Friday, April 15, 2011

A Becky-shaped void . . .Two Years have past.

There are no words - seriously what would you say anyways?
Whoa Nellie, would you look at that superb fashion sense?  I mean does it get any better than the polyester and and sweat pants (with new boots you fortunately can't see.)  This photo was taken in the late 70's. . . but I am guessing you figured that out already.

There are three people in the picture who are no longer with us, two obviously being my Grandma and Grandpa Betancourt and the third being my older sister in the rockin blue sweat suit.  I am the much cooler one on the far right.

I miss them all but my grandparents have been gone for 10 and 20 years and lets face it, they would both be about to turn 101 if they were still here.  Not that I wouldn't give anything to still have them around.  Miss em and love em always.  My grandpa was a bad @** in his time, especially for a short dude.  My grandma was hard working, loving and kind and put up with- well- him.  To give you an idea of his personality - he used to walk around singing "Oh Lord its hard to be humble, when you're perfect in every way.  When you can't wait to look in the mirror, cause you get better lookin' each day."  Yes he did.

Halloween in very cool, unGreen, plastic costumes with masks that will kill you because you can't see out of the sweaty eyeholes
 But the person this post is about is my sister Becky, who passed away two years ago today.  I still can't believe she is gone.  I still laugh at something and think I need to call her and tell her because she had a great sense of humor and would laugh at everything.  I still think of her first when I need an emergency babysitter who will work super cheap.  I still want to tell her to get her smack together and have the great life she deserves.  I still wish I could turn back time and tell her "Yes, I will drive 30 minutes to come and get you and take you to the post office so you can copy some insurance papers and mail them since your car was in an accident, even though I am 7 months pregnant with my fifth child and I have three kids in one preschool and one in another who will get out at noon."    I said no and that was probably the last thing she asked me for help with before she died.  I am not sure I will ever forgive myself even though it was a justified no.  It was still a no.

It has been two years and every three weeks since she passed I go on my Blackberry and resave her last voice mail message to me.  It was sent about three weeks before the end.  It was nothing special and that is what is so great about it.  Of course she probably wanted something because she rarely called or returned calls the last year, but it was not a sad message or dramatic, just normal.  If I listen to it I can pretend for just a few moments that she is here still.  Just 30 minutes away, not an eternity away.  Probably at my brother's house because she liked him better than me, no really and I don't blame her.  He is more fun than a barrel of monkeys and didn't lecture her as much as I did.  I was full of This-is-what-you-need-to-do-to-get-your-life-in-order advice which she never listened to but acted like she did so I would shut the bleep up.

I just wanted her to be happy.  But you can't force someone to be happy.  And you can't fix them. Or change them.  You can only love them for who they are. All crap included.  She accepted mine that's for sure.  I wonder if I will ever not feel that empty part of my otherwise joy-filled life.  There is a Becky shaped void that will probably go unfilled forever.  I am so glad to know she is with our kind and merciful Father, or close to it (sorry, but I am Catholic.)

 She is free. She is free from all of it.  All the horrible stuff of the world.  The traffic, the noise, pollution, mental illness, drugs, things that smell bad, being overweight and ill-treated for it, anxiety, being used by people she thought were her friends, confusion, disappointment and disillusionment and most of all the self-loathing we all have at times but she lived with in huge segments of her life.  Also, she hated mean people and did I mention things that smell bad?  In her case that would be cheese.  She hated the smell of cheese.

The Fab Four doing popcorn and Walt Disney on a Sunday night 70's style

If you were here today Beck, I would hug you and sit on the deck drinking beer while you played your guitar. But first I would lock the kids in the house because they would get on my nerves which is why I need the beer and then we would argue about politics and religion and who worked out more this week.  We would laugh at some dumb old joke or something Mom said (sorry Mom, but you do say funny things!) and then finally I would let the five out to run in the yard and you would laugh and say "I gotta go  now, its tough being single with no responsibilities at home."  Or something like that.

Becky playing guitar - I have no idea who that random guy is?

For now I will have to be content with your message on my phone or listening to your Cds.  At least I have that but it really isn't much.  It isn't enough but it doesn't matter. How do you fill the place of a person who was one of kind?

Monday, April 4, 2011

The Hardest Part . . .

