Mystery Lane

Mystery Lane

Wednesday, April 22, 2015

Annoyed and Proud

I will obviously never forget the day we sat in the doctor’s office and got Jackson’s diagnosis.  In many ways it was all a blur, in others there was so much clarity.  One thing that always stuck out in my mind was when the doctor said Jackson may never walk.  He followed that with pointing out that fact that the balance part of Jackson’s brain looked really good so there may be a chance he would walk.  That little comment was one thing I held onto that day.  As time went on and Jackson showed no signs of wanting or trying to walk, I would always think in the back of my mind “well, maybe, someday, he might.”  There’s that expression “Be careful what you wish for.”  Yup, be careful.

Many months ago Jackson was sitting on the floor and all of the sudden stood up on his knees.  It was awesome!  But typical Jackson form, he didn’t do again for quite a while.  Then he did.  Before we knew it he was on his knees a lot.  Then came the day he took a couple of steps with his knees and promptly fell down.  Again, time passed.  A new day came and Jackson again started trying to walk on his knees.  We would try anything to get him to take a few steps.  Before we knew it the two steps had turned into 5, which turned into 10.  We would bribe him with food to make him walk to get it.  He would always want that food and would walk however many steps he needed to get to it.  Now our once stationary kid whose immediate world was just an arms length away, is now all over the house.  I couldn’t be prouder!  Nor more annoyed.

Now that he is mobile his favorite place is the kitchen.  He likes to swipe all the pictures off the fridge, pound on the pantry door, and glue himself to my leg when I cook.  Lately he tries to reach things and pull them off the counter top.  I can’t take my eyes off of him!  I finally went and bought a baby gate to keep him out of the kitchen while I cook.  Pots of boiling water, knives on the counter and opening the oven are not conducive to Jackson‘s safety.   He doesn’t like that baby gate and he makes sure we know about it!  Was I happy to spend the $30 for that baby gate?  You know it!  I never envisioned needing a baby gate to keep Jackson out of the kitchen.  Now we are discussing getting another one for the stairs.  He has been making his way over to the stairs more and more lately.  Luckily we have caught him in time before he plunges down them, but we need to do something and fast. 

For spring break this year I took Sylvia and Jackson to Seattle and Olympia for the week.  We stayed in a couple of different hotels where space was limited for Jackson to move.  But move he did.  Every morning after I got out of the shower, Jackson would walk from the bedroom area to the bathroom to hang out with me while I got ready.  It was adorable.  Sometimes he had to maneuver around suitcases and his wheelchair, but he got to me every time.  After a while he would get bored and move back to the bedroom area where his sister was.  To see him walking around the hotel room was quite the sight.

This weekend I was working around the house and suddenly realized Jackson was no longer in the living room.  I could hear him but wasn’t sure where he was.  I found him in my closet, just sitting in the middle of the floor of our walk-in closet.  Eventually he decided to lay down under Kevin’s clothes and disappeared into the fabric abyss.  All you could see were his feet sticking out from the clothes.  I wanted to cry.  He had left the living room on his own, found a new part of the house he never really saw, and was entertaining himself.  He is exploring and with exploring comes learning.  It was awesome! 

Sometimes I look at my little boy and I wonder what he is thinking.  What does he think of his life?  Is he happy?  Does he want something I don’t know about?  What does he want for dinner?  How was his day at school?  Because he is non-verbal there is so much I don’t understand about Jackson.  Unfortunately, I think this makes me underestimate him at times.  But watching him learn how to walk on his knees all by himself has shown me how much courage that kid has.  Courage to trust his body, a body that notoriously works against him.  Courage to go to new places that might seem kind of scary at first.  Courage to keep trying no matter how many times he loses his balance and falls.  While his newfound mobility has led to me being repeatedly annoyed, I also don’t think I have even been prouder of him.  Anais Nin said “Life shrinks or expands in proportion to one’s courage.”  Jackson’s life has surely expanded because of his courage.  The world is a bigger place to him.  Now that he is realizing that, maybe in a few years I will be writing a post about Jackson walking on his feet for the first time.  For Jackson, my mystery child, there are many unwritten chapters to come. 

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