Friday, October 25, 2013

A Tribute

So I started this new medication a few weeks ago and I actually really like it.  It is not marketed for nerve pain, but it kept popping up on forums and other people with pain similar to mine were saying they found some relief with it.  Since nothing else was helping, my doctors went ahead and were willing to give it a go with me.  It is by no means a magic pill, but it does give me a few extra hours in the day to work with and hey, I'll take it.  It has some possible nasty side effects, but mainly there are just some minor ones.  For example, I cannot taste carbonation any more.  This one took me a week to figure out and I was just about to accuse the grocery store of selling me all flat sodas before realizing that Jeff was merrily drinking cans from the same box without complaint.  The other weird side effect is that my hands, feet, or lips will just randomly go numb.  This of course causes me to touch whatever area goes numb and looks especially strange when I start touching my lips.  So I have two choices it seems- either look like a weirdo, or I can try and make it look sexy.  The problem is I've never been particularly good at looking sexy, so now I'm afraid I have only made matters worse.

But other then that, there has not been anything new as far as my health goes.  Every day we do our best to get through it.  Last week I noticed that it has been just over a year since I started blogging, and it has of course made me start thinking about all the changes that have happened in my life in the last year.  So. many. changes.  It is so hard to believe that just over a year ago I would wake up in the morning without any pain.  That I would take care of all the kids by myself.  That I did not take any medication, or go to any doctors appointments, or have any tests done.  I homeschooled.  I lifted weights.  I cooked, I cleaned (well, not really lol)- I did everything.  I did have Stevens-Johnson Syndrome, yes- but it's effect on my life was not as far reaching.  It was manageable; we learned to live quite well with it.  I only shut down every couple of months and I learned when my body needed to slow down.  It was a good life.

I saw a quote on Facebook this past week and I am sorry I cannot site the source.  It reads: "Always be on the lookout for the presence of wonder."  When I first read it, it caught my eye which was strange to me because normally these kinds of quotes don't do much for me.  There are people who can sit and look for hours at trees and flowers and birds.  They can sit and drink in the sights and sounds of nature and be inspired simply by looking around them.  I am not like that.  I see the apostles who shed their blood preaching the gospel of Christ.  I see the needs and the hurts of this world.  I see the work before me and the incredibly short amount time I have on this earth in which to do it.  That is what inspires me.

I see wonder in the hearts of men.  And I am forever on the lookout for that kind of wonder.

This past Monday I had a doctors appointment near Albany, so Jeff and I decided to swing by the old church we ministered at for five years to say hello to the pastor we worked with.  It was wonderful to see him, and as usual he and his team were hard at work.  They were doing construction work on the new transitional men's home they were getting ready to open that week.  I was introduced to one of the men who was working on it that was about to move in.  He smiled, looked me square in the eye, and gave me a firm handshake...this man who was a former drug addict.  This man who gave his life to Jesus, completed a 14 month program to get clean and is now on his way to getting trained up to see what God has in store for his life.

That is wonder.

Former crackhead- such was he.  Such was I.  Not really, I mean I have never so much as had a drink but you know what?  In my heart lives the very same vile things that live in the worst of them that are on the streets.  Such was I.  Such were you.  What a wonder it is to see hearts and lives change.  To make connections with one another that go deeper than the surface.  Yes- I am always on the lookout for the presence of wonder.

That is why the changes that have happened to me in my life have not crippled me...because in a way, I see them as wondrous.  Of course I look back and I mourn.  That is part of the natural process.  But mostly I see wonder.  Because the wonder was not in the cooking or the cleaning, or the exercising- the wonder was in the heart.  The wonder was in the love I gave my children.  The people I encountered around me.  And I have not lost any of that.

But the point I am making is this- life is meant to be LIVED.  Lived with passion, lived with wonder, lived for the things that really matter- lived for Jesus.  If you live for temporal things, you will be fine for a while, but what happens when your world falls apart?  My world fell apart...but I am still standing.  I found somewhere to plant my feet.  I have no regrets from my past, nor am I overcome with grief at what I have lost.  The only way you can truly keep moving forward is to let go of the past.  Some of you idolize the past to the point of letting it cripple your future.  You focus on the way things "used to be", or "the one that got away", or the "things you never got a chance to do"- all that does is set you up for a lifetime of disappointment because life NEVER happens the way you dream it up.