Sometimes people ask me what the hardest part of having a child with Autism is . . .actually no they don't.  Probably because they are worried about upsetting me. 

 However, everyone who has spent any amount of time around me knows that I like to talk about things-that need-to-be-talked-about-but-people-avoid.  People really want to be validated and asking a parent of a child with special needs a question about their child or situation would probably touch them in that way. It would be the rare person that would be offended by a question of this nature - it shows sympathy, interest and an awareness of the other person's difficult situation.  It's probably easier for me, being on this side of the fence, to do that however.

  Once you are a member of a "club" you feel like you have permission to do and say things that you can't if you are not a member.  For example, new mothers of multiples are always hit by a blizzard of comments and questions about their kids and they respond by either being annoyed, flattered (for awhile) or overwhelmed.  Being a mom of HOM's (higher order multiples-ie triplets or more), I feel justified in asking questions and when I occasionally get an annoyed expression from "new mom of multiples,"  I just point out my four same-aged kids on the other side of the playground and get a look of  "Holy cheese Batman!  She does know what she's talking about."  Ha ha I live for those moments.  Smugness in any form irritates me.

 From other people that is.

But back to the point at hand.  The hardest part of having a daughter with Autism, for me, is two-fold.  Last night I was watching an old movie called The Miracle Worker, about Helen Keller.  Being blind and deaf seems insurmountable to most of us.  Add onto that no technology, modern therapies or even electricity!  When Helen was a child close to the age of my daughter is now - about 7, her teacher Anne Sullivan came to live with her and bring her out of the darkness so to speak.  She was locked in a lonely world by failure of her senses.  My daughter is locked in a similar world, though her senses work.  Honestly, I sympathized with these poor parents who had no idea how to reach this child other than to spoil her.  That is so hard.  You think to yourself -"well she doesn't get to do what all the other kids do so I will just let her have, do, get away with X, Y, or Z"  Things you wouldn't think for your typical kids.  I can especially relate to the scene involving meal time where Helen is running around the table stealing peoples' food and eating like an animal.  You may remember my chicken nugget story.

However, the hardest part of our situation, to me, was illustrated in the movie when Helen's teacher was trying desperately to help her make a connection between words and objects.  And it finally worked - she ran to her mother and spelled "MOTHER" in her hand and hugged her.  I am glad no one was watching me at that moment because I came a little unglued. 

Despite her disabilities she still knew who her mother was, she loved her, she knew her mother loved her and would protect her and take care of her.  I was jealous.

Yes I have five kids and the other four understand this. But one, does not.  She knows I am her mother, she "loves" me in her way.  She can't really show it.  I have been working with her on how to give a real hug and kiss for a long time and she is starting to do it on her own finally but she would never seek me out for anything other than a need such as thirst, hunger or a visit to the restroom.  It hurts.  I want her to know that I think about her all the time.  That I will protect her with my life.  That I am the one she should run to when she is sad, lonely or hurt.  If she gets hurt or is scared she just suffers alone.  She can't tell me what is wrong and she would just as easily run up to a total stranger and take their hand to guide them to some object she can't reach because its too high. 

Can I explain to you how hollow I feel inside when I go to my daughter's class as the room mother and she doesn't even look up when I enter the room?  Or when the other kids in her class (yes, all with autism) run to their moms with excited expressions of love even when they don't express it well with words?  It's my own little Hell that I have learned to accept but it still hurts, every. single. time.  You can't spend all your time sad and Why me-ing though right?  So it stings and you try to ignore it because other people aren't comfortable with your pain.  I get that.

The other part that I find most difficult is when my other children meet milestones that I know she may take years to get to if ever.  Let's be honest.  She will always live with me.  She will probably not go away to college or get married.  It doesn't mean she wont be happy and have a good life but it's not what dreamed for her when she was born.

Maybe she realizes this, or not, I hope.  But I probably won't ever know.  One day soon I will write a post about all the blessings special needs kids can bring into your life.  There are many.  Parents and teachers of special kids know this well.  But not today.  Today I am not in that place.  Today I am thinking about what isn't going to be and praying desperately to be proven wrong by that very smart girl who is locked in her own world. 
April is Awareness Month.  Maybe ask a question of a friend or acquaintance who has a child with autism. 

 1 in 110 kids- people.  Think about that.