Wednesday, August 27, 2014

Why I'm Not a Soccer Mom (Part 1)

From very early on, I knew something was wrong.  You know how when you hold a baby up, she puts her legs down and “stands”?  Henry never did that.  Not once.  He’d just ball up and look at me like I was a crazy person.  “I’m a baby.  You hold me.  That’s the deal.”  I brought it up to our doctor, but she wasn’t too concerned.  “Just watch it, we’ll see what happens.” 

What happened?  Nothing.  When he wasn’t crawling at 9 months, we thought we were lucky, we didn’t have to move our breakables!  When it stretched to 12, we started to get  worried.  At 16 months, we were given a referral to Witwer Children’s Therapy and started seeing Rosie weekly. 

Henry loved physical therapy. There were cars to play with, mats to lay on, and balls.  Oh, the balls.  Henry has always been very interested in sport:  he can sit and watch golf with his grandpa for hours, and to this day, if you try to talk to him while at a basketball game, he will put his hand up and shush you, “No.  Basketball time.”  So, the Witwer gym was practically Mecca to him: basketballs, baseballs, spiky balls, smooth balls, and the therapy balls.  Rosie became Rosie Big Balls, a title she fully embraced, and Henry became a PT Kid with regular appointments every other week.

Slowly but surely, progress was made, but walking was still something Henry just couldn’t do.  A new word was introduced in to our vocabulary:  clonus.  Clonus is an involuntary muscle reaction that is almost always a symptom of a neurological disorder, and Henry had it.  So, Rosie Big Balls referred us to the University of Iowa for developmental tests and an MRI. 

To have a kid in physical therapy is one thing; to have a child referred to the Center for Disabilities and Development and need an MRI is something else entirely.  I cannot say enough good things about the professionals at the University of Iowa.  They did everything they could to ease our minds and make the time that we spent there easy on us.  Unfortunately, there was no way to make the visits easy.  Simultaneously, the time we spent there broke our hearts and filled us with worry for what lies ahead for our little man, and made us realize how truly, beyond words, we are blessed.  His developmental testing showed a pretty substantial gross motor delay, but the MRI came back with no damage noted, which the best possible news we could get.  At the same time, though, that left us at square one.  To this day, we’re not sure what is causing Henry’s delay, though we’re leaning toward a very mild case of cerebral palsy.  Whatever the issue is, we do not believe that it is a degenerative condition, so Henry’s skill levels will never get worse than they are right now.  That is something to be very thankful for. 

On February 10, 2012, two days before Henry’s second birthday, ol’ Big Balls and I sat on the floor of the therapy room together and just looked at him.  “I’m at a loss,” she said to me, “We’ve tried everything. I think that at this point, we need to ramp up our interventions.  Henry’s not going to like it.  We’re going to have to push him like we haven’t pushed him before:  twice weekly appointments, time in the gait trainer, everything.  We need to get this kid up and walking.” 

I looked at him, my perfect little man, sitting there seeming to take everything in.  What else were we going to have to do?  “I’m willing to do anything,” I told her.  “Whatever we need to do to help him, let’s do it.”

That night, as if he knew he was being threatened with more work, my Henry took his first steps.  The next day at his birthday party, in front of everyone, he pushed himself up out of the rocking chair his grandma Barb had given him and stood on his own, and I cried. 

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