#174 He Takes Care of the Mess

Every Tuesday, my brother Jonathan comes over my house for dinner. This past Tuesday night, after we had eaten and watched a little TV, Jonathan said he wanted to go home. Usually, he will cling onto every possible moment to stay at my house, but tonight I could tell something was off.

As I stood up from the couch to get ready to leave, Jonathan leaned over on the couch and let out a cough that can only be defined as a violent mixture of phlegm, wheezing, and intense gut action.

We know this cough.

A few years ago, we were at the mall with Jonathan and Joel. Jonathan had been acting tired and cranky towards the end of our trip. As we walked out to leave the mall, Jonathan debuted this very same cough. The mall was closing, but the cough was so out of the ordinary for Jonathan that Joel instantly turned around to buy a water bottle.

The cough walked with us to the car. With my hands seconds away from opening his car door for him, Jonathan looked up at his reflection on the window and vomited all over the door.

It was all I could do not to jump for joy at the sight of Joel running across the parking lot with a bottle of water in his hand. Jonathan got a few sips, then the rest of the bottle was given to the attempt of getting the vomit off the car.

So as this eerily similar cough was coming out of Jonathan’s mouth Tuesday night, Hubby sat up and said, “He’s going to throw up”.

I was in denial, so I didn’t seize the moment quite as quickly as I should have and seconds later my rug was covered in vomit with a look and smell distinctly related to the 7-layer taco dip Jonathan had asked me to make for dinner. Hubby ran upstairs stating that “he almost just threw up too” and I thought he was leaving me to fight the battle alone.

Stupidly, I ran into the kitchen and grabbed the two bowls that our tortilla chips had been in from dinner. Jonathan threw up in one, and then in the other, and as this beautiful process was occurring I couldn’t figure out why I hadn’t just grabbed the trashcan that was two feet away from the bowls.

With no other option left, I ran the filled bowls back into the kitchen and exchanged them for the trashcan. Of which, you guessed it, he expelled two more rounds of 7-layer taco dip scented barf. It was around this time that Hubby came down with a bucket of soapy water to take care of clean up.

I'm sure you are wondering why I am sharing with you my Tuesday night from hell. You’ve had your own share of rounds with stomach bugs. And if you have children, I’m sure you’ve done more than any human should have to do of cleanup duty.

But I promise, I have a point.

When we were fairly convinced he wasn’t going to let anything else out, we got him together to go home. He was shivering yet warm, his face pale and confused, breaking my heart with each second that passed. As I was trying to comfort him, I told him he was going to go home and rest.  I grabbed my phone to tell my mom what happened so that she could give his job coach a heads up that Jonathan was sick and probably wouldn’t be able to go to work the next day.

When Jonathan heard that he immediately said, “I see Mr. Chris tomorrow.”

“No Jon, you’re sick, honey. You probably won’t go to work tomorrow. You need to rest. You just threw up a lot,”

“I all better. I see Mr. Chris tomorrow. I go Praise and Worship (at church).”

“I don’t think so, we’ll see how you feel,”

To which, during our drive home, we had the same exact discussion about four billion more times. He was convinced he was all better, despite having just thrown up five times (and about six more later that night at home). Regardless of what his body was going through he knew two things: he still wanted to go to work the next day, and he still wanted to go to church that night.

Especially this morning, after losing an hour sleep last night due to daylights savings time, after waking up half an hour late and having the teeny tiny desire to skip church, I find myself put in check by someone who most people often overlook.

How many of us look for excuses out of work? How many of us want to sleep in on Sunday, or play hooky on our other church responsibilities? How many of us choose laziness over productivity? How many of us choose selfish desires over helping others?

My hand is raised.

Yet here, someone that is often labeled as a burden to society, incapable of serving a purpose, amidst shivers and bending over the trashcan, wants nothing more than to work and go to church.

When I see Jonathan’s passion for life, it makes me ashamed of who I allow myself to be when I’m angry, not feeling well, or just in a bad mood. He makes me realize that I will forever be working on putting my priorities in an order that God would be pleased with because my humanity time and time again will always cause me to fail.

I say it often, but I’ll say it again, Jonathan is my hero. He may not be society’s definition of perfection, but the unprejudiced love within him, the sincere care and concern he offers, and the joyfulness with which he approaches all circumstances makes me aspire to let go of myself and become more like him.

#127 He is Aware

For once, I'm right on time.

World Down Syndrome Day is tomorrow, March 21st.

The first time I realized this was a date actually etched in calendars across the country, I blogged about it a little late.  You can find that post here.

The second time, not to find myself in the same situation as the year before, I blogged about it a week early.  You'll find that post here.

Rather than give a spiced up version of the point that Jonathan has changed my life in such a drastic and positive way, I've decided to take a more photojournalist approach to this post.

Hopefully these pictures will speak better than my finely laced words ever could.

Jonathan makes my world positively beautiful.

#92 He Isn't Afraid of Down Syndrome

All That Matters About People with Down Syndrome

Grab this button!

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.