He Can

Larry and I are still overwhelmed over the amount of prayers, encouragement, kind words, and donations that have been showered upon us over the past week.  "Thank you" does not seem like a strong enough sentiment...

After posting "Emotion Overload" (my last blog post), I was not prepared for the amount of social media "shares" it received...  I was especially shocked to see it on North Point Community Church's Facebook and Twitter feed.  Never... and I do mean NEVER... could I have foreseen the amount of blog hits and support we received this week. Thank YOU for reading about Ari's journey and allowing me to share my emotions, worries, and triumphs with you.

There's something that has been weighing on me over the past few months and I'd like to share it with you...

As a parent, we are conditioned to tell our children not to say "I can't".  We tell them that they can do anything if they try hard enough, or at the very least, know that they gave it (whatever their "it" is) their best effort.  I, too, tell this to my children about all sorts of things.  Lately though, I find myself telling Ari "YOU CAN'T".  Even typing those words makes my heart hurt for him.  Can you imagine the impact of these words on a child?

It started this summer when the neighborhood boys decided to play a daily game of dodgeball.  Ari wanted to play but knows that dodgeball is not a good idea for him for 2 reasons. First, he could get hit on his buttons which would be extremely painful, or worse, a button could get pulled out if the ball hit him at the right angle.  Second, as I mentioned in the last post, any time he gets hot, there is a high likelihood he will experience gastric dumping and he'll poop.

"I'm sorry Ari, I know you want to, but YOU CAN'T play dodgeball.  Why don't you watch and cheer on your friends instead?"

So Ari, being the happy child he is, nods his head knowingly and goes back to watch, albeit a little deflated.  Guess what happened? He got too hot running around cheering on his friends just like I suggested and pooped anyway, ending his play time and forcing him to make an awkward exit and run home.  He was angry with me... "You told me to cheer them on and look what happened!"  I understood his frustration and knew that he did not really think it was my fault.  I tried to comfort him and guided him to his bathroom so we could do his cecostomy flush because once it starts, there's no stopping until we completely clear out his intestines.  I had other things to do, but everything had to come to a halt so we could take the next hour to immediately deal with with Ari's medical needs.  As soon as we started his flush, his mood lifted and he told me, "It's ok mom, don't be sad, I didn't really want to play anymore."  He does this often when he senses sadness from me.  Of course he still wanted to play... he just cared more about making me happy than his own feelings.

Next came Boy Scouts... oh did he want to be a scout in the worse way.  Every day after school he came home and told us all about the amazing things you can do as a scout... Ziplining! Canoeing! Hiking! Camping! Meetings 2-3 times per week! He pleaded with us over dinner, clasping his hands together and shaking them for emphasis.

"I'm sorry Ari, I know how much you want to be a scout, but YOU CAN'T.  The zipline could catch your buttons, we don't want you in a lake because of the potential bacteria, and hiking and camping puts you at risk of being out in the woods and pooping, or worse, having a medical emergency.  It's not reasonable to put this responsibility on the scout leader.  YOU JUST CAN'T."

I'm sure you see the pattern by now, but it continues... YOU CAN'T play tackle football with the boys, YOU CAN'T go to Lake Lanier Islands with your friends, YOU CAN'T go out to dinner with your friends without an adult that understands your risk of choking and knows what to do.  YOU CAN'T  be dropped off at a classmate's house for a playdate just in case you poop/choke/catch your buttons playing with friends that don't know about your anatomy.  YOU JUST CAN'T.

This has been on my mind for a while.  I see how it affects him.  This week, Ari had an accident on Monday, so we did his flush.  We flushed him again on Tuesday, to guarantee he'd be good to go for Hip Hop class on Wednesday, but on Wednesday, he had an accident an hour before he was supposed to be in class.  I tried to be cheery and tell him about all of the fun things we'd be able to do together that night, but he read through it.  As I set up his flush, he told me "It's ok Mom, I'll catch up next week."  Again, he was trying to comfort me.  I guess my emotions were more transparent than I believed them to be.

On Friday afternoon, all of the neighborhood boys were at our house playing football in our side yard.  I peeked out the window and saw Ari sitting on the hill, by himself, watching.  I called him in and asked him if he felt left out.  He was so upbeat when he answered, "The guys are letting me be the coach- I'm part of the game!"  I was beaming with pride over his positive outlook.  There is so much I can learn about life through my son.  Not 20 minutes later he came in, looking for me with tears in his eyes.  I knew right away... "I pooped." He said, his chin quivering.  I hugged him, brought him upstairs and started to set up his flush.  "They let me be the coach, Mom." He told me again with both pride and sadness in his voice.  I was so upset for him and tried to hide it, but again, he knew.  "Don't worry Mom," he said after we got started.  I'll get to be the coach again.  I'm really good at it."  Of course he is... because "HE CAN," I thought to myself.

HE CAN do so many things... HE CAN be funny, and charming, and well-behaved, HE CAN play with his friends and never be embarrassed for the way his body is made, HE CAN dance and sing and live life to its fullest, HE CAN inspire so many people, many of whom have never met him.

You know what?  Larry and I CAN, too.  We can help Ari get to the point where all of these CAN'Ts turn into CANs.  We will research and continue to look for a solution to all of the obstacles in Ari's way.  We CAN get him the best care, from the best doctors, at the best places.  We CAN get him to a point where all of the limitations become history and he can begin to live without anything holding him back.

WE WILL...

