Fitting

A thin man with a ponytail sat down across from Little Man pulled off his leg and said, “now your mom is the weird one in this room.”  Little Man was impressed and turned to me and said, “shoe off!”

He refers to his prosthetic leg as “his shoe.”  To him it is completely normal to pull it off at church, in the store or when playing at home and lately he hasn’t wanted to wear it at all.  Now he has a new friend who also can pull his leg off on a whim.  But this new friend didn’t just help Little Man feel normal.  He helped in another way.

Little Man’s prosthetic leg and brace hasn’t been fitting well lately.  It is amazing that gaining a few pounds and growing even a quarter inch can throw everything off.  We are learning through every part of this process.  I knew nothing about how prosthetic limbs work not to mention the importance of socks, sockets and the fit of an AFO (honestly sill not sure what that acronym stands for, but we have one!)  I thought we were headed down the road to Shriner’s again and a month filled with multiple long road trips, juggling kids, babysitting and work schedules.  To say I was dreading the whole ordeal is putting it mildly.

But just when I feel at the end of my rope and wonder if I can handle what God has called us to – HE PROVIDES.

This time He provided us with a new friend only an hour from our house who understands prosthetics well, because he not only builds them, but wears one.  I so appreciated the folks at Rehab Engineering.  They spent several hours adjusting Little Man’s braces and leg as well as teaching me how.

Empowering.

Overwhelming.

Thursday for the first time I really felt like I have a disabled son and helping him overcome obstacles is going to be a life long job.  My head was swimming in medical terms and trying to wrap my brain around how to help my son.  You really might not believe me – but helping him on a day to day bases hasn’t been difficult.  All four of his limbs are affected by his syndrome, yet he is a very normal, bright, active, and healthy 2 year old.  To call him disabled has felt ridiculous.   But in this new world of doctors, therapists and prostheses it can feel overwhelming.

So I had to pause and take a deep breath.

Little Man has given me a daily reminder that overcoming obstacles is a normal part of life that when faced head on and taken a bit at a time aren’t that big of a deal.

He slid on a newly adjusted AFO.  We tested his limb and figured out we needed a different weight of socks and off he ran down the hallway chasing after a nurse with the promise of a sucker.  He didn’t take off his “shoe” all day.  Amazing how a little sock can make such a big difference.

Yup.  Some days it feels like no big deal.  On other days I want to hyperventilate over a sock.  But in the end I would choose this again….and if you were considering adopting a child with limb differences I would say “go for it!”  There is something about watching our Little Man running down the hallway.  He called my name wanting me to catch up.   It is a  job worth having.