But then there are the days that creep up on me and hit me over the head with reality and fill me with grief. The days where I realize that my son is not "normal" according to our society's standards, and likely never will be, are the worst. I've had alot of those kinds of days lately.
He is trying to talk. Trying so, so hard. But I can't understand what he is saying. He looks at me and says something and then waits. Waits for me to understand. When I don't get it, he repeats it. He repeats it and stares me in the eye trying to get his point across. And I don't understand. This goes on and on until he just stops trying. And my heart breaks.
On Tuesday morning, we took him for a CT scan because I noticed some ridging on the top of his head. The results of the CT scan showed that there is some premature fusing of the sutures in his skull. That means that his skull will not be able to grow & stretch in that spot as his brain grows because of the ossification. Josh's pediatrician assured me that all the other sutures are open and they will grow & stretch to accomodate any growth. But it hurts that he had to say if there is any growth. And it kills me that Joshua's CT scan reports that his brain is small. It's not like I didn't know that, but I guess hearing it from a report is just hard. It's that kind of thing that is a slap in the face and reminds me of Joshua's prognosis.
The funny part about all of this is that never once have I wished Joshua to be any different than he is. I'm so unbelievably thankful for him, as he is, that I've never wanted him to be without any of those things that make him him. I have, however, wished that he would never have to experience the comments or the looks he'll have to endure. I've wished that he wouldn't have to experience the cruelty that he will encounter. But never that he be changed or different. I have had people tell me that they are praying that Joshua will be healed. That makes me incredibly angry. Angry to the point that I can't even speak. Why would they ask the God who created Joshua, as he is supposed to be, to change our little one?! Why would they request that God change my son? Is Joshua not perfect just as he is? I wonder if they have they ever prayed that God change the hair color or their eye color or another child. Have they petitioned God to make themselves taller or shorter? Have they ever spent time in prayer asking that God change the size of the feet or nose of their brother, sister, nephew or neice? And when I step back from it, I realize that they are trying to be kind. They are trying to help. And maybe they really believe that Joshua will be healed. I don't. I know that Joshua was born with congenital CMV and as a result has global developmental delays and cerebral palsy. I know that a viral infection caused his head and brain to be small. These things won't be changed. Can they be? Yes. God COULD completely heal Joshua. Just like God COULD make me grow six inches overnight. But He won't. And I would never expect Him to. Because this is who I am. And I accept that. And I accept Joshua as he is, as he was created, with all his wonderful qualities and all his faults. All his abilities and all his disabilities.
And without fail, when I've fallen about as deep as I can take into this black hole, something wonderful pulls me out. Joshua smiles at me (which happens often) and I stop worrying about the future.
Or therapy goes really, really, really well and I realize that he's getting closer and closer to crawling because he's working so hard on pushing up to hands & knees. 
Or I figure out what he's saying and it gets him all excited that I finally got it.
(Click HERE to hear Joshua talk!)
Or I hear a song that brings me to tears because it says how I feel.
(yeah, I know the video is filled with couples...but there's a few shots of a mama and her baby in there too. And if you're a mommy, you already know that most love songs apply to your baby too.)
"Cause everyone that sees you always wants to know you
And everyone that knows you always has a smile
You're the dream that I've been chasing
after years of waiting
for a chance to finally shine
Everyone calls you amazing
I just call you mine."
And that, my friends, is how I really feel. Most days are good, some days are terrible, some are a little of both. I'm turning the comments off on this post because sometimes it's not about getting feedback...it's just about getting something out of my own head. This is one of those times. Thanks for letting me get it out. You're great listeners. :)
