immediately my brother and I were sent to the room to go and play with the other children and told to stay there until supper was finished.
However, I had other things on my mind, the older boys outside and why they were jumping off of the railing! So, being the curious little child I was, I decided that I would go outside and find out more. I snuck out past a room filled with grownups and out into the night time air, one of the three boys were fixing to jump and I sat on the top step and watched them.
As one of them came back up the stairs he stopped and asked "would you like to try and jump."
I replied, "No, I don't want to."
Their joined response was, "No means yes and yes means no,"
I was put up on the railing and pushed off. I don't remember feeling any pain at first, come to think of it I don’t remember the fall or even hitting the ground. I felt as though I couldn’t walk and so I crawled over to the steps and I felt something warm and wet running down my face this sent me into shock. I touched my hand to my face to see what it was, as I pulled back my hand and saw blood, my immediate response was to start screaming for my mother. Within a few seconds she was there and yelling for someone to call 911. She asked if I was in pain and to my surprise I was not, I was just scared.

During the divorce between my mother and father, my little brother and I were caught in the middle, of a nasty fight. One afternoon, Anthony and I were going to see my father at the ‘meeting place’ as we were told. As we entered the waiting room of this office, we become bombard by a uncomfortable atmosphere of people who want to be there as much as we did. The walls of the room are ocean blue, with Little Mermaid characters, used toys being played with by children, next to these children are their parents seated in uncomfortable, black, plastic chairs, thinking of all the other places that they would rather be.
As we were seated to wait for my father, my mother sat there, talked and played with us, about 10-15 minutes later my father walked through the door with the usual box of gifts such as; Beauty and the Beast video, Barbies, and Turtles. These gifts are the types of things that my father brought to us all the time, and in that moment of joy for seeing my father, I was suddenly hit by a wave of sadness that I couldn't explain to my father about. We were taken to the visiting room, a room that looked like something out of a police interrogation room, blane walls with cartoon characters, a large mirror on one wall, a couch, and more piles of used toys, this room was a something that I couldn't stand to be in. I sat in that room that we were taken to and played with the toys that my father brought all the while I was hoping that things would be great again in our lives.
The time came that we needed to leave and my father walked with us out the building and down the street. We came to the street corner and parted ways with him. I remember holding the newest barbie, my brother holding his turtle, and saying our goodbyes, as he turned and walked the other way and we waited for the light to turn for us to cross the street I took my mother's hand and asked her, "Was daddy trying to buy our love so we would go and live with him?" I am not sure now how I came to that or why I asked when even at that time I knew the answer. She looked down at me and answered, "Yea, I guess that you could look at it that way." So that was the end of that conversation.
Even at the age of 5, I watched the way that people acted and talked, in some way maybe that is what gave me the insight to realize the types of people that were in my life. This life's lesson is something that has brought me to become the person that I am today.

Thursday, February 18, 2010

Relating to someone I will never meet.

Have you ever started reading something about a stranger, yet you felt like you have known them your whole life. As you are reading about that persons struggles, pains, problems and joys you feel like you could have wrote that about a child, friend or partner. As you think about how stressed out you are, you begin to wonder if maybe you are not the only one on this planet who is going through everything within the daily grind in your 'normal' day.

Maybe there is hope for me and someone who can relate to what I am going through, now I don't expect that I will ever meet this person that wrote the book that I am reading however, whether or not I know that we are connected.

So before I continue I guess that I should state the name of the wondrous book for me: Spelling Love with an X, by Clare Dunsford.

This book was bought for me by a good friend and my son's therapist as a gift, I am always into reading and learning more about the genetic disorder that I passed on to all of my children. My son took the rougher end of it because he only has one X and his mutation of the X Chromosome is rather high, which gives him the moderately to severely mentally disabled.

I have began to read this book the women stated that she knew that there was something not quit right with the way her son was responding to everything and that she knew that her son had something that made him different and that made him special. I felt the same way about my son, now I know that every parent thinks that their child is special in their own way. But the kind of special that she and I am talking about is something completely different, Xavier didn't act or show emotion to me the way that my daughter had.

