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.
This is a great article. I think everyone should do whatever their heart says. Love reading this article. Thank you for sharing this with us.
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