Live here.  Now.

Yes I grieve.  I grieve the things that once were and the things that will never be.  But I want to move forward.  I want to see and feel wonder.  Some days I do both.  I am not talking about a plastic smile or a fake it till you make it.  I am talking about something so real that you feel it in the depths of your soul.  There are days that I cry so hard that I know that no prayer I utter could ever come close to being more sincere than my tears.  There are times that my pain is so real that I know I am feeling and experiencing  life in a deeper shade of agony then ever before known to me.  And that is living.  Sure, it is the harder side of living, but you need one side to see the other.  The reason I know compassion is because I know suffering.  The reason I know joy is because I know sadness.  The reason I know wonder is because I know brokenness.  The reason I know Jesus is because I know sin.

What a year this has been indeed.  A year of pain.  Of sickness.  Of loss.  And yet I would describe it as a year of change.  Of love.  Of character.  Of life.  Of learning.  Of depth.  Of soul.  Of passion.  Of miracles.  Of joy unspeakable.

Things are not always what they seem.  Remember that.

Friday, October 18, 2013

My Big Fat Lebanese Family

So apparently I missed my one year anniversary of when I started writing this blog, which was last month.  Huh.  I guess I have just been caught up in surviving what life has been throwing at me that I did not stop to see how much has changed since I began.  I remember when I first went public with this blog I posted twice a week and had about 50 readers and was sooo excited- like, did fifty of you really care what I actually had to say??  Now there are nearly 800 of you who tune in every week and the number just keeps climbing.  When I first saw the numbers growing like that I was shocked.  I am just so incredibly humbled, as I am pretty sure I do not even know that many people, let alone have anything worthwhile to say to such a crowd.

And yet you read.  Thank you.  Thank you for letting me use my voice.

In the upcoming weeks I will give this past year it's due diligence, but for now I want to stretch out the feelings from this past weekend as long as they will last.

Because I did it.  I met Chris Niles.  I took a train and with the exception of a few delays (all on the train's part I might add), all went very well.  I spent two days camped out at the Niles' house just hanging out with them and relaxing.  Because of how limited I am physically, they were very considerate as to how we were going to spend our time.  In fact, I actually felt bad because- (and I kid you not)- we literally spent all of our time laying on couches.  I found it to be like heaven because we got to just talk and drift in and out of sleep and as pathetic as it sounds, it was the perfect level of activity for me.  Jennifer (Chris' wife) has a HUGE Lebanese family and from her own description they are much like the movie My Big Fat Greek Wedding.  Let me tell you, they are amazing.  All day people just kind of popped in and out (and this was with her only telling a couple of them so as not to overwhelm me!!)  I felt like I was with family.  They would come in and just snuggle up on a couch and we would talk like we have been related to each other all our lives.  They are truly an amazing group of people and I count myself blessed to say that I know them.

These past few months of getting close with Chris and Jen have changed my life.  They have become part of my every day and my thoughts are never far from them.  My heart is a vault and I keep it very well hidden- I have been that way all my life.  To word it properly I will pull an excerpt from an old post of mine: "I will socialize with complete strangers and will pretty much talk to my friends about any topic under the sun.  I don't shy away from personal conversations and have no problems airing out my flawed life for all of you to read.  But despite all that, there is a place in my heart that is immensely private.  It's where I go frequently to "be alone."  As honest and open as I am with others, this is a part of me that will never come out.  In it I hold things that are most dear to me...people, thoughts and feelings whose depth would be cheapened anywhere else but deep in my heart. I will let anyone into my life...But I can count the number of people on one hand who I have walked into my heart."  

When I met Chris it took me completely by surprise because I was not prepared for the place he would so quickly occupy in my life.  God walked him right into my heart.  In that place where nobody goes- in that private, deep place where in my entire life there will only ever be a precious few- there he is.

