Saturday, July 6, 2013

Let's Talk

The mess of thoughts in my mind right now reminds me of the Lion King, when Simba is chased from the Pride Land by hyenas and tumbles down the cliff into the thorny brush below.  He is climbing over and under trying not to get hurt, and terrified of what is chasing him.  I am so sick of writing sappy blogs about my emotions, but as my favorite outlet I seem to resort back to writing each time I need a release.
In October last year, we received the MRI results and first learned of Brady's condition.  Neither myself or Derik really accepted or even comprehended what those results really meant.  We were lost, confused, and completely in denial.  The neurologist who gave us the diagnosis used large medical jargon that we were not familiar with at all.  We didn't understand anything more than he has a developmental delay.  As time has gone on, it has become more clear to us just how severe this disease actually is.  Brady's brain didn't develop correctly.  There is nothing we can do about that.  We can not provide a fix for the problem, and there isn't even a "band-aid" that we can put on this to make things better.  All we can do is work with what we know and have.  What we know is that the front, right lobe of Brady's brain doesn't function the way most people's brain would.  The front, left lobe is also affected, but we know that it is not to the same degree that his right lobe is affected.  We know that the doctor is shocked that Brady hasn't experienced seizures yet.  However, we do not know when he will begin experiencing them.  We do not know what type of seizure to expect or how often to expect them.

"And all the while I feel like I'm standing in the middle of a crowded room, screaming at the top of my lungs, and no one even looks up."
Kate Winslet - Titanic

It is a strange feeling to feel like people are listening but not hearing you.  I feel just like that a lot.  People aren't sure if they can ask questions about Brady, so they dance around the subject.  People aren't sure they understand his limits, so they don't ask.  People don't seem to understand that I feel alone in this.  I feel like, with the exception of a handful of people, most do not even want to acknowledge that this is hard on our family.  I think a large part of this is that his diagnosis has come in pieces instead of a large BAM type diagnosis.  I also think that people attribute a lot of his disorder to "baby delay" and that isn't really the case.  He will be delayed his entire life.  This isn't something that he will catch up and move on from.  I wish I could help people understand, but I do not know how.  
I found a great connection and comfort in the support group.  I am so so thankful for the parents who have joined and who have provided me a place to field questions, seek answers, and find parents just like me... confused, seeking help, and dealing with the daily ins and outs of PMG.  
The internet has become my refuge.  I turn to it when I need to know more.  I turn to it when I am seeking comfort.  It has helped a lot, and the knowledge has brought peace and further heartache.  I want to know all I can about Brady so that I can help him.  

I thought this might simplify things for people.  I am going to provide a list of the things that I have heard enough of and the things that I wish people would ask!  This is not meant to insult or offend anyone.  If you have asked me any of the following things... you are one of MANY.  I am not bothered by these things, just feel like I am saying the same things over and over again.

Does Brady take his glasses off??
NO, he leaves them on.  I get asked this question more than ANY other.  A baby in glasses is unusual, and I understand that.  This is the first thing people notice about him, because let's face it... he may be the cutest baby to ever wear glasses!  He can only see about 6" away from his nose without his glasses, and he learned quickly that with glasses on... he can see!  He only takes them off when he is trying to rub his eyes or he has been crying.

His eyes aren't shaking much anymore, has it stopped?
NO, the nystagmus is something he will have the rest of his life.  He will never grow out of it.  His optic nerve is much smaller than it should me.  Since there is no way to fix a small optic nerve, he will always have nystagmus.  It does it worse when you are out of focus.  His glasses have helped things come into focus. However, his glasses did not fix the problem.  His eyes still jump, and they always will.

Is there some type of medicine or surgery to fix this?
NO, there is absolutely no way to fix your brain developing incorrectly.  All we can do is provide helpful therapies and do testing to manage the existing issues.  

Is he crawling yet?
NO, and I think this is the question that bothers me most.  People do not realize how bad I want him to crawl, and they do not realize how unlikely it is that he will crawl.  He will likely walk without crawling, but we have no way to really know what will happen until it does.

What exactly is wrong with him?
NOTHING!  Nothing is wrong with him, he is my perfect angel, and everything about him is exactly how God wanted him to be.  His left arm and leg do not have the nerve response in his brain like his right side does.  The right side your brain affects the left side of your body.  Since his right lobe is affected by this, he is unable to use his left arm and leg fully.  We do not know the full extent of what he will be capable of.  We do not know if he will ever be able to use his left arm correctly, but have accepted that he will likely not.

He doesnt talk yet?
NO, he does babble some, but no words yet.  I want desperately to hear him say Momma, or I love you, but he hasn't.  The fact is, we do not know if he ever will.  We are trying to get him into speech therapy, but we do not know if it will help.  Being that both front lobes are affected by this disorder, we aren't sure that his cognitive abilities will warrant speech.  I still refuse to believe he will never speak.  

A few of the things that I wish people would understand....

This is serious.  No he doesn't have terminal cancer, or a brain tumor, but I do not want to hear how this could be worse.  I use this mentality to ease some personal discomfort on occasion, but I do not want to hear it from others.  

You can not erase my guilt.  I have to deal with this issue on my own.  Telling me to get over it will not help, but probably make me feel worse.  Now I feel guilty for making it about me.  

Ask me questions.  When people do not ask, it feels like they do not care.  Asking questions will not offend me, and I am happy to talk about it.  Talking about it makes me feel like I am not alone, and that others care that our family is going through a lot. 

Suggesting medical advice is complicated.  Believe me, I have done the research.  If there is any available thing I can do for Brady... I will.  I even told Derik that I would like to fly us to Seattle to see the leading PMG specialist at the Children's Hospital there.  I will do whatever I can for my son, so please do not ask if I could do more.

He is NOT autistic, he does not have CP or Downs, he isn't epileptic... so your brother's best friend's in law's child who is going through something... is likely not going through what Brady is.  Please do NOT compare my son's situation with someone else's.  It ISN'T the same.  

I guess that about takes care of everything on my mind right now.  Please know that I love all of my friends and family dearly, and I did not mean to insult anyone who has asked any of the above questions or made any of the above statements.  We need all of the support we can get, and I do not want anyone to feel pushed away.  

 - Jessica