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
www.thecrackandthelight.com

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!

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?!

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.

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!

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..

Forever...

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!

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.

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!