Our bond was missing, I loved my son like no other but the connection that I felt with Nicole was missing. At first I thought that maybe it was me and I was the cause of this problem, that Xavier and I didn't connect the way you hear about with a mom's boy. Now don't get me wrong he is my love and my only son but he never really had held a connection the way that my girls do. Clare talks about the same feeling and this gave me a warmer sense that this maybe a common issue with X, (for the duration of my writing I am going to refer to Fragile X I am just going to refer to it as X). I have read may articles and books concerning X however, reading something from someone who is living with it and not just a doctor who has done research.

As I began to read about her concerns towards her son's development and the feeling that she was the reason for it and back when she was first told about it and her denial towards the possibility, I saw my first reaction towards the doctors orders for the blood work.

Once he got tested and we were told to go see the genetics doctor, they gave me information about X and things took a long history. While there I wanted to point the blame of what was wrong with my son on his 'father' as well. However Clare like me forgot basic science and that X chromosomes are just passed to the son by the mother.

Now all of my kids have the mutation and my daughters don't have the full mutation, however if the ever have kids they are looking at a 50/50 chance of their kids having it. I know that IF I ever have a child my odds are higher because of all of my children mutation.

Clare understood that she would have to sit down and have the 'talk' with her family and I would have to do the same. I talked with my mother because I knew that if she had it all of my siblings might and this would need to be something that is talked about with them too. However, because I am a girl and I got both and X from each parent it was concluded that I must have gotten it from my 'father'. This would help me to understand later while my mother told me about my 'father's' side of the family and my uncles disabilities. This is a disorder that is hidden and like a nasty infection is will show itself when it is ready and some may end up with X and others can live a while life and never know it. My grandmother most likely never knew that she had it and if I didn't ever have a son I would probably be in the same boat.

But at the end of the day I know that I am not alone and I can do this! I am going to continue reading this wonderful book and maybe mention her in the blog from time to time.

Monday, February 15, 2010

The little words...

As my kids and I sit down for yet another day stuck at home from the snow. I look at my kids and wonder how did I ever become so lucky to have three wonderful kids?
My wonderful son makes me go though every emotion though-out one day without even trying, yet I will love him forever unconditionally.

No matter how stressed out I become with the fact that he picks up words and just spits them out and I am not sure if he even knows what they mean or if he just copies what the girls say. First the word 'yep' showed up and that was all he would say, it didn't matter if it was: "Did you pee in your pull up?" to "Are you going to stop crying?" Then he would start crying all over again. So in a way I just began to see that no matter what I would ask him he would respond with a 'yep.' Than he began to stop with the 'yeps' and moved to 'I know,' and when I began to look at all the things that he was saying I wondered even more if he was just coping his sisters. Nicole, my oldest, whenever she would get talked to about something she knew she didn't need to be doing or if she didn't do her homework when she got home, I would talk to her about it and she would respond with, 'I know,' as time began to pass from all of this I seen that my son started to say the same things. So is he really talking or is he just saying things that he hears. I know that you can split hairs and say well he is talking but I am talking about meaningful talking. Words that he really knew what they mean and that he is using them in the right way.

If you sit back and listen to him while no one else is around you will hear all kinds of noises and sounds, but are they meaningful that would be considered 'communication?' In my eyes I feel that he tries when he wants to but only when he wants to and on his time.

Ever since my son was first in therapy we have tried to work with signs and pictures to try and help him to express his needs and that has worked some however, he is never consistent with using them, even though we keep working at them. I have fought to get him a communication device and I am going to he working with his school and therapist to try and get him to either use the device and start talking or just use the device to express his needs.

He has come along way in the past few years since he was first diagnosed with the Fragile X and Autism. We are taking his progress one day at a time, even though he may never talk, be potty trained or do any of the things most kids do, I still have hope and I will always fight for him to be the best no matter how far he can go!

