Handle with Care

Ari is at an age where he talks non-stop, his face animated in imitation of adults.  I often stop and focus on the moment, hoping to burn the conversation in my memory so one day I can tell him, "When you were little, you once told me...".

But this past week, he said something that I cannot get out of my mind, regardless of how hard I try.

He started with, "When I'm not fragile anymore, can I ..."

I don't remember what he wanted to do, but I do remember the feeling of my chest tightening and nausea in my gut.  "He's starting to get it." I thought to myself.

"Ari!  You're not fragile- why would you say that?" I responded.

"Mom, remember?!?" he replied, lifting up his shirt to show me the map of scars and buttons on his belly and back.  "Remember what Dr. Bleacher just fixed?  My secophagus?!? I have scars and buttons and go to doctors all the time and get needles?  How did you forget?!"  To punctuate the last part, he smacked him palm on his forehead in disbelief.

He was serious and gravely concerned that his own mother did not know about his current state.

"I didn't forget." I told him, pulling his shirt back down.  "I just don't look at you as fragile.  You can do anything you want to do."

"But Mom," he said, "I AM fragile.  BUT one day I'm gonna be big, big, big like Daddy," his arms reached way up high, "and I won't be fragile anymore and I'll ride the BIG Coasters at Disney World and bring MY kids on the coasters, too.  And when I'm not fragile, I'm gonna play sports like my friends and go to a big kid school like college.  I may even play football like Daddy.  But I'm fragile now, and I can't do that... but one day... Can I?"  He looked at me with hope and worry in his eyes.

"Yes, Baby... one day you can do all of that."  I answered, choking back tears and giving him a great big hug and kiss.  He wiped his mouth and patted his heart.  "There," he said, "I put it in my heart for later."

He happy-danced away and once he turned the corner, I sat down and sighed.

The truth is, I don't really know what he will be able to do or not do.  Will his trachea collapse in the middle of an important game or musical performance, momentarily taking his breath away?  Could his body handle sliding into first or twisting to swing a golf club?  What if he fell on his bottom, where the spine is bony and deformed?

I let the subject drop, but Ari brought it up again yesterday.  He was playing independently while I was making dinner and came across a valentine from a classmate.  He pretended to read it.

"Dear Ari.  I hope you feel better soon and I hope you're not fragile anymore one day."

I once again got the gut-tightening feeling, but this time opted to redirect.

"Want to be my helper?" I asked.

"Oh, oh, oh yes!" He answered and ran to get the step stool.

They were the best grilled cheese sandwiches ever.