Tuesday, January 10, 2017

surgery update

Abby didn't appreciate the chaos of opening gifts this year.
She came into the room, picked up her favorite gift and walked out!
Fifteen, almost sixteen years into this disability thing and I'm discovering something new...
profound peace in the midst of the unknown. HE usually... eventually leads me there. Often it includes kicking and screaming after every attempt to figure it out on my own before I hand it over as "above my pay grade."
but this time I sat in the doctor's office to a new sensation...

Skipped the troubleshooting
jumped right through the tears
admitted I have no answers
laid open my hands with nothing to offer
felt the gravity of my child once again being more than I can handle
Was reminded HE loves her more than I could ever imagine
HE can care for her better than I can
I'm a simple, inadequate vessel
...totally unsure what that means or what it looks like today
Made the choice to trust while my body and emotions followed into rank behind my will

Every step of this journey beckons me to take a step closer to the one who has all the pieces of the puzzle and is fitting them together without any help from me. I have the option to join HIM in this work or continue to fight against what HE's doing.

When it's hard I want to get back to easy
When it's easy I want to cram as much into that space to maximize wholeness

So many demands I'm not entitled to

He never promised me answers, but HE did promise he'd walk or carry me in this path.
My "rights" as HIS are to be;
held
carried
belong 
peaceful
fruitful
gifted
joyful
hopeful

When I'm at the end of ME...
I give in and look to HE

Our visit with Abby's urologist marked one of the first times in my life that I actually appreciated name dropping. I'm not easily impressed, moved or in awe of people in general. I'm not the star struck kind of person, but this day I liked the fact that our new doctor appeared to be connected to the best in his field. He had an audience with some of the best of the best in pediatric urology and the consensus was...

Good news

The urethral diverticula might not affect her. It may not have caused UTIs and it may not cause them in the future. She may get them because she is incontinent and/or doesn't drink enough. There are a lot more questions without answers and uncertainties that beckon us to wait.

Bad news 

We really don't know what to do. There aren't doctors who do what Abby needs. I'm sure there are some who could, but it isn't a common thing or even an uncommon occurrence. It's really unheard of. They could come up with a plan and give it a go, but they're really not sure it wouldn't cause other problems in the attempt of performing such a surgery on such a little gal or if it would take care of the UTI problem.

Boston would really be the only place to go right now. If it becomes apparent this must be taken care of than we will need to go to Boston.

Good and Bad

Wait and see... I'm usually more of a bulldog kind of person. If there's a problem, let's solve it. This isn't that kind of thing. We could push it and go for surgery, but it makes more sense to make sure this is causing her problems before we go to such lengths to attempt a fix.

I don't like feeling like a ticking time bomb, but if I'm honest this is what life is all about. None of us are promised tomorrow. This is much like most of our lives...
Take a step closer and trust in WHO I know rather than WHAT I know

Big breath

We've had a lovely, quiet Christmas break. We stayed home as a family this year. It was different but nice. Abby has been great at home! She sat on my lap with MaryAlice next to me and the puppy for at least an hour as we watched a Christmas movie. This is a Christmas miracle! Abby never sits for extended periods of time unless she's in the mood for watching one of her shows or I'm singing her songs.

She's even started hugging everyone. She puts her hands on the recipients shoulders and leans in for a kiss and hug. We've been lifting her arms and saying "hug" for so I long I automatically cue her arms and almost didn't realize she would do it on her own...

Sweet blessings :)



1 comment:

  1. Such a beautiful picture of a beautiful Christmas. Thank you for sharing. I don't like sitting in the waiting and in the unknown either. I like maps and guidebooks and answers. ❤❤

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