Friday, March 15, 2013

#92 He Isn't Afraid of Down Syndrome

All That Matters About People with Down Syndrome

March 21st is World Down Syndrome Day.  The purpose of this day is to raise awareness of individuals with Down syndrome.  I thought, what better way to do this then answering the top five questions I have received about my brother, Jonathan, over and over again.  

Here we go.

My Top Five Questions About Down Syndrome

1. How do you get Down syndrome? In other words, Is it something in your genes?
Down syndrome is not something you can catch.  It is not something caused by anything that the mother did right or wrong during her pregnancy.  Having someone with Down syndrome in your family does not make your chances of having a child with Down syndrome greater or lesser.

2. How should I act around someone with Down syndrome?
Treat a person with Down syndrome exactly as you would treat any other person, however, that is assuming that you treat the average person according to the Golden Rule.  My brother does not want or ask for special treatment, although his personality may make you want to give it to him.  He is privy to an over abundance of positive attention from the female population.  And of course, he'll never turn that down. 

3. Can he talk?
It took a long time for Jonathan to be able to talk in a comprehensible way using complete sentences, however, other individuals with Down syndrome speak very clear at an earlier age.  Their ability to speak is related to the level that they function.  There are high functioning individuals with Down syndrome who speak clearly at an earlier age, who can communicate easily on their own, and who are able to attend regular public school in an inclusion classroom.  There are others that are lower functioning who may never talk and will have to attend a school that is fit to help with their special needs.  Jonathan falls in the middle.  He will turn 21 this July and only within the last four or five years has he really begun to blossom in his communication.  He has always been able to string together a few words, but only over the last few years has he been amazing my family with expressing himself and how much he understands about the world around him.      

4. Would he hurt me?
Jonathan would never hurt anyone.  He is gentle, loving, and caring.  Typically anger and uncontrolled emotions are not responses I've seen as a major piece in individuals with Down syndrome.  However, stubbornness certainly is.  Sometimes it can be avoided, however, there are certain triggers that will make a person with Down syndrome shut down.  At that point, I'm pretty sure you would have better luck with a stubborn mule than with a stubborn person with Down syndrome.

5. What is his life expectancy?
Years ago, individuals with Down syndrome were treated horribly.  They were institutionalized and put in places where they could not flourish and embrace their full life potential.  Therefore, at that time the age expectancy was very low.  Today, due to the way our nation has chosen to invest in individuals with special needs, the life expectancy of someone with Down syndrome is about 60-years-old.     

There is no way I could end this post here.  No way I would sign off by giving you the textbook answers to these questions without also letting you know the deeper emotional view of knowing someone with Down syndrome.  

That's why I've comprised this list:

The Top Five Things I Love About Those With Down Syndrome

1. They give the best hugs.
You will never see Jonathan and not get a hug.  It's not a 'pat, pat, hello' hug either.  It's an 'ohmygoodness, I'm so glad to see you' hug.  It's a Pop hug.  It's sincere.  Even better than that, if you want another, he'll give it to you.  

2. They will never judge you, so you can be completely yourself around them.
Best example of this?  Jonathan is the only person I will do a workout video with.  I've currently been working out to "Hip Hop Abs" videos.  I won't even let my hubby in the room when I do these workouts, because I know how truly ridiculous I look jumping around my living room in workout clothes.  But Jonathan?  He's always invited in.  And although he is just as quick as anyone else to make fun of me when I look silly, I know he is never judging or comparing me to anyone or anything else.

3. They love life.  
It's so easy for us to mope and complain about how we had a bad day.  About how we aren't getting what we think we deserve.  About how we are so stressed.  Someone like Jonathan never has one of those complaints.

Sure, he has his moments of moodiness, of sleepiness, and of wanting to be alone.  But more often than not Jonathan is always up for adventure and fun.  He's ready at a moment's notice to do whatever you want and is always the best partner in crime.  He is free loving and carefree.

He makes it his purpose to make you happy, to have fun with you.

4. They love the best things in life.
'I Love Lucy', McDonalds, swimming, trains to NYC, Christmas, concerts, plays, taking pictures, laughing, eating, relaxing, ice cream, Starbucks, going to church, shopping, staying up late, going out for breakfast, making funny faces, wrestling, bowling, talking on the phone, going for walks, watching TV, hamburgers, bacon, cats, dogs, going to the movies, helping friends, the Macy's Thanksgiving Parade, parties, weddings...

just to name a few.

