Tuesday, May 22, 2012

Shift in Perspective

This morning, Maelynn toddled into the kitchen in her Minnie Mouse jammies, toting two toys.  They spoke to each other, via little girl ventriloquism, then they gave each other kisses.  Everything says hello and kisses and hugs in Mae's world.  Everything!  This morning when she woke up and I was attempting to wake, she took her bearbearbear (yes, that's the poor thing's name) and helped it give me a "bear hug", a game she started with her daddy.  It's all about love with that kid, and with her brothers, it's more about lining up cars and driving them all over.  She plays with the cars and trains, and her Richie pushes the stroller and plays babies with her (they just walked through the kitchen, Richie pushing the stroller and mommy carrying her purse, just like they've seen Eric and I).  But it's funny... although we're very "everyone plays with everything" they still show a distinct girl perspective and boy perspective, and it's pretty cool to watch.

Ryan tends to do more play by himself, obviously.  But he still has times when he shows a great deal of love for his siblings.  He's even begun to ask if they're okay if they start to cry over something, which is wonderful!  There are so many fabulous things about Ryan, and I could go on and on about how neat and smart he is, all the ins and outs of being Ryan, and that's just what I can see.  He plays a mean drum roll, remembers things like crazy, makes us laugh, has the best giggle you can imagine when he's tickled, and he's like an atomic clock and a GPS all rolled into one at times.  He and his brother and sister give us so much.  This parenting thing is a ride I am definitely more than glad I stood in line for.

However, it's heart-wrenching to watch him struggle.  Last night he wanted to go out to play.  We were finishing cleaning up after dinner, and needed to wait to go out.  He started hitting, screaming, and yelling, demanding "YARD!"  As we always do, we made him wait until he calmed to go outside.  He does not get what he wants for screaming.  Ever.  Or for hitting, or yelling.  He must calm down, ask nicely, and wait patiently.  This took about twenty minutes of off and on red-faced, chest-beating noise until he finally calmed, asked nicely, and we went outside.

Soon after we were outside, he wanted to get on a tricycle he's completely outgrown.  Same thing.  It was a fight again.  Completely out of control, with his puffy, soft little boy hands clenched into tight, flailing fists, screaming, all that clearly exhibiting a few things.  One, that he does not understand why in the world he can't have that, and two, that he cannot yet control his emotions or express his feelings in any way other than hitting, screaming, and generally freaking out.  After much fighting to stay calm myself, and a trip inside with daddy to calm down, he was back out but still a little behaviorally shaky.

It wasn't his best evening, but not unusual at all.  What I can't seem to scrub out of my mind... what breaks my heart to pieces and leaves me feeling so inadequate and desperate... is the look in his eyes.  The fear, the confusion, the lack of understanding why this has changed.  He wasn't always too little.  But as I watched the plastic tricycle bow under his weight, his little knees hitting the handlebars as he pedaled, I knew he just couldn't keep riding it.  He has to accept this sometime.  Change and having to accept no are inevitable parts of life from which he simply cannot be sheltered.

We fight daily against our own expectations, frustrations, hurts, and even sometimes instincts to give Ryan the best chance at life he can possibly have.  We work to make sure he's safe, cared for, and getting all he can in the way of therapies, training for us, and we try to stay in communication with his educational system (for us, for now, it's the school district).  We keep up with the appointments, the meetings, the discussions.  We realize that Ryan's health and well-being isn't ultimately anyone's responsibility but ours.  That being said, we do not take that as a cross to bear, but as a gift!  It is our honor to care for each of our children, shepherding them as they learn to navigate this crazy world.  Special needs parenting is parenting intensified.  The problems are magnified.  The mazes are more twisty, the questions more obscure, and the answers too often are non-existent, or generalized to just doing our best and waiting.

So it's hard, but it's amazing.  All three of our kids grow and stretch us in ways we never dreamed.

There are so many days when I feel we fail Ryan.  I go to bed so often, as does Eric, wringing my hands with despair over how we just fail to reach him.  We fail to understand, to be able to better help him.  And self-pity is always creeping under the door, whispering that this is too hard, it's too much. The thoughts that start with "we should be able to..." begin to slither their way into my heart.  I picture other families bicycling down the road, all together, with mom and dad bringing up the rear.  All smiles, all happy, and everyone knows not to drive into traffic.  Everyone knows danger when they see it.  No one would rather stop and stim as his brother drives in circles around him.

And it starts to hurt.  The pain rolls down my cheeks and comes out in sobs, sighs, and a quivering lip.  Is it so wrong to just want my child to be able to protect himself?  To just want to be able to help him understand change, or to have him express his frustration in words?

This post started as something completely different.  Then I clicked HERE, and my heart turned.  Reading Katie's words warmed me as if God himself stood behind me, giving me a big hug, reminding me that it's all in His hands.   It happens, the self-pity, but there's always a new morning, a new day, a new minute, a new afternoon after nap time, when I can choose to eschew the self pity and clothe myself in the knowledge that we're not alone, and we can't do it all... but we know the One who makes that okay... even beautiful.

Thanks be to God.

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