Yesterday, we went for a walk in Mendon Ponds Park. It's the largest park in our county (2500 acres!) and has lots of paths and trails to walk. Apparently, in 1969 it was named to the National Registry of Historical Landmarks "due to it's geologic history and presence of significant kames, eskers, and kettles". I don't think we saw any kames, eskers or kettles, but we did see lots of beautiful flowers, trees & wildlife. And we spent some great time together as a family.
(Nana picked a little bouquet for Joshua. He took them and then promptly threw them overboard to the ground. He is such a boy. :))
I'm always amazed when people tell me that I handle Joshua's disability so well. It floors me. Maybe I should've gone into acting! Obviously, I have a gift for it. But the truth is that some days are better than others. And those people must catch me on a good day. Because some days, on the good days, I look at Joshua and forget that he is delayed. I forget that most families don't have to work their schedule around four different therapists, four different specialists and a pediatrician. I forget that he has microcephaly which has deep and lasting repercussions. I forget all the stuff that is scary and fills me with sadness. The majority of my days are like that.
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. :)
Do you have a theme song? You don't?! Well let's find one for you. A theme song is the song that you would like to play in the background every time you walk through a door. It should be something catchy and something that announces that you have arrived! Wanna know what my theme song would be? The song that I would love to play when I walk into a room?
'Eye of the Tiger'.
Ohmygosh I love that song.
But on to why I'm really here. Joshua has chosen a theme song. You don't believe me? Seriously, he has. He approved it and everything. When I played it for him, he laughed. And when I played it for Ben, he agreed that this should be Joshua's theme song. Wanna know what it is? Just have a listen...
Yep. It's perfect for him. Because apparently our child doesn't need sleep. And doesn't think that we need it either. Despite our best efforts, he is still up 2...3...4 times a night. One morning this week, he thought that 3:30am was a perfectly acceptable time to get up and stay up. For the day. Allllll day. It was a good time. Even a nightly dose of Benadryl (his doctor & neurologist recommended it for a variety of reasons) doesn't keep this kid down. It's getting tiring. Literally. But, I have to believe that it will end at some point. I mean, it's not like there are 10 year olds who don't sleep through the night, are there? One year down, nine to go. Just gotta be strong enough to make it. *cue Jamie's theme song*
In other happenings, we're driving a rental car for the next who knows how long. It's a cute little Chevy Cobalt. It's not a bad drive, but it can't get out of it's own way when you step on the gas. It makes me miss my Subaru. Where is my Subaru you ask? Well, it's tired too. It worked really hard yesterday at protecting it's most precious cargo and now it's going for a rest. We were heading home from my mom's house when we were hit by a 23-year old running a red light. No one was hurt (other than his ego when I took him down a few pegs for hitting me with a baby in the car!) and he drove his car away from the scene, but my car had to be towed because the side airbag deployed, neither passenger side door could be opened and the front axel is bent up. Joshua was checked out by paramedics and was completely unharmed thanks to his carseat. I am stiff and sore today and have a little cut on my foot where I got it stuck on the pedal trying to brake, but otherwise unharmed as well.
We have some visitors this week! Auntie Gina and cousin Elise are here visiting, and Auntie Jodi and Tio Jay are here as well! It's a party every day!
Finally, here are some of Joshua's newest accomplishments! He loves to play peek a boo...with him being the peeker!
He has also been practicing his sitting and is starting to be able to catch himself when he starts to fall! He is consistently sitting for a few minutes completely independantly!! He's also been working on being on all fours. He's starting to try to push up onto hands & knees, and with a little help, he can do it. Once he's in place, you can actually let him go and he will stay up for a minute or two! It's all very exciting. :)
We were heading home from my mom's house when we were hit by a 23-year old running a red light. No one was hurt (other than his ego when I took him down a few pegs for hitting me with a baby in the car!) and he drove his car away from the scene, but my car had to be towed because the side airbag deployed, 
neither passenger side door could be opened and the front axel is bent up. 
Joshua was checked out by paramedics and was completely unharmed thanks to his carseat. I am stiff and sore today and have a little cut on my foot where I got it stuck on the pedal trying to brake, but otherwise unharmed as well. 
He is consistently sitting for a few minutes completely independantly!! 
