Jan 8, 2011

It's not lost on me

I'm a realist.  
With optimistic tendencies.
And sometimes those worlds collide.

So while some of you read my blog and think, "I could never do that".  And some of you wonder how the heck we're surviving.  And some ponder how I have enough patience.  Some consider what you would do in my position.

I also know some wonder if I'm actually out of touch with reality.  I know *I* would wonder that if I read my blog.  You see, I only put certain things in here and not other things.  Like I choose to focus on the positive (for the most part).  I choose to be the optimist in the way I present information.

But just so you know I'm actually quite sane ... Here are some things that are not lost on me.

Yesterday, I got a wheelchair for my 18 month old son.  And while I think he's pretty darned cute in it.  I'm thrilled that he's happy to sit in it.  I'm overjoyed that he has better support for our long walks and long doctor visits.

It's also not lost on me that my baby just got a wheelchair.  And just to type that sentence makes me burst into tears.  They flow down my face as I type.  My baby can't walk.  He may never walk.  And I grieve.  I hurt for him.  And yes I keep hoping, keep praying, keep the faith up that he will.  The truth is ... he can't right now.  I see other little boys near his age running, jumping, climbing, riding trikes and he has to sit in his stupid wheelchair and watch.  And the saddest part to me is that he doesn't even know how much he's missing out on.  I know that's also merciful, but it's sad.  We take the other kids to the park and they go down the slide.  Him?  He cheers for them.

Yesterday we also got the MRI back.  And the blog I wrote about it was pointing out the faith and the hope that we have.  I pointed out that God isn't done with Manny's healing and so forth.  But it's not lost on me that right now, the doctors are all saying he has a terminal, end stage disease that could take him out at any minute.  In fact, they're shocked he's still alive and still progressing.  That's a testament to God's love and favor.  But for now, there is still a death sentence pronounced over this little boy.  And that is never far from my mind.

Yesterday, we also had a home health nurse come by.  Her main goal is to see if he is comfortable, getting all he needs, monitor his overall health, pain management, etc.  She is from hospice.  It is NOT lost on me what that means.  You don't get hospice unless they think you're terminal and end stage.  So while this nurse and I have nice little chats about all Manny can do this week he couldn't do last week, it's not lost on me of who she is.  That they still think we need her there.

It's not lost on me that if God doesn't intervene DAILY to keep him alive and thriving, the Story of Manny is short.  And I'm selfish.  I want him here with ME!  I want to be the one to receive his daily, "Hi there" and the special way he pats me and says "Mama".

So realize ... when I type those things of faith and happiness and "look at all the cool things" ... just under the surface, this is all here too.  I just don't talk about it.   But it's not lost on me.


  1. I am balling my eyes out :( Its not lost on me either. I SOO understood every word you wrote! I just want to tell you that Manny talking and doing as wel as he is gives me such hope for Jeremiah! The part of this that got me the most was where you said..." But for now, there is still a death sentence pronounced over this little boy. And that is never far from my mind. "
    FEW people on the planet know what that feels like to me, YOU my friend sadly do know and I could have said that eact statement. I am so praying for the day we can meet. There is a bond I feel with you, though our sons do not have the exact same things goin on , they have the same prognosis and God brought us together for a purpose. I know that involves meeting!

  2. Beth God choose you to be Manny's Momma. God Bless you all and Little Manny. He is precious to all of us following your blog and precious to the Lord to have blessed Manny with a Mama with faith like yours. Keep clinging to God.