Friday, October 07, 2011

Taking the Good With the Bad

Yesterday was a strange day.  Nothing crazy happened, but I felt like my emotions were being pulled from one extreme to the other.  When I picked up Clayton from physical therapy, I could tell his therapist had something on her mind as she followed us to the car.  As we began to talk, my tears started to form behind my sunglasses.  (And of course, Clayton started reacting in his always-tuned-in-to-mom's-every-emotion way).  Reesha has told me on more than one occasion that Clayton has them stumped.  "He's a hard case," she once said.  Uh-huh.  Exceptionally hard!  

She reported that lately his hamstrings are so extremely tight that Clayton is near tears during some of his exercises in P.T.  This means something.  Clayton's pain tolerance is such that he has always been able to hang tough with all of his P.T. exercises.  From a P.T. standpoint, they are doing everything they know to do to help Clayton's spasticity.  From a medical standpoint, doctors are offering no other viable options (read:  ones that we will agree to).  Any option we've been given up to this point would negatively affect his trunk, which even on good days, he has trouble controlling enough to sit up.  Meanwhile, his legs are getting harder to "straighten" (he can't actually straighten them out anymore), and he has a partial hip subluxation on his left side.  He hasn't made real progress in P.T. in a couple of years, which means The Powers That Be will want to cut it off if that happens for a couple of more years.  It is so scary to think that he has made as much progress as he is going to make . . .

I think one of the reasons I get so weepy is that once again, we are having to adjust our expectations.  And even though he is eight years old, for the past few years, we have found ourselves discussing more and more his deteriorating level of function.  Can you imagine hitting the height of your physical functionality at about 5 years old?  I can't even type how angry that makes me feel for my son!!!!  We used to talk about the few things he COULD do physically, and even on that short list, some of those things are already being marked off.  Breaks my heart!!!


I had a long drive to the doctor for Clayton's G.I. appointment to digest all of this information.  I cried my silent tears on Clayton's behalf while he sang and talked in the backseat, ignoring my sad mood.  (Thankfully!)  We went into the doctor's office with no real expectations--just there for a check up, when really she hasn't done much for Clayton in the last couple of years.  When we finally saw her, I knew she was going to cut the cord once and for all.  She declared that after eight long years, her work with Clayton was finally done!  So after beginning with a tiny and very sick preemie, sending him on the road of rapid weight gain, and then finally weight loss, she was instrumental in helping Clayton arrive at a healthy and very average weight for an eight year old boy.  Average numbers sound like A+'s when you are the parent of a severely disabled child!  

Our relationship with Dr. G.I. has been a close one--we used to see her quite often and our visits have always ended with hugs.  Such a milestone to have Clayton declared a "graduate," but I was sad to say goodbye to this lady who had guided my every move on feeding my tiny baby.  I was so overwhelmed with all of his feeding issues when she entered our lives.  She was a calm, reassuring and very authoritative voice--a voice I trusted from our first visit with her.  But she is right.  Her job is long done, and Clayton has more fun things to look forward to than G.I. checkups!  His "gut" is still sensitive and his bowel is still both weak and strong (depending on the day and his spasticity), but all of these are essentially non-issues these days--issues we have learned to work around in our day to day lives.  So after all of these years, his G.I. graduation is definitely a praise-worthy event!


So there it is.  The recurring theme of our lives.  Taking the good with the bad.  Continual blessings despite heartaches over a regular sense of loss.  Many of those blessings have come in the form of outright supernatural miracles performed on Clayton's behalf.  And guess what?  It will take another one of those miracles to help Clayton's legs.  A miracle straight from Heaven.  


Pop said...

I'd give him my legs if I could....

Amy said...

Oh boy! I truly get this. I am so with you on the PT thing. I recently had to deal with this realization with Emma in the same regard. She cannot even do things she could do two years ago due to the tightness in her legs. Some days she cannot straighten them either. She has some partial subluxation in her right hip too.

Hugs! We are in the same boat essentially.

Patti H said...

All I can say is Clayton has the best family ever!!