Every Day

We had our first meeting with the Muscular Dystrophy Clinic for Manny on Monday.  I have been so excited about this meeting for a very long time ... it's the offer of support, answers, services and people who "get it". 

We were greeted by a wonderful woman, Paula.  We've talked several times on the phone and she is amazing.  Manny, however, was crying his pitiful "scared cry".  You see, it's the same building where he has had MANY painful procedures happen to him.  He recognizes the parking lot and starts crying there!  I kept telling him "No owies" but he didn't believe me!

Random picture I like to call "Big and Little"

He was making quite the scene in the hallway.  I told everyone he'd sweeten right up. 

We got in a room and they started with the usual check up things like blood pressure and he calmed right down.  He started chatting it up with the nurses. 

Then Paula walked in and was so sweet to him and he had the most incredible conversation with her.  He was saying complete sentences about a sticker he'd just gotten.  "Diego kick the ball" and similar other sentences.  She asked the color of Diego's shirt and he said, "Yellow".  He named Letters and numbers. He impressed her with all sorts of other skills he had.  He said, "Bye Paula" when she walked out and she melted.  (He is not quite 25 months old.) 

I heard her talking in the hallway with the Doctor about how smart he is and how is he meeting many of the preK skills.  The doc walked in and said, "How old are you?"  And Manny would not even LOOK at the Doc! He refused to do anything or say anything the whole time he was in there.  Doc was not impressed! 

The Doc has been running the MD clinic for several decades.  There are MANY kids in their current clinic.  There are none with Merosin (Manny's diagnosis).  So he says he'll research it even more.  He could tell I was "up" on the diagnosis and even asked me if I knew of any treatment options I'd run across.  (No) 

We had some very frank discussions.  And most was just what I expected.  There was one thing that struck me though ... and it's taken me 24 hours to process what I've heard. 

I know it will be difficult to explain but basically it's in regards to prognosis.  No one knows.  I'm at peace with that.  I know Manny's life and the number of his days ... firmly in God's hands.  I know that one illness could take him out. 

With the previous diagnosis they didn't expect him to live until 1 or 1 1/2.  But from what I've read about Merosin, it's all about how much Laminin is missing.  Those who are missing some ... there are kids living until their late teens and early 20s.  With kids missing most, they typically live until about 8-10.  The kids with none ... they often don't live until age 2. 

Manny's muscle biopsy showed he had none. 

And in fact, he is soooo severe with his symptoms THAT is the reason the Doc didn't originally suspect Merosin when he saw him last year.  Kids with merosin rarely are tube fed.  They rarely have their stomach muscles quit on them.  They rarely show severe symptoms at birth. 

So all that said ... the doc says he is already living on borrowed time.  I think I knew that deep down, but ... it still takes the wind out of you in a way that you can't imagine unless you've lived it.  For the past 24 hours, it feels like I can't take a full breath. 

Now what changed? Nothing. 

But I did think we'd have at least a few years of not worrying about him and his lifespan.  But the truth is, I guess I needed to be made aware (again) that EVERY DAY is a gift.  EVERY DAY is a bonus.  EVERY DAY is to be celebrated. 

I don't live in fear or worry constantly (often, but not constantly).  And when I consider such things ... the thing that hits me in the face most is this:  How to help him live his best life?  What will bring God the most glory?

So today, I am made aware again of just how fragile and precious life is. 

EVERY DAY is a gift. 

What are YOU going to do with today?