I love my baby boy and my two wonderful daughters!

Thursday, February 11, 2010

My lil man!

On 29 October, 2002, my son Xavier “Bubba” Wooten was born weighing whopping 9 lbs and 1 ounce, 21 and 3/4 in. long. From birth he was a large child with a huge appetite. At about the time when most children start to bond with their mothers I noticed that my son was not. I talked to his doctor and she was like…”kids take their own time for things…” As time pasted Bubba was not doing the things that most would at his age and the doctor once again said… “He is just a big baby and gives him time he will get there…” That came as not much comfort because something in my heart said that my son was different. Now, let me say this different to me is not a bad thing just that he was not like my oldest daughter! Well, at a year old I enrolled him in First Steps, for the following reasons; he was not crawling or walking, he was not making eye contact, or any sounds. Bubba’s therapist helped him to crawl at 14 months and walk at 21 months. This was a long process! The sounds were not coming along or the eye contact, so I took him back to the doctors and they said that, “he will get there on his own time…” this didn’t settle well with me so I moved and changed doctors.

I took Bubba into his appointment with the new doctor and they did check up and told me to take Bubba for blood work. At first I was like… blood work what is wrong with my son? What will the blood work show? Will this help? Then, we got the call to come back about a month later because the test took that long to get the results. I went in and she said…”The results show that your son Xavier has Fragile X Syndrome. This is a genetic disorder that is just now coming known.” I had many question and she sent me and Bubba a genetic specialist and they explained it. They said that Bubba would show signs of Autism and later in life he would probably diagnosed with it. He was 2 1/2 years old when I found this out and Bubba will be 8 years old this year.

I wish that I could say that he could talk, make eye contact or communicate with out crying … but I can’t. Xavier may not able to do that and but he can do so much more! His smile brings my heart to life, his hugs are gentle and his heart is pure. I love my son, however things are not as easy as many want to try and make it to be when you have a child with a disability. I am a mother of three, married, car driving, therapy and doctor taking, full time college student, manager of my husband’s band and the strong hold for my mother and brothers. My days start before the sun comes up and ends … well some days they don’t end at all. I start the day with getting myself ready at 5 am, kids ready for school, off to school for me and home for therapy and appointments, supper, homework, baths, fussing and fighting siblings, bed time and dealing with a band and all the stresses of the members, booking and gathering things for them to become rock stars. Having a husband that is not the father of your children is a little hard, but he loves them as if they were his own. My husband is the lead guitar player and things with the band are stressful, but my son loves to get up there and play his fake guitar and make noises as his ‘daddy’ plays guitar. I wish that everything went as smooth as it sounds on paper but it is all chaos. Bedtime is the hardest because Bubba never wants to sleep and he is up off and on all night. But of all the things that I have going on in my life and all the times that I want to give up or just stop all the madness all that I must do is look into my children's eyes and I know why I must go on. Life with kids in not easy, but life with a child with special needs is hard. Xavier needs so much, cries about everything, wonders into his own little world, and is constantly being told not to do this or that. But no matter what I know that no one else can do for my son what I can and no one else will have the chance! Because at the end of the day when I am ready to break from all the madness and I am ready to walk away for a while… one thing always brings my heart and mind back into it and that is my children’s smile.

A real stuffed kind of helper! I was told by a friend and therapist to get Xavier a bear that none of the other kids can play with and one that he would like. Well, I thought to myself that this would be worth a chance because anything that will help is worth a chance even if it works for just 2 minutes a day! Well, I wanted to take him to Build a Bear Workshop… but those bears are expensive. One day we were out and I saw a Beanie Baby store and my son got excited. So we went inside and in this store we found a little reindeer that he just grabbed and he hardly lets go of it. This bear sleeps with him, goes to the doctors, therapist with him and school (if I let him). He makes noises to the bear and hugs and loves on it. I love this little bear, because of the look that he gets in his eyes as it to communicate it to the reindeer… but who really can say if he is or not in his mind.

