{Time to LIVE ~ LIVE ~ LIVE!!!!}

Over the last 4 years Al and I have worked opposite shifts to limit Michael’s need to be in someone else’s care. I have to say this has been really hard for all of us {Al working Mon-Fri, me working the weekends}.

It is TIME for a change, TIME for us to connect as a family. It is TIME for us to enjoy our family again.
I feel we have been doing a decent job at juggling family time and our need to work but it is taking its toll. We find ourselves feeling more like roommates and caregivers than husband and wife or Mommy and Daddy. We find ourselves feeling trapped.

Every 6 months I am faced with changing my schedule at work. This usually brings me a great deal of anxiety as I am not one for change. This shift in schedule also tends to take a toll on Michael as he also likes to have a routine.
This time it is different. This time I am looking forward to the change. I think for the first time in nearly 10 years of employment there.
With this change will come a bit of a financial decrease but the benefits far out way the lack in income.
Since Michael has been born we have only been on 1 family camping trip when he was less than a year old. We honestly have been fearful of taking him anywhere overnight as he hasn’t quite grasped the concept of an inside voice or how to behave himself in public {we are working on it believe me}.
We tend to do everything based on “is Michael going to have a melt down?” We assume he is going to have an issue because time and time again we face the evil stares from people when Michael displays his dissatisfaction in public places.

Michael has many autistic tendencies but the only way we are going to get him to learn to function in “the real world” is to go out there. Be apart of society and LIVE our lives.

No more will we live our lives for other people to make sure they are not “inconvenienced” by us. They can just deal with it. They can be as upset as they would like or give us the look of {can’t you control your child} all they want.
There are a lot of people, places and things we are missing out on.

It is our TIME to live life and set ourselves free of this prison we have created. This summer we are going to have A LOT of firsts. I can’t wait!!!!

{Can’t wait to see His Brain}

Those of you who follow this blog may read and think man this chick is bi-polar! I am up then I am down. I think that’s life. {Isn’t it?}
I have to say that having Michael has been one of the biggest challenges and yet one of the most rewarding things I have ever done in my life. Never predictable, Never boring.

This week we went to Michael’s neurologist. He informed me that he does not need to see us any more unless Michael starts having seizures {Thank the good Lord we haven’t}.That there isn’t anything more he can do for Michael.

Hearing this from him brought me relief but it also brought a bit of sadness. My gut reaction was {woo hoo! And suddenly changed to But why?}

Relief because it is one less doctor bill for us, but, sadness because there is nothing he can do for our little Michael. Michael has what he has and there is no cure.
I have known this but I find myself sometimes holding onto the possibility of “a cure”. So when I hear things like this from his doctors I can’t help but mourn a little bit.

We can treat the symptoms of what is going on with Michael. Michael’s case is being sent over to Chris Walsh Labs at Harvard University where they study PVNH and other neurological migration defects to find out why they happen.
I can now hold onto the belief that one day they will know what causes this defect to happen and that somehow Michael was a piece of the puzzle in finding this out. {Who knows maybe one day we will read about Michael in some medical journal, maybe Michael when he grows up will be the one to figure out why this happens} You have no limits my baby boy.

So,that chapter is closed for now, a new one opens and along with it comes Michael’s MRI. I can not wait to get it so I can pop it in my PC and stare at his little brain in all its glory and wonder.
We look forward to these changes. We are embracing the moment. We are treating the symptoms and pushing forward to new things in science.

{Find the humor...It won’t kill you}

This one is dedicated to all my friends in the SBH group.

Today I have been writing back and forth with other parents in an online group we belong to. We all share a common thread. Our children are all very special, they all have brain abnormalities.
One of the common things we all share with this abnormality is autistic behaviors. Over time I have mentioned the difficulty of the behaviors but, I have not mentioned the humor that can come along with it.
Ok, so I am sure you all have seen Rain man. I know those of you who are not in our position may think this a cruel analogy but it rings so true. In fact I love that movie and its very existence so much because it helps me step back and find the humor in it all.

Me “Michael do you want a sandwich?”
Mike “light”
Me “Michael do you need a diaper?”
Mike “light”

Me “Michael do you" …. Me interrupted..Mike “light”

Everything in Michael’s world revolves around a light right now.
When ever he hears an ambulance he yells “light” because they put a light on his finger to monitor his heart in the hospital. When we are watching Grey’s Anatomy everyone on the show needs a light.

Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light, Light

Sometimes I find myself breaking out in song “There’s a light…over at the Frankenstein place” from the Rocky Horror Picture Show. Just because I have to interact with the word so it doesn’t drive me crazy.
I suppose I could sing “this little light of mine” but I find the other more amusing.
Moral of this is, embrace the difference, play with the words, and laugh at it, Its ok go ahead and laugh, it is funny at times and this life is far to short for us to get irritated by all the little tics that come along with our differences.