Wednesday, September 2, 2015

Defying Gravity

Recently a friend posted the song 'Defying Gravity from Wicked. As I listened to it, the lyrics hit me in a whole new light, this song was Eli - his whole little soul has been trying to defy gravity.
Back at the end of July we had a bloody mess with Eli (and I don't mean it in the British sense). Since he's not verbal yet he has a way of getting things for himself. I had just picked up the older two from a church activity and while I was upstairs changing Pumpkins diaper I heard him begin crying and scream in a very angry manner. I rushed don to see him sitting in a pool of blood with an opened can of pineapple by his side that I had thought I had put back far enough to out of his reach. He had sliced deeply into the pad of the fourth finger of his right and the pain angered him even more so that he began flinging his hand back and forth, spraying blood on the cabinet doors in the process. He wouldn't let me put pressure on the wound and I kept wrestling him down to get a good look to see if that was the only cut he had which had me covered in blood.
Isaac came at that moment to see what was the ruckus and could only begin yelling, "there's blood EVERYWHERE!" Which in turn triggered Keila's anxiety and she began to scream and cry that Eli was dying. Amid all the chaos I managed to call Linda, a friend of mine in our congregation. She rushed over and I strapped Eli into his car seat still flinging his hand about and we rushed to the emergency room.

Walking in like a scene from a horror movie has the effect of quickly getting us admitted. The staff was quick to clean the trail of blood we left in our wake and once we were in a room Eli settled down and I could finally put pressure on his finger. He calmed with my singing but began screaming like a banshee when any staff entered the room

Once Kent got there, they drugged Eli so he would calm down enough to for the staff to look at the wound. The area was numbed and six stitches put in. We went home, happy to get back to eat a late lunch and soak our van in peroxide!
Eli struggles with some sensory issues. Typical senses can be over heightened to him and others are dulled where he will seek sensory input. Certain textures bother him, a toothbrush for example takes a lot for him to tolerate. What we hadn't realized was that the ends of the stitches felt very much like that in his mouth. His sense of touch is duller, hence the reasons for his pats feeling more like smacks. The numbing medication in his hand had yet to wear off. We sat him down to eat and we set to the task of cleaning. I glanced at him at some point and to my horror wondered why he looked like a vampire just done feasting. He had tugged at the stitches with his teeth and when he couldn't remove them he began biting his finger crushing it so hard his nail died and fell out days later.

The Lord was looking out for us because the very moment I discovered this our friend Jeff arrived. He took over feeding the other kids and we headed back to the hospital. The staff that attended us before had yet to leave their shift, the wound was cleaned yet again, stitches checked and then it was throughly wrapped.
What does this have to do with defying gravity? The following day he pushed a chair over so he could climb up and grab some pineapple with his good hand.
This is often his task as I cook dinner.

All he wants is to be just like everyone else. If everyone else can serve themselves, he can too. He's the child who pulls out the broom to 'sweep' when I tell everyone to clean up. If I tell everyone it's dinner time, he hauls a handful of utensils and dumps them proudly on the table. When I'm doing laundry, he rushes over to help move the load into the dryer or to pull the clean clothes into the laundry basket for folding. Sometimes such assertiveness has disasterous results, for example if everyone uses a potty he wants too as well.
It's really hard to get mad at him even though it's always a mess to clean. While he physically isn't able to control his muscles to be out of diapers he desperately wants to and until then, he insists on trying. He certainly has the will and most definitely will find a way, with or without me!

Little man practicing basketball. He could do this for an hour at least.

I've begun to better understand how he is frustrated at the world and even at me so very often. He's terribly cute, doll like with his glasses and upraised head tilt. It's easy to think of him as being so little and expect less. This is further enhanced by his inability to communicate clearly yet. Meanwhile the giant inside him aspires to more, his patience and obsessive pursuit of his goal will undoubtly bring him success. Perhaps because so many like him have had to struggle against so many odds is why we dare to dream for these children. While he may not pursue an acting careers, modeling or own his is own restaurant someday, what ever he becomes is what he will truly want for himself and why he will be so happy. He will have earned it and appreciate it more than most of us.
So I hope he will be forgiving of me when I just don't see his vision because I see my baby boy. I shall do my best to remember there is so much more inside than human eyes can see. Fly my little man, fly!

1 comment:

  1. What a beautiful description of your sweet boy. Interesting how many times I see myself reflected in the frustrations our disabled loved ones experience....we all have to work through our own limitations and try to defy gravity with whatever we've been given!