At the end of everyday, I stop and try to remind myself of everything that I means the world to me and that one day, with any luck at all things will be a bit dull and there will be a time when I can stop breathe and think to myself that my life is dull. However, why would I ever want that to happen, because I love that my son is different and that my daughters understand that he is different and they will grow up with the knowledge that there are others in this world who are different and that maybe they are just the same, just with a special touch.

Tuesday, February 9, 2010

A quote...that we put too much into...maybe you judge it...

As I sit here I wonder what we are all working towards. I mean, how can you be sure that all that you are doing is the right thing and that all that is going on is a trail just to make you stronger… we all know the saying and at times I am guilty of using it but how can we really be sure that the saying is true?

"What doesn't kill you will make you stronger."

How can you really know if it is not killing you? Well, let me explain it this way, our bodies wear down as we resist things that are going on in our lives…like we resist that dog that is after us or the cancer that we have had for years and we don't let it take our lives. Because at that point that we stop resisting that cancer (sickness) is the moment that we pass on because we let our bodies give up on all the fighting or we just can't fight anymore.

So when you think that you can't do it anymore, remember that you can as long as you fight you can keep going. Now back to the quote or saying, the longer that we keep fighting our immune system breaks down and we become tired…

So how can we say; "what doesn't kill us makes us stronger," but does it mean that we are fighting to make us stronger inside then we can ever imagine right now but later in life better, a stronger soul and heart to help us gain a love and understanding for all things that make us who we are the very next day?

Or could it be just a crock that we say to help us make it through to the next day that we really are not sure it we want to resist the next set of trials. I have many trials in my life and I just sit here and wonder why the things are going on in my life and the trials are they really to make me stronger, is it just a cruel joke that is played on the whole of people that fight all their life and still fight as long that day goes on and we can't seem to get out of this hole and yet we are not really in a point in our lives to go on.

All the garbage that we find about love is just garbage because we all need to find our own meaning of love and not follow the norm…because I know that my love for Jason is unlike any of that found in a story book because it is so much more and still I can't put it into words…but I am not really sure that I should, because I know that I don't have to justify the love that I have for him because he knows…sometimes more then I do!

Only thing wrong with love, faith, belief and the heart is not having it in your life.

How do we know??? How do I know??

How do we know.....

If we are doing the right thing in life?? I ask this today because I am in a I don't want to be in college mood and as I look at the classes I have right now and who I have become since just last year even, I am forced to wonder....

Am I doing the right thing?? Not working and just going to college?

Should I do something else??

What if I am wrong about the career??

I am great with people and most who know me know that I am great at listening, not judging, and I love to help!

However, I have a great love for all things music and managing bands has been a great thing and I have the attitude for that and so much more that is needed!

I really don't know what I supposed to do... really life is rough right now and I want to do something that is going to make me happy and give my kids a great life but what if I choose wrong.... how do we know?? How do I know???

Is there a map in the sky? A hidden book that we all should read about ourselves but is hidden in a far off land?? How do we know?? How do I know???

I can't figure out what to do... I love psychology and helping people is something that I love to do and I love to understand the human mind and the reasons why we act the way we do. However, music is my life and I find all things that go with it is great or challenging... I love it!! But how do we know what to do?? How do I know what to do???

I love psychology and music, what should I do???

How do we know??? How do I know??

Last semester I decided to change my major from psychology to an entrepreneur degree. Now I know that I can use my BA in business to walk in a get a job in music or what ever else that I want to do. But is this the right thing to do... or is it just that I am wore out all the time from the same daily shuffle of class, kids, house stuff, husband.... and repeat and repeat. Is this what I am destine for? To repeat this endless shuffle? Or is this just what I have to do for now to get to the smoother parts of life. How do we know??? How do I know??

How do we know??? How do I know??

We all hit times like this, or so I hope... maybe others are out there that feel the same way and just don't know what to do or really have anyone to talk to this kinds of things and more. How do we know?? How do I know?? If others are there with me in the same place?

How do we know??? How do I know??