Thursday, July 19, 2012

The One Where I Tell You Who I Am

So I've had this blog for a long time, and haven't ever gotten around to posting in it.  I read mom blogs, autism blogs, special needs blogs, fashion blogs, recipe blogs... and I have an interest in all of these things.  It was tough trying to peg the sorts of things I wanted to write about myself, that maybe someone out there would find moderately interesting. 

I also think writing the first post was something I dreaded because I feel like you need to sum up who you are reading.  So here goes:

At 26 years old, I am a mother, fiancee', homemaker, and part-time actress.  I've also been, at various other times in my short life, a wife, restaurant manager, waitress, bartender, full-time actress, student, sorority girl, musician, drama teacher, and camp counselor.  Right now, my biggest role is advocate for my beautiful, amazing, brilliant, and weird little guy.

My son is 4 years old.  He was born perfectly healthy looking, after a long and exhausting vacuum-assisted labor.  Yuck.  That first night in the hospital he wouldn't sleep, and couldn't stop crying.  As young parents, my ex and I were given the "Awww you poor things, he's just a baby - that's what they DO!" speech.  The next morning we took pictures as he started doing little poses with his hand straight out in front of him.  And the more we tried to feed him or hold him we noticed little odd things about his breathing and behavior that just didn't feel right.  As the nurse took him off to the special nursery to get checked out one last time, she gave me a little pat on the head and assured me that it was time to get the carseat and go home - I might even want to grab a bite to eat since it wouldn't take long to get him checked out.  Just to placate the silly new parents, she'd have a doctor look at his breathing.

As I was eating my Applebees carryout, in comes the nurse, with my OB.  And they don't pat me on the head this time as they are being followed by what looks like a giant space capsule with my baby inside it, and two ambulance attendants.  They inform me that my baby has a bleed on his brain that looks very, very bad.  And that I have two minutes to say goodbye as he'll be taken to Hopkins by these strangers and I can't follow them now.  My head and my heart exploded, and I really don't remember much after that point besides them apologizing and telling me there was no way I could have known... that those cute little poses were baby seizures and the crying was from the increased pressure on his brain.

The next day we were at John Hopkins Hospital, where the Little Man started the long fight to get better.   Official diagnosis after his arrival was a Grade IV interventricular hemorrhage (IVH), which is the most severe brain bleed for babies.  Most babies who have this IVH are preemies, but our son was full-term, so they had no explanation for "Why?".  The IVH would cause hydrocephalus, and the seizures we'd seen earlier.  Before I'd even checked out of the hospital he was being prepped for a temporary shunt surgery to clear up some of the blood in his head.  That led to blood transfusions, and then eventually a permanent shunt at 6 weeks old.  At this point in my life, I was not working and my ex was a mortgage loan officer.  We could barely afford groceries, let alone a very sick little boy.  Luckily we were approved for state insurance and his surgeries were covered, but the experimental seizure meds he would have to be on for a long time were too expensive for us.  My OB came to the rescue and gave us a lifetime supply of the anti-seizure meds so that the hospital would allow us to bring home our Little Man at 6 weeks and 2 days.

Since then, life has been a whirlwind of medicines, therapies, job-hunting, and parenting.  My ex and I were never able to make it work, for lots of reasons.  We split up shortly after Little Man's first birthday.  I worked waiting tables and odd jobs to make ends meet, and ended up being promoted to the asst. manager of a restaurant chain in early 2010. 
In 2011 a doctor looked me in the eye and asked me how I would feel in ten years when my son had made no progress developmentally because I was busy working and not able to give him the help he needed.  The doctor was a jerk, but I did need to make some serious choices for my son.  I had recently met and been dating the most amazing man... and together we decided I would move in with him and leave my position at the restaurant.   It was a gut-wrenching decision to give up so much of my Independence (and income!), but I knew it was something I needed to do.  In October of 2011 we were engaged, and I've never been happier or more secure in a relationship in my life.

At four years old, Little Man's "symptoms" mirror a lot of what you would see in an autistic child.  Although he has been evaluated at many top hospitals, they were reluctant to call him autistic because he has the brain injury.  He was loosely placed in the category of PDD-NOS, because there was just no other diagnosis for him. 
His seizures at birth, which thankfully he no longer has, caused a significant muscle weakness on his right side.  He walks with a limp, and his right arm is always bent slightly for a resting position.   For several years he would wake up two or three times a week throwing up, but after a shunt-revision last September it has decreased to maybe once a month.  He started walking the day after his third birthday, and still does not talk but makes his own fun sounds.  He chews on every.thing.  Everything.  But eats nothing except chicken nuggets, grilled cheese, bread, fruit snacks, or cookies.  He flaps and bounces when he's excited.  He hates strangers.  He is obsessed with Thomas the Tank Engine and Caillou. 

And that bring us to today.  Welcome to my blog  :)

1 comment:

  1. WOW! THAT is not what a new mom wants to hear/experience.

    I think how clueless we were with our first kid. THAT is baptism by fire there.