Thursday, March 19, 2015

 I am helped

We know doctors.  I have not known parenting without doctors.  Gobs of them.  Pediatricians, therapists, and medical specialists of all kinds.  We have been incredibly blessed to have many knowledgable and caring doctors as part of our lives.  In simple ways and in life saving ways the influence of medical personnel has greatly impacted our family.

Sometimes there is a feeling of, "this is their job".  They do it well.  They do it with knowledge that is exemplary.  But it's just a job.  Because I was thrown into a world involving so many medical professionals when I became a mom 12 years ago I find myself taking a subconscious inventory upon an initial meeting.

Is it simply their job?  Is it their passion?  Are they calculating how many more patients they can get through their door in the next 5, 6, 7, 8 hours?  How do they view the life in front of them?  What are their perceptions of those they treat?  Are we a name?  A case?  A number? -  Mind you, this all happens in my brain within a matter of seconds.  It isn't necessarily a negative assessment,  simply a habitual analysis.

I'm always wary of switching doctors - cautious when meeting new ones.  Some of it is just the hoops to jump through and All The Things involved with getting into a new doctor.  Some of it is all of the explanations needed to get to a place where someone actually *knowns* K.  Who he is, what he needs, where he's at.  It's a process for sure, and can be intimidating at times.  It's so much more comfortable to just continue with the doctors who have been with him since birth.  They not only know him now, they were a part of the very miracle that his birth was and life is.  No explanation needed.  They knew the wonder and the fear and the crazy tight rope of those early months.  It feels comfortable and comforting to have them on our team.  They know. 

This month we closed a chapter on K's story.  We left the last doctor that has known him since birth.   Or he left us.  Or something. ;)  Actually, he left the hospital where he was practicing pediatric neurology,  which is really the only thing that could have convinced me to switch K's neuro care.  I had to. 

We spent months trying to get records switched,  talking to insurance providers,  and making phone calls to the office of the new neuro we were trying to get him into.  While these things are not my forte,  I can see where God has nurtured much patience in me through them. :)

Last Thursday I drove K to The U of M hospital to {finally} meet the pediatric neurologists who would be taking over his care.  He loves our "solo time" road tripping,  and hanging out,  even if it is to see doctors. ;)

I'm used to alot of waiting,  and was prepared for that.  It doesn't really bother me,  especially in the bigger hospitals.  It's just a thing.  We do what we need to.  But this time we got back about 3 minutes after appointment time.  Subconscious checklist takes note. 

K did his thing. From office staff, to the nurse who took his blood pressure and weight, to the team of doctors - he charmed them all. It's crazy to watch this process.

It goes something like this:

Check name tag, memorize name.

use name multiple times in endearing ways, ie -  "Jenn, what are you going to do? 
 Is it going to hurt me at all? 
 What are you going to do when you get home? 
 I really like music, Jenn.  Do you like Music?" 
 Pauses to give a big enveloping, clinging hug to Jenn.

And then, sometimes,  "Hey Jenn, do you happen to have any iTunes cards or anything like that?"

At which time the One Big Mistake,  that one well-meaning nurse once made,  surfaces once again.  An iTunes gift card was once given during a hospital stay for Mr. K.  Oops. 

Usually somewhere around this point the web of charm has been spun so magnificently that Jenn is doing everything in her power to get an Itunes card sent up to room 203...

And mama stands by and watches, torn between awe and embarrassment.  "Uh...yep, that's my kid."

We spent significant amounts of time with two specific pediatric neurologists last Thursday.  We will be meeting more of the team as time goes by.  Never once did they have their hand on the door while they engaged in a memorized spiel.  -Not that anyone would ever do that or anything, but they didn't. 

As amazed as I was at my own child's fast moving vice of charm, I was even more impressed by the quick and pointed questions the docs asked me and K to make a fair assessment of who he was.

Subconscious checklist marks down that they know their stuff. 

"You keep talking about the Little Einstein's.  Who are they?"

Grabs Ipad, tries to fire up an episode.

"No,  I don't want you to show them to me.  Who are they?"


"Ok.  Are they real"?


