the next step

That's my boy, grinning proudly, with his incredible PT.  I had no idea how deeply a physical therapist can impact the life of a kid, but Heidi has managed somehow to fill our son with hope and strength every time she works with him.  She has affirmed his dignity, laughed at his humor as well as his attempts to cheat, pushed him harder than he thought he could work, and motivated him to push on no matter what.  She has welcomed him, has valued his opinions, has been patient with his mother, and has taken him seriously.  What gift could beat that?!  For Heidi, this season, I am humbly and profoundly thankful.

Tonight, I am dragging out the inevitable call to sleep.  In four short hours, I will be awake, readying for FuXia's surgery today.  He is receiving an external fixator, a device designed to shape and stretch the bones in and around his knee.  It will, by many accounts, be inordinately painful.  He fears this pain.  I can only respect that, and though I may try to ease the anticipation with telling him about pain management and medicine and time, I would do him a remarkable injustice to minimize the pain he faces.  He will face it head on, will cry and protest at points, and he will overcome.  He has done so every step of this journey.

One year ago today, we climbed--that is, I was loaded in via stretcher and he was lifted into--a twin-prop plane piloted by two volunteers with Angel Flights.  They took us through the bumpy cold to Philadelphia, where we made our careful way to Shriners Hospital for the first time.  I only hoped to see an orthopedist whose work I'd found online after attempts to connect with the American doctor who saw FuXia in China failed.  When Dr. van Bosse suggested serial casting for FuXia, I assumed his goal was to straighten our son's feet to keep his contractures from worsening and causing him great pain.  It wasn't until several visits later that I learned his goal was for FuXia to walk.

One year ago, we made halting progress towards parenting FuXia.  With serial casting and procedures I would have preferred to put off for the sake of bonding with my sweet boy first, he has somehow learned to trust me, and lately, he will even lean into me or reach for my hand.  A mother dares to dream of finding her son's love when he joins the family after years of his own life.  A mother dares to hope he will feel loved and will cherish family.

I flinched today.  I insisted on visiting the hospital a day early to check in with the PTs here in Philly and to let them observe FuXia's recent gains.  I learned that this fixator thing is a lot more complex than I even imagined, and that I was not appropriately informed and educated.  I learned that we'll likely have to begin our Philly commute again, coming every week--every other week if we're lucky--for adjustments to this contraption which stretches painful wires all the way through my boys bones.  I was very thankful that he wasn't at my side to feel my fear, to sense--as he does with uncanny ability--that I was faltering.  I thought, "I can't DO this."

How gentle and kind it is that if I had to hit that wall, it would be the day before the anniversary of our first trip here, so I could remember how far we have come, how this was never supposed to happen, how no other orthopedist thought this possible.  FuXia used the wheelchair to go anywhere, except when he dragged himself or rolled across the floor.  He sat to brush his teeth.  He could not wear shoes.  He couldn't fasten his pants.  He needed help to get around at school. 

Now he walks.  He can lift his legs.  He can climb steps.  He can use crutches for brief stretches.  He can stand independently of support for 2 minutes.  He stands to brush his teeth.  He walks out the door, down the steps, and down the walk to climb into the car on his own every morning of school.  He can stand to prepare his own snack.  He can dress himself, stretch his AFO straps at night, walk all day at school.  He can use his walker to get into our back yard all by himself and still have the stamina to return to the house.  He can get the mail.  He can get up off the floor from his knees and stand into the walker.

Of course we can do this.  Look at what God's grace has brought us to already.  I am thankful for the galaxy that whirls within our lives, a symphony of faith and science and medicine and hope.  Heck--I'll bet we'll even bring ourselves to smile (somehow) along the way!  I will laugh at myself for taking me too seriously, I will smile gently at today's fear, and I will wake up in a few hours to walk with my sweet boy as he takes the next step.  And the next.