These are things that make Jonathan's day.  They'll light him up and get him to talk your ear off until you do one of them with him.  

5. They love to dance, sing, smile.  Shamelessly.
This is my favorite.  A world without any of these three things is not one worth living in.

A world without people with Down syndrome is not worth living in either.

Tuesday, March 12, 2013

#91 He Knew My Grandfather

This weekend I did a bit of organizing/cleaning my house.  The primary goals were: 1.) to clean out the spare bedroom on my second floor which had become a 'dump room' and 2.) to move some bookshelves up to a room on my third floor attic.  

I was amazing.  No, really, I was.  

I have two wooden bookshelves my grandfather made for me when I was younger.  Since I've been married they have resided in the spare room.  On Saturday, I cleared them completely off and moved their holdings to an empty room on the third floor.  I lifted the corner of the smaller of the two bookshelves and decided instantly that there was no way I was moving it on my own.  

I forgot to mention that hubby was working this particular Saturday.  I did my best to be patient, to wait for him to come home and let me pretend to help him move the shelves.  

Regretfully, the truth must be faced.

I require instant gratification.  I try my hardest at waiting for things to be accomplished in my hubby's time table, but then my personality overtakes me and I have to make it happen on my own.

So I lugged and balanced and inched the smaller of the two bookshelves up the steps to the third floor.  When that fiasco was done, I concluded I would wait for hubby to get home to move the second and larger shelf.

When 4 o'clock (daylights saving time adjusted) arrived and hubby called saying he would be stopping by the gym before coming home, I naturally decided to risk death and attempt to bring the larger bookshelf upstairs.

This is all to say that in moving the bookshelves I made a sentimental discovery.

While flipping the bookshelf over because I couldn't control my curiosity of wanting to see if the original pink paint remained on the underside, I found something extra left by my Pop:

It's funny how small words like "Love, Pop" can take you years away, back to a person taken too soon, surrounded in the memory of love so unconditional.

My Pop's entire world could be summed up into one word: Family.  He was rough around the edges to anyone else, but his family was his everything.  No matter what, Pop made it a point to be at every one of his grand kid's events, no matter how big or small.  No matter how sick he got, he was there.  My brothers and I were spoiled, but not rotten, far above what we were due by Pop (and Gram).  My favorite example of this occurred each year at our birthday parties.  My three brothers and I are all summer babies; Joel and Jon both born in July, Justin in August, and my birthday in September.  As is the usual custom, children get gifts on their birthdays.  Of course, Pop and Gram gave gifts.  But gift giving with Pop was always show.  If he wasn't teasing you that he had forgotten about buying Christmas gifts (and heading out the door with Gram in jest), he was making sure to get more than everything you wanted so that he could sit back and smile as you screamed your head off in excitement.  For birthdays, he made sure the birthday child was overwhelmed with love by gifts, yet, he'd always pull the other three of us aside and hand us a tiny present of our own.

It's no wonder that today my love language is gift giving.  

We were given an outpouring in material things and also that one thing you can't ever hold, can't ever say enough, can't ever get a true glimpse of its abundance: love.

Pop didn't just give hugs, he owned them.  He would cling to you as if he would never hold you again, and you knew in his arms that you were truly loved.  He held pride in his family, and only on the occasional times when he would volunteer to pray at Thanksgiving or Christmas dinner were we privileged to hear his sincere thanks to God for the one thing that truly mattered: that He had kept him on earth for one more year to enjoy another celebration with his family he loved so dear.

Pop will be gone nine years this May, sometimes it feels like it has been forever, other times I can't believe he is gone.  I'm grateful for the tiny reminders of him like notes on my bookshelf and old pictures of him on my fridge.  They instill in me the desire to give like him and love as he did.    

My mom, Pop, and me at my high school graduation, 2003.

Saturday, March 2, 2013

#90 He Says I'm His Favorite Violinist

Technical difficulties have lead me from having this post exactly the way I wanted it to then, nope no more.  So I'm going to try my best to recreate what once was.  If it doesn't feel authentic, that's why.

