Wednesday, February 18, 2015

A Growing Season

This morning I sat curled up in a corner of the couch, sipping coffee, writing in my journal, thinking over the past few days, and realized I was mentally chastising myself for not posting an entry on the 15th.

So I missed posting a birthday blog for Stephen.  This year we actually celebrated Kerry's 17th birthday (which was on the 11th) on the 15th, while Stephen was enjoying a visit with Mamaw and Papa.  It just worked out that way, especially since we stopped having a specific party or celebration for Stephen. It continues to be a relief and a mercy for all involved that we made that decision.  No cake, no presents, no hubbub that bewilders a boy who doesn't understand.  It's absolutely the right thing to do.  Or not do.

So, as I tried to let up on the self-criticism, I realized that certainly I could post on the 18th.  I'm way too picky and hard on myself about things that I shouldn't be...

And I want to be more conscious of writing about the good things that happen on the mountaintops of our lives, not just slogging tearfully through those dark valleys.  So, in honor of Stephen's 15th birthday I want to share some things about a day we spent together.

A little background: Stephen has (unlike many severely autistic kids) been to the dentist quite a few times over his young life.  The very early visits, when he wouldn't sit in the dentist's chair or really open his mouth, when young dental students crawled around on the floor trying to get a glimpse ("Umm...I don't SEE anything of concern...") were challenging and ultimately didn't really accomplish too much.  We moved on to visits at different offices that were all about the struggle to get him to take Versed (once or twice even having it put down his throat via his nose) and onto the papoose board made for a child half his size so he could get a rudimentary cleaning, or else I practically laid on him while his teeth were cleaned as well as possible.  Exhausting but definitely more purposeful.

But then we found a dentist who truly understood our struggles and our desire to take care of Stephen's teeth, whose patience (and that of his staff) is endless and abundant.  

He suggested at our last (papoosed) visit that we schedule a sedation visit to Children's Hospital, during which Stephen could comfortably rest while a really thorough cleaning was done, x-rays could be made (a first) and possibly have sealants put on his molars as a preventative measure.  After much planning and paperwork and a quick check up with our pediatrician, we arrived at the hospital last Friday (the 13th...) and were quickly put into a room.  Stephen was calm and happy and began asking for Chick-Fil-A 23 seconds after we got into the room.

Typically I would do my best to leave him dressed, just as you see here, to avoid upsetting him.  But...he has been doing better lately with change.  I'm practically crossing my fingers as I type that for fear of jinxing it.  But the fact remains that he IS handling certain things more calmly: being told "no" to things he picks up at the store, etc.  So, I decided to be brave and, after he got settled with his iPad, I told him we were going to put on some other clothes to see the doctor.

And he let me...

He also let me wrap a blanket around him because the room was cold.

He took his Versed by mouth without fighting.

He let multiple people come in to the room without telling them to "go 'way."

He let multiple people put strange paper things around his arm, and he DID NOT FIGHT.  Or scream.  Or hit himself.  Or even cry.  The wearing of these bracelets is unprecedented.

He giggled.  He gave me kisses.  I crawled up on the bed and rubbed his back and hummed songs and smelled of his hair and gave him a million high-fives for being such a sweet boy.

And then they came to roll him down to the OR.  I walked beside him all the way, and he clung to my hand.  He was groggy, yes, but he wasn't sure about this...and then they took him through the doors to the OR and I watched him as long as the doors took to close.

I went back to his room and waited, trying to develop my powers of telepathy or teleportation, wondering if he struggled with the mask as they put him to sleep, or if he cried or said Mama.  It was a long hour, watching various kids and parents come and go on the one-day surgery floor. Finally, the dentist came and talked to me, and everything went perfectly: no struggling, no fighting, no crying...no need for sealants after going 15 years with minimal oral hygiene and NO cavities, they got x-rays and did a really good cleaning...the dentist was amazed at the lack of plaque and build-up.  It's all that water he drinks, in my opinion.

And then, I heard a bed being pushed up to the room where I sat, and I saw one sock foot hanging off the end of the bed, and it was a foot I recognized.  He was back, sleeping peacefully and well.  

After the nurses parked his bed and left, I spent at least another hour with my chin propped on the side rail, just looking at him - this boy who should be pestering us to get his permit, following his big brother around, maybe playing football and discovering girls but is instead trapped in the world of autism...and I felt peace. Again, to revisit something David reminded me of that I mentioned in my last blog: sometimes, it's just the way things are.  Fighting against what IS brings suffering.  Yes, there is pain.  There is sorrow and sadness and disappointment.  But there is undeniable joy in this child's existence and we treasure that.  

I am so proud of how he handled the sights, smells, strangeness, and discomfort of this day. He was victorious, and THAT is worth celebrating.

This last photo is my favorite. It somehow encapsulates the emotion I feel when I look at Stephen, and realize what an accomplishment it was for him to not only make it through a difficult day but to smile and laugh at the same time.  My heart is broken and then mended by these soft, small hands.  He endured discomfort and change with a grace that is beyond his ability to understand.  He is and will always be my baby.

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