"Hmmm. Are they little or big?"


"Then why are they called *Little* Einstein's?"

"Little, I mean they are little... "

- And so on.

They quickly and methodically,  through a serious of conversational yet very specific questions,  assessed my boy.   They hear his extensive vocabulary and peak into his intelligence,  but also seem to grasp his misdirected reality,  emotional immaturity,  and social awkwardness.  And I think they nailed it. 

And I'm impressed.

To state that it "takes alot to impress me" sounds kind of prideful and perhaps as if I am holding myself to a knowledge of All Things Medical, that I simply do not posses. So hear my heart: I have been to many,  many doctors and have not often seen this quick and knowledgeable method being used while still feeling very heard and treated with the utmost of respect.

Even more significant than myself being treated respectfully by this group of doctors was the fact that K was spoken to,  handled,  and interacted with in a way that oozed respect.  They looked in his eyes when they spoke to him.  No big deal?  Think again. 

I can not tell you the amount of times that doctors have spoken as if he wasn't even there. They ask me things that he could easily answer. -There are definitely situations in which parental input is needed,  and I get that,  but there are times that is just not the case.  And I know the difference.  I would be so bold as to say,  so does he.  

While his hearing is impaired on one side,  he can actually hear very well.

While his vision will never be 20/20,  he sees in a way that impresses anyone who has examined him.

While he has processing delays,  and yes - his brain is damaged - he processes deeply and with an intelligence that still shocks this mama.

So,  when you talk to him like he's a person {gasp} - my Conscious Checklist will take note and my heart will thank you deeply. 

You guys, they spent an hour and a half with us! I have experienced appointments with my K that have taken that long, and longer, but they have almost always involved long wait times.

After thorough conversations and examinations of K, I was getting my stuff around and preparing to leave.  And that's when the primary neurologist pulled a chair up to my chair and looked me in the eye.

What, WHAT? I mean - All The Patients. And the hand on the door knob thing - when's that going to happen? I'm kind of fidgeting in my chair, because I'm not really sure what else needs attention.

He's a bit past middle age, maybe. A fatherly type. This isn't just his job. He's not just passing us through and crossing off our name/number. And he won me over.

I didn't realize the burden I walked in with until he pulled his chair up to mine,  moved a bit to level with me,  maintained eye contact, and said,  "You love him very much.  It's obvious.  He loves you too.  Goodness, you are his world!  But being his mom is hard. It's alot. You do alot."

I almost wept.  Because it is.  It's alot and it's hard and I need help.  And to have someone of his caliber acknowledge this was kind of like a rescue breath to my gasping soul. Thank you Jesus.

"What do you need? How can I help you? How can I come along side of you, as K's mom, and support you in the big thing that you are doing."

Deep cleaning breath.

Can you feel it?

Do you get what this was for me?

Honestly I was surprised at the depth of emotion.

Relief,  hope,  comfort,  affirmation.

I didn't even know. I didn't realize the heavy load of responsibility, and some of the helplessness that had crept in.

But I know I left feeling lighter. Feeling supported and  so much more ready to engage back into this parenting gig.

I didn't weep. I didn't throw myself into their arms.  I didn't say, "can we keep you forever and ever?!" - Like he was some kind of a cute little puppy or something.

I took a minute  - just to myself - to acknowledge the burden and the help being offered. I whispered a prayer of thanks, and I honestly opened my heart and expressed my needs.

We have some new team members now. We are continuing some conversations. We have some plans in place for different scenarios.

I feel helped. I needed help and struggle to ask, but He knows. He just always knows.

"The LORD is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him." 


Arlona said...

Wow! We need to talk". Love you!

Rachel said...

And that is the way you should be treated, and the way your precious boy should be treated. So awesome. We had a wonderful visit at U of M neurology with Nathan in which the doctor at the end of our visit thanked me for taking care of these precious children. That has stayed with me. We expect to spend more time with them when Olivia comes home and I am so grateful for compassionate care!

Andrea said...

So, so, happy that the change in doctors went well! And the support and affirmation, wow, so good. Thank you Jesus. :)