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.
Wow reading the first few paragraphs really had me in tears! It seems so emotional! I really hope that you emerge as a much stronger and beautiful person from this
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