When I was in sixth grade I told my parents that I wanted to play the violin.

Perhaps it was boredom that sprung about the desire to want to tackle another instrument in addition to the piano which I had been studying for several years, or perhaps it was the fact that I have never been one for hobbies such as sports, dance, or any activity that required a lot of movement that could result in my being out of breath.

Today I'm still shocked that my mom said yes.  Not because she is an unmovable ogre who refused to let me pursue different hobbies, but because when asked why I wanted to play the violin my answer was: "Because it's pretty".

Looking back I suppose I'm lucky she didn't say, "The moon is pretty too, would you like to go there?"

But the joke is on her.  I would have agreed, eagerly.

It's hard to express to parents how much they have to push their child to stay devoted to an instrument during the beginning stages of learning it.  While today I am the one who can play Bach and Vivaldi concertos on the violin, my mother is the one who gave life to the passion that vibrates from my strings.

I began learning the violin through a video course and it was painful, wonderful, strange, and perfect all rolled up together.  Given the chance today, I don't think I would choose a different way to have learned.

My mother sat through every lesson with me, insisting that I follow every order of the conductor while persistently correcting my errors.  Lesson learned?  If your child wants to learn a difficult instrument, and you want them to stick to it, you should probably plan on learning it too.

After two years of learning with the TV in front of me and my mother spitting out corrections from behind, it became time to establish contact with me, my violin, and a real person.  Quite shocking to my mother and myself, the violin teacher at my local mall pronounced me to be no longer a beginner, but at an intermediate level.  She dropped me in the middle of the Suzuki method books and within months had me auditioning for an orchestra an hour away from my home.  After a crushing defeat in my first audition, I was sure my life was over.  Most girls my age were crying over boys and I was crying because I didn't make it in an orchestra after only a few months of real instruction.

By the end of that year, the perfect orchestra for me came my way: an orchestra a half hour from my home comprised primarily of retired senior citizens.  The better part of three years was spent in their company and I wouldn't have traded it for any more advanced placement available.

I wish I could tell you that this story gets exceptionally better here.  That I advanced and amazed.  But the rest truly isn't so fascinating.  Music was my only passion at the time, other than my hubby who I had been going with for a little over a year.  It was only natural that I went on to study music with aspirations of becoming a professional violinist.  I studied at a fantastic college with extremely talented instructors, including but certainly not limited to, my private violin instructor, Michael Ludwig.  He directed my course in music, and with a great sense of practicality and kindness he gave me a mental picture of what life as a struggling musician would be like.

That said, I slowly let go of my grip on the dream of becoming a professional violinist.  While music still held a place of importance in my life, it slipped little by little down from a place of prominence.

This leads me to ultimately why I began writing this post in the first place.  Recently, I had to have my violin repaired because it had a crack in it.

This is not something that any violinist ever wants to see in their instrument that cost more than their first car did.  In my mind, this discovery equated to what a mother would feel like if she stood by and watched her five-year-old climb onto the staircase banister, then slide down, and crack his/her head on the hardwood floors.

"How on earth did I let that happen right in front of me?"

I don't know what the mother would chalk it up to, but for me I could only think one thing: neglect.  A lack of attention to the instrument that had once dominated my entire life led to this.  It could very easily have been just one of those random things that happens, like the time in college when my bridge snapped in half as I was tuning my violin.  Unfortunately, I wouldn't let myself get away with such an easy out.

By the way, the bridge snapping in half was not a fun experience either.  Just in case you were wondering.  I consider it one of the top five scariest moments in my life.

While most musicians in limbo might return with wild excitement to their instruments after being inspired by a performance of Itzahk Perlman or the Boston Symphony Orchestra, this crack in my violin impacted me greater than either of those could.

It was a wake up call that I needed to make this old friend a part of my life again.  It had slipped away to a place so far removed that it grew comfortable to ignore.  I'm trying this time around to still play with purpose as I did before, but also for my own enjoyment and the enjoyment of those around me.  I'm playing now for the love of the art of making music, and even for that dreamy teenager who thought she would become professional one day.  I play this time in hopes that the next time my violin needs repairing it is because of too much attention it has been receiving, rather than neglect.