What Boston has taught me....

As I watched the events of yesterday’s bombings in Boston unfold I couldn't help but think “How can I protect Monkey boy from all the ugly and bad in the world??”

Truth is…

I can’t…

I can’t protect him from every unpleasant or evil unfortunately; I don’t want to make him ‘scared’ of the world but rather aware.

I can…

However teach him: There ARE good people in the world, even in times of distress. I can teach him how to respond rather than react in times when the bad seems to outweigh the good.  I can instill in him that HE can be light in the darkness that surrounds tragic events like in Boston.  

For Monkey Boy it will be a little more difficult to teach him some of these things because of how his brain is wired.  When he’s ‘excited’ (good or bad) he instantly reacts- it’s what his brain tells his body to do- usually it results in a slap or punch to whoever is closest.  How will I teach him instead to respond, in a calm and thought out method? (I’m still working on that, only time will tell.) 

How do I teach him there ARE good people? Without exposing him to graphic images- I can tell him stories of REAL heroes, who don't wear capes, who selflessly help people who they don't know.  I can teach him to HELP, not to selfishly earn the title of ‘hero’, but just to help; because it’s the right thing to do.  He loves to help and comfort people even at the tender age of five- I can work to build that quality up in him so that he will continue to have the compassion and desire to be helpful, without recognition.  

I could honestly see in 15-20 years if he’s anything like he is now, in a tragedy like Boston, he’d be one going TOWARD the chaos; in part because of his reaction tendencies but also because he IS compassionate.  

What I can do in the meantime as he grows is shield him from the graphic images the media makes all too readily available- I CAN do that- for the most part.  He did happen to see some of the news coverage of Boston when we were out at a restaurant and decided he needed to sit next to me- I was facing the TV, all of which were replaying video from the blasts etc.  He asked what that was, I tried my best to shield him from it and change the subject.  Luckily, we left shortly thereafter and he was distracted and no longer paying attention to the screen. 

While I don’t want him scared of the world around him, I do want him to be aware of dangers that are present… there’s the basic, “Don’t talk to strangers”, “never leave your bag unattended” and stuff like that but I want him to understand that if he does see something ‘off’ to know it’s ok to alert someone who can check on it, be it mom, a police officer or other trusted figure~ to follow his instincts, if he’s uncomfortable with it- make someone else aware. 

Unfortunately, in the world and times we live in he will probably see more tragedies like Newtown, CT and Boston, MA as he grows up.  Hopefully he will only see them via the media- prayerfully I won’t have to worry about him reacting and not responding…

While there are many things I can’t protect him from, I CAN wrap my arms around him tightly, hold him, love him, support him and keep him as safe as possible. 

Remember tonight my lovelies, to kiss your children as they drift off to sleep- hell kiss them a few times before and after they’re asleep, let them know you love them!! Let them be YOUR light in the darkness as we go on with our daily lives in the wake of this most recent tragedy!! 

Window To My Soul~~

Good Thursday Afternoon my pretties!!! Hope the weather is not as crazy where you are as it is here-- we had 70 on Tuesday and today, it's snowing!! The wind is whipping so hard at my 7th floor office window it makes me think I'll see Dorothy and Toto any minute now~ and it's C O L D... Butt. Numbing. C O L D!!! I love winter- but these extremes, well they're extreme!!

That sums up the weather for the day~~ And next up in today's news.....

Well Monkey is starting his Kindergarten readiness at Early Start- and one thing we're doing to prepare is letting him go into class solo.  For two years I've gone in, helped him put his stuff away, talked w/the teacher, helped him wash his hands etc- Now I take him to the hallway and tell him good-bye, he kisses me and waves as he's running into his classroom.  Suddenly I feel unneeded~~ BUT this is HUGE for him.  He's doing so wonderful and is becoming so independent;  my goal after all,  was to teach him to be independent in this cruel world. Then I hear him holler-- "at da winnow!!" After dropping his (empty) lunchbox off on the table-- don't ask right now-- he runs to the window facing the parking lot so he can see me leave- and wave and.... blow a kiss before running off to start his day!! So although I may feel unneeded I do know I am wanted- by my independent Monkey! That fleeting second in the window means so much to both of us, it's become a daily ritual.

I've said I'm trying to make Monkey as independent as possible in this cruel world, I JUST said it in the paragraph above... I'll wait while you go back and read it... ya see it?? Ok now- why am I so adamant about that? Because Monkey has (this is hard for me to say much less type and admit) Monkey has brain damage- remember yesterday I gave you a quick intro into CMV? Well that nasty ole virus didn't allow my sweet boy's brain to develop like 'normal' *although I've been in medicine long enough and worked w/enough people to know NO ONE IS NORMAL~ only varying degrees of different* His official diagnosis is Polymicrogyria.  I know, it's another strange word I'm throwing out there for you but it means literally "many small wrinkles in the brain".  I'm sure you're picturing a brain in your head- get it? oh never mind! But you're visualizing the brain and you think... but it's supposed to have wrinkles and look like a nicely formed head of cauliflower- welll you're right but with Polymicrogyria (PMG) these wrinkles are smaller and less pronounced.  See what happens is during in uteru development the brain cells don't reach their intended destination causing the brain to be formed improperly.  This malformation appears as small wrinkles which don't process the information it receives like a typically formed brain does.  This can cause effects which resemble a stroke even.  Just like most disorders the severity of the malformation is what determines the symptoms and problems that impairments in these sweet babies.  

Symptoms of PMG can show up in swallowing and speech issues, reflux, seizures, Cerebral Palsy (CP) and lack of muscle coordination as well as the possibility of impaired cognition and developmental delays.  As expected since it affects the brains reception it can cause problems with hearing, vision, and breathing among other bodily functions.  The impairments depend also upon where in the brain the malformation occurs.  To learn more about the parts of the brain and their function- click here... Brain Parts and Function.

Monkey has hearing loss, visual disturbances, seizures, muscle tone issues, speech delays, and behavior issues due to his PMG.  Knowing that it's present however has helped to put the pieces together and gives us an idea of how to help with these individual impairments.  

So how do you find out if your child has PMG?? Usually PMG is diagnosed secondary to another condition you're seeking treatment for your child about; CP, Epilepsy, hydrocephalus, macrocephaly, microcephaly- and many more.  An MRI is ordered and the PMG is discovered then, however it can still be difficult to diagnose- Monkey has several different diagnoses on his MRI reports, depending on who was reading it that day.  

What does this mean for Monkey and other kiddos with PMG?? Each child is different due to the degree of their PMG- however, for my boy so far, it means he learns different, has to be reminded over and over again of some things but can memorize entire movie scripts, it means he gets a little wild sometimes but is one of the most loving children you'll ever meet.  It means I get excited every time he does something others might think menial.  We celebrate the little things in our house.

Again I'm not an expert on the subject~ in fact due to those multiple diagnoses I'm just learning about PMG from our last MRI report from 2010.  However, there is an excellent, family oriented and informative page at PMGawareness.org.  PMG is much more involved than my quick synopsis but I wanted to introduce you to the disorder and give you a snapshot of Monkey and our daily venture...

Stay warm my lovelies and enjoy your Thursday evening!!
S~S