That's forever.  Chris and Jen will forever be a part of my life.  I will love them and pray for them and you can bet I am already tying to find a way to see them again!  As Jeff put it the moment I walked in the door, "Yes, I am aware that you will probably be making plans to go back there and visit sometime next year!"  And besides, I believe I have about 342 more cousins to meet so I'm thinking that of course I need to go back.  

My sincerest thanks to Chris and Jen for an amazing time and for your incredible generosity.  And thank you to everyone I met for making me feel so instantly loved and welcomed.  So nice to meet you Kathy, Jeff and Leighann, I was nervous I wasn't going to get to see you and I'm so glad I did!  And to you Lorraine, Raymond, Maria, Leah, and Amy- you who I have seen and heard so much about and had been dying to meet!! You were so loving, kind and so wonderful to me, I could not help but feel like we were family- I would love nothing more than to see you again.  (Raymond you still owe me a good debate!)  Carlo, I had been looking forward to meeting you, and I am so glad I did.  You are a wonderful person and it only took one night for me to see that.  Thank you for looking out for me...I cannot wait to see you again, hopefully soon.  Liz, you are so beautiful and bold- remember that the challenges and hardships that life brings are meant to bring us closer to Him.  These are the times where we find out that God is everything He promised He would be...if you have the courage to continue to pursue Him in an even deeper way.  Grandma taught you that. And a very special shout out to Braden Niles for your empathy, your kindness and for basically getting me anything I needed...and for the bracelets you made me!!  

And now for the fun stuff!!!  The following is my video interview with Chris Niles broken up into three brief videos and then after that is a barrage of pictures!  Chris answered a bunch of questions that I asked him about being paralyzed   Now bear with me on the interview- we had been up since 4am.  We had to get up very early to drive to the train station, so there we are sitting in the car in the dark...Chris is tired after getting up crazy early and driving over an hour and a half, and I am a mix of tired and overtired/wired.  He did perfect, but I got a little nutty and I could have asked more questions but I thought I was gonna miss my train even though it got delayed an hour I just didn't realize it.  MY POINT IS, we had been up since 4am, so cut us some slack, even though he doesn't need it but I do so give it to me!! ENJOY!!  

Interview Part 1- What were your hardest adjustments? What were your easiest adjustments? What was something you thought would be hard but turned out to be easy?  (FYI- no, paralyzed people do not drive british cars, I was filming on my computer and it makes everything look mirror image)

Interview Part 2- If I see a paralyzed person struggling should I go help them?  Are all places with a ramp really handicap accessible?  How did you and I meet?

Interview Part 3- What was it like stuck under the tree?  What was going through your mind? What did you think when you heard that first car pull into the driveway and you knew someone was finally coming?  (Chris was trapped all alone under the tree that paralyzed him for 4 hours before he was finally found)

Ok TECHNICALLY this isn't Jen's family but she assured me that had I met all of them at once it would have resembled this scene, so just pretend Ian's parents are me and everyone else is Jen's family this is what it would have looked like had we all met!!!

Ok, here are picture from my trip!!!  

This is me getting ready to leave for the train station

Saying goodbye to Jeffy poo

Terrified I was going to get on the wrong train and end up in Canada

On the right train!!

Chilling in Buffalo where I had a few hour layover 

My train got delayed so poor Chris was waiting at the station at 2:30am and by the time he drove me to the hotel it was after 5 in the morning.  

Finally made it to the hotel where Chris was dropping me off.  Despite the picture, he actually was very friendly lol

A few hours later at the Niles' house!!! There is Chris and his wife Jen who is barely 5 feet tall and looks like she is about 16 lol

Braden, the most awesome 11 year old on the planet

Jen curled up on the couch

Chris wrapped up in what appeared to be a shawl

Closer look at Chris and his shawl


Braden!! This boy spent the entire time I was there hanging out with us and asking me if I needed anything.  He was also working on making these great bracelets...he was quite determined! 

Here was one of the two he made me!!!!

This is what we did the whole weekend, it seriously was amazing!!

