Thursday, June 13, 2013

Kickin' Butt and Takin' Names

I've struggled with writing this next post for a while now.  It's not really my story to tell so I've withheld saying anything about it, but since this is like my diary I kind of want to write something so I have it in the 'memory bank'.  These are merely my thoughts on the subject, right or wrong.  They might be so far off the feelings of his parents and I hope they understand that that's okay.  I hope I have the main details correct, I'll do my best to remember.  But first and most important...

I have a nephew.  An amazing nephew.  A nephew who happens to be autistic.  A nephew who's brain I will never truly understand.  A nephew who has been dealt a raw deal more often than he ever should have.  A nephew who is stronger than most people I know.  A nephew who has taught me to be a better person even if I screw up once in a while.  A nephew who would totally forgive me when I do.   A nephew whom I believe loves me in his own way and I love him in his own way.  My nephew is Sebastian and he's pretty bad-ass.


There are two things about Sebastian that I want to touch on here.  This is the first story.  A couple of years ago while prepping for dental surgery at a huge kids hospital here in the Golden Horseshoe it was discovered that Sebastian had a hole in his heart.  Immediate worry ensued.  How could this have gone un-diagnosed for so long?  Could this be harmful to him?  What were the doctor's plans?  Would they fix it?  If I'm not mistaken it turns out the doctors didn't think it was too pressing of an issue and let it go.  Now a couple of years later it was deemed major enough to do something about it.  The hole was creating underlying issues for my little buddy's heart.  It was working too hard and had become enlarged therefore corrective action needed to be taken.  There were two options; one of which was a lesser, invasive type.  They decided to move him to the renowned Sick Children's hospital in Toronto for the less invasive procedure.  As the day neared everyone's nerves were frayed and on edge but this was Sick Kids and they weren't doing major heart surgery (in our naive little world that meant they weren't opening up his chest) so he was going to be just fine.  That's what I told myself.  And then it went bad.  And they immediately stopped the procedure.  And the news got a little worse.  The hole was massive in terms of heart holes and there also happened to be a second one they hadn't been aware of.  Turns out open heart surgery would be his only option.

Move ahead one month and Sebastian's parents get the call that his surgery will be sooner than they had expected.  Is this to be looked at as good or bad?  Oh God, it's all becoming so real.  This is terrifying now.  I'm just his aunt (I can't begin to fathom what his parents are feeling), but I'm on edge.  I have an underlying melancholy lingering around me.  Surgery day approaches, I go to work, I leave work.  I won't be any good there, I'm too busy texting my sister in law and my sister for play by play updates.  Turns out he's a "bad motherfucker" and the surgery goes so well they are able to patch the holes with one mesh and finish up well under the time frame they expected.  His recovery overall goes smoothly and he's released from the hospital after two days!!

It's been just over a month and this kid has made leaps and bounds.  He's his usual self.  He's content showing off his battle scars to anyone who asks, and rightfully so!  He's a human machine.  I'm in awe.  He surpassed the expectations of others and then some.

Now to the second story about Sebastian that I want to share.  Up until last year Sebastian was enrolled in our public school system.  He was placed in the Special Needs classroom with periodic integration into the regular classes (I think).   But they weren't doing anything special with him.  And by that I merely mean they weren't teaching him at a level he was capable of.  He was just cruising through the system, not really getting ahead.  If he remained there he'd be forever stagnant.  A couple days a week he was removed from school to attend a program geared to Autistic children and their needs.  He was thriving on those days and because of those days.  Nothing he was accomplishing was as a result of our public school system.  Last year some of the people who ran that program decided to open up their own private school geared toward children with Autism.  It was decided by his parents that this is where Sebastian needed to be to grow, no matter what sacrifices they had to make or what the costs would be.


One years tuition is pretty much the equivalent of a year of University.  Why would they be willing to do that you ask?  Because he can write now.  He can do math!  Math!  Fractions and time tables.  All things no one thought possible at one point.  How wrong we all were.  His social skills have improved ten fold.  He is more outgoing and now asks to get involved.  He is sharing his feelings.  He instigates conversation.  Huge strides!!

So I'm posting all of this because I want you to know my amazing nephew Sebastian even if only in a teeny, tiny way.  I wanted you to understand why I'm sharing his Scholarship for Sebastian page.  His parents try to do things throughout the year to help raise money to offset the tuition costs they incur.  They try to add new ideas every couple of months and come up with creative things they can make and people can buy.  It's so much nicer than just asking people for money - a give and take of sorts.  But they can use all the extra help they can get.  Every bit they receive makes it easier to keep Sebastian going at this school.  And this school is proving they have what it takes to give these kids a life they deserve and are capable of.  So if you would be so kind as to tap dance (via your fingers of course) on over to the  Facebook page (they have set up to help raise funds) and see if there is anything on there that strikes your fancy.  There are great ideas for end of the year teacher gifts, birthday presents, homemade gifts for Christmas, you get the idea.  Again, they are always adding new ideas and items so please click the LIKE box so you can be notified when new stuff is added.  And if it really isn't asking too much, please share the page with your Facebook friends and family.  This little guy really does deserve every effort we can afford him, and then some.



1 comment:

  1. my heart is very full. Thank you. <3

    ReplyDelete