It's not OK

Couple of interesting things first. 

I mentioned that we were on the same floor, in the same room we've been in before, saw the same tech and Doc in the ER, etc. 

What I didn't mention is that THIS is the room we were in when we got Manny's original diagnosis last May.  So I find it ironic that we get his second diagnosis in the same room of the hospital. 

Now on to the happenings of the day.  The surgeon who did the muscle biopsy sent his Physician's Assistant up to check on the baby's leg.  Took off the bandage (in 1/2 second), saw that it is disolvable stitches and said that was it.  Seriously, even with small talk, he was in our room less than 2 minutes.  I was supposed to come over here today to have that looked at.  I would have been soooooo ticked.  Because we have only one vehicle right now and Dan needed it for business this morning, he was going to drop me off at 9:15.  My appointment was for 10:45.  By the time he could come back to get us, it would be 12 or so.  I am sooo thrilled that we didn't have to do that.

The great news is it looks good.  The good news is it's healing well.  The bad news is ... healing skin must itch because he is digging at it.  He made it bleed so we had to put another bandage on it.  (Stinker butt). 

Next, the respiratory therapist came in.  Manny likes her - we've had her at least a few times every time we've been at the hospital.  He loves doing the "shakey vest".  But she said the orders had been rewritten ... to include the cough assist (torture machine I talked about earlier).  And a new device "Metaneb".  She says we'll hate it as much as the other machine, if not more!  She was right.

It was all I could do not to cry. Tears DID pour down my cheek. 

Instead, I just prayed quietly.  Then I explained to Manny what we were going to do and why.  (I believe in telling the truth ALWAYS!)  Sadly, he just said, "K" to everything I said,

He didn't like it but he didn't hate it.  He seemed pretty OK with it overall the first time we did this.  (After that, he was scared to death ... you could see it in the expression on his face, his heart rate, etc.)

Then it was time for the cough assist.  And wouldn't you know it?  The silly machine wouldn't work.  She tried for over 20 minutes ... but it wasn't working.  She was confused.  I told her it was a 'sign'.  She left with it and said they'd find me another one.  (Maybe that one won't work too!)

Now how about a cute story?  Sunday evening as we were being admitted, the baby, tech and I were in the elevator going from floor 1-8.  He saw the numbers and actually said each one as they beeped for each floor.  Seriously!  1,2,3,4,5,6,7,8.  The tech was in shock.  I was impressed.  He's one smart cookie!

OK ... back to the news. (Disclaimer on this paragraph:  potty details.  Skip to next paragraph if you'd like to miss that.)   Remember he has c-diff (contagious) and it causes diarrhea.  They wanted a stool sample to confirm it.  Well, he finally went just now.  And it was very strange looking.  Several people came in to weigh in on the look of it! LOL  Bloody diarrhea.  From my own research, it can be the c-diff kicking back into high gear (now that he's back on an antibiotic ... which is most likely) or it could be a new symptom (less likely).  BUT he has been saying "owie" a LOT and pointing to his tummy.  So ... it's always possible.  (And that's before we started up on the antibiotic.) 

And for those of you wondering about his overall diagnosis (newly received via muscle biopsy just today) ... do you recall the word Laminin?  Ring any bells?  It did immediately to me.  A few years ago, an email was circulating about Laminin and it's shape.  If you google it, you'll see it clearly.  It looks like a Cross.  People find it interesting at at the core of some genetic building blocks, looks like God has left His fingerprints there too.  Cool, huh?  And yes, this is the same thing that Manny is in need of.  How ironic ... Manny needs the cross.  And it's at the heart of the proteins.  The same thing that Jacob is having troubles with.  Coincidence?  Probably. 

And it's now 11pm as I write this.  The new diagnosis has set it a bit.  The truth is ... I was hoping the result would be nothing fatal. 

That hope died today. 

Too big for God?  Of course not.
Up for the fight? You betcha.
Grieving at the news?  Duh.

See if this was the first time we'd been given any news/diagnosis/prognosis ... this is devastating.  It's a huge kick in the gut.  And then we'd grieve and then eventually pull ourselves back up and dust ourselves off. 

But we got WORSE news less than a year ago.  11 months ago to the day in fact.  And we did our crying and grieving then.  And then we got on with life.  Making every day count.

Today, I was just given news that (according to the Doctors) we'll likely get to keep him for 8 or so more years.  And there are parts of me who want to rejoice with that news.  Afterall, the original diagnosis had him dying before he turned 1. 

But truthfully, this isn't OK.  Not even a little bit.  This is not right.  Babies are not supposed to die.  And yes, I know they do and that there's a higher purpose and all that.  But that doesn't make it any less painful when it's YOUR child suffering. It's the wrong order of things.  Babies shouldn't suffer.  Babies should run and jump and climb and play and eat and live.  All things Manny can't do. 

I'm not sure we (as humans) are supposed to accept it.  Maybe there's so much suffering because we expect it to be so.  Maybe it's because we accept it and don't fight for life enough.  Maybe we need to have more righteous indignation.  And more faith. 

 And yes, Manny has a great life.  We adore him.  He is celebrated.  That won't change. 

And yes, my faith isn't shaken.  I know God is still in control and still powerful and still a mighty Healer.  I still have hope that God can heal Manny completely; continue to astound the doctors. 

But today ... I was told my baby had a terminal disease.  And it's not OK.