Jeff was looking at the pictures and he said he almost didn't recognize me with the weird hair and glasses- that's code for 'why do you look so ugly?' lol  I tried to explain to him that we were spending our time laying around relaxing and napping but whatever, haha

Just wanted ONE nice picture and I couldn't do it!

Braden and Jen

Chris driving

Me and Jen (apparently with me looking 'weird' again, lol)

Me and Brady selfie


The only time we left the house was to go out to eat.  This was my first time ever seeing middle eastern food and it was amazing!! Braden was teaching me what everything was, and I remember a lot of it and I took pic to show you!  These are called grape leaves and they are filled with something I just don't remember what :)

This is raw meat!

Chris is eating the same thing I got, which was chicken, salad and rice which sounds really plain but the taste was so incredible!

This was my plate you can get a good look- there are two different kinds of dipping sauces on the sides and they were both kinds of garlic.  They were soooo good, I loved it and since Jeff wasn't with me I didn't have to worry about the garlic and kissing factor, lol

Braden going at some kind of dessert.  It was very sweet and yummmmmmmy

Again, what kind of 11 year orders lamb???  Braden, thats who!! Brady got a mix of things- lamb, kibbee, grape leaves.  

Chris, me and Carlo.  Chris and Carlo are best friends, it was so great to meet him he is such a wonderful guy. The whole time I was there he checked up on me and made sure I was ok.

Rico suave

Chris wearing Braden's hat

Liz (Jen's cousin), Jen, and me

Braden making us waffles for breakfast!

This is Braden buttering my waffle for me- so sweet!

Here is the Niles family- Braden, Chris, Christopher, and Jen

Another me and Brady selfie

Chris on the floor attacking/hugging Braden

Jen and Chris chilling  (mind you, I am taking all these pictures from the chaise lounge I was laying in that was set up for me!)

Overhead shot of Chris.  Nice.

This is how Braden was making some of his bracelets.  Kid has talent.

Jen and her brother Raymond.  He claims he likes a good debate but I don't  know what happened- I'm an easy target and I got nothing.  Must have been being polite ;)

Hanging out

Cousins Maria and Leah with Chris and Jen

Chris frying on the stove.  We told him if he was gonna splatter oil to do it on his legs- at least it won't hurt.


Maria, Leah, and Chris

Jen and a rare Christopher sighting!  (hey I don't blame him- he is a 13 year old boy whose house was invaded all weekend by some strange lady camped out on the couch) 

Maria and Jen

Chris, Maria, Jen, and Brady

Leah and Braden held the bike up while Chris fixed the chain

Look here boys, you're never too old to love your momma

Chris standing up looking really tall

Braden and Chris

Hanging out outside

Braden brining Chris' chair out

Chris basking in the sunlight lol

I think Jen was trimming her hair, lol  Im telling you, they are literally the best people on the planet!

The Niles family!

Another selfie with Braden!

Cousin Loraine and Chris

After she realized I was taking pictures lol

Me and Loraine

What happens to Chris when he falls asleep after teaching me how to use a new app on my phone

Chris with his sister Leighann and his mother Kathy

Amy and me- Amy is the one you always see with Chris at all his races- she trains with him and goes to races with him. Wish I would have had longer- love you Amy!! 

Amy (I took a cute picture of Tricia and Chris but it came out all blurry, I was so disappointed!!  And next time Jeff will not be so lucky as to escape ending up in one of my pictures!)

Me and Jen representing team Niles- i was dying for one of these shirts!!!

Chris took off his shirt when we came inside- who knew wheeling around was such a good workout???? hahahaha

21st century train tracks right Chris?

At the train station trying to hold it together.  So much love in so little time- and then I had to leave it.

Thank you for enjoying my trip with me, I will see you next Friday.

**UPDATE: As I was putting the final touches on this post, Mike (the man I met and talked with on the train ride) got in touch with me via this blog and e-mail.  I am thrilled to say the least- I think it is a wonderful thing in life when we are able to make meaningful connections with one another.  For that, you get another shout out Mike! ;)