Until then, I will learn from his optimism and not let small setbacks overshadow the big picture.  Maybe he's the coach not just in backyard football, but in living a life with gratitude and a smile.  That is something HE CAN do, and he does it well.

Emotion Overload

The past 2 days have been extremely emotional for us...

It all started in church on Sunday.  I mentioned in my last post that the current series is called "In The Meantime" and addresses what to do when there's nothing you can do.  This message is pertinent to everyone I know... whether it's a rocky marriage, a job loss, financial insecurity, a child with a learning disability, a sister battling cancer, a child with down syndrome... everybody's got their something.

Larry and I are definitely in our own state of "in the meantime".  Sunday's message was delivered by a man named Andy Jones.  Andy spoke to us about his own situation, which happened to be not one, but two children with autism.  He verbalized the self doubt that Larry and I have felt for so long...

"What did I do (or my spouse do) to cause this?"
"Will someone ever love my children the way they are?"
"Will they ever get married?"
"Can he ever play on a sports team?"
"Is this karma for something I did (or my spouse did) in the past, when we were too young to know better?"
"Why our child?"
"How are we going their handle this today, tomorrow and forever?"

The more Andy put these thoughts... these secrets that parents of special needs children think about but never discuss... into words, the more it sunk in.

I started to cry.  Not the "wipe a tear falling down your cheek" kind of cry, but the overwhelming, all-consuming type of cry that catches your breath and causes you to shudder.  I was mortified, but I couldn't stop.  So there I sat, in the second row, silently sobbing, with Larry to my left, fighting back his own tears, and my dear friend Kelly on my right.  Both attempted to comfort me, but it was no use.  I wanted Andy to stop talking, to stop saying these words, but he kept going.  The pain in my heart was excruciating and I had no where to go to escape.

Andy went on to discuss how he overcame these doubts, how he realized that autism was God's gift to him so he and his children could do big things with their actions, their message and their love.  I thought about Ari and the positive glow that surrounds him.  I have always felt like Ari's birth defects were given to him so his story, his fight, his perseverance and his joy in everyday life could be shared through us and through his very being.  Hearing Andy's message just confirmed my thoughts, though surfacing the buried doubts was difficult to handle.

As we went to pick up Ari from his small group after the service, I was still trying to catch my breath.  When I finally looked up in the crowded hallway, I made eye contact with my friend Stefanie.  For those you who have been with us since the beginning of our journey, you may remember Stefanie.  In addition to two healthy kids, her oldest daughter has Down Syndrome.  She was the first person I called as soon as I found out about Ari's birth defects.  She talked me off the ledge, she told me everything was going to work itself out, that I could handle the challenges of the unknown.  I am so grateful for Stefanie and her husband Jeff- both role models for us in our journey with Ari.  It was fate that we saw each other at this exact time.  She had been crying, too.  We immediately hugged each other tight.  She understood.  I understood.  That moment meant so much to me.

Of course, I went on to see about 20 people I knew after that and they all saw what a mess I was.  For those of you who saw me with a complete (and rare!) loss of composure... I'm sorry!

In case anyone is feeling their own "in the meantime" moment and wants to hear the message that was so impactful for me, you can watch it here: http://northpoint.org/messages/in-the-meantime/

The other thing that has Larry and I spinning is how quickly Ari's GoFundMe page went viral.  I didn't want to create it... at all.  For a year, multiple friends have asked me to create the page.  I had every reason why I wouldn't.  Larry and I didn't want to feel like "charity".  I was worried that  people would look at me and think "hmmm... I gave them money... Jodi has on new jeans... I wonder if she used my money for that?"  Ok... so I know deep down that this would (hopefully!) never happen, but just in case I wanted to protect myself from judgement.  My friends thought I was crazy.  I finally realize how selfish I was being... people wanted to help Ari, but I was trying to protect myself.

This past week, both my best friend from college (Julie!) and my friend Kelly launched their own individual campaigns to get me to create the page.  Kelly told me that one of the moms from ATA (Liv's cheer gym) had contacted her, wanting to help.  I was so touched by this gesture.  I finally gave in, with the condition that I would only send it to the two of them.  I was extremely honest on the page, as I always am in my writing.  It does not blatantly ask for money, like so many of these type of pages do.  Instead, I share Ari's story and the financial impact his medical care has on our family in real numbers.  I had to set a goal to publish the page, so I chose one that would cover past medical expenses we still owe and expenses for the upcoming year.  I thought it would only circulate amongst a few of my friends... HA!!! How wrong was I?!?  In 1 day... ONE DAY... the page has been shared on Facebook and Twitter over 200 times... all from 1 friend posting it 1 time.

We're humbled, overwhelmed, emotional, and in awe over the response.  Ari's reach is further than we thought.  His fight, his journey, his positive attitude, and his perseverance have touched so many people.

This is it... this is why Ari is here, why he is such a gift to us.  It all ties back to Sunday's message.  He has a story to tell... one that's uplifting, and positive and miraculous... and we'll be his voice until he's ready to share it on his own.

I had no intention of sharing the GoFundMe link on this blog, but at this point, many of you have seen it already.  So, here it is! http://www.gofundme.com/dr14f0

From the bottom of our hearts, THANK YOU... thank you for the prayers, the kind words, the encouragement, the love, and yes, the donations.  It still makes us a little uncomfortable, but I understand and am at peace with it now.

I also wanted to give a quick update and let you know that we WERE able to get insurance... at least for now.  What a relief!!

I can't do a post without a picture, so here you go... my big guy (messy hair and all!) showing off some muscles. Little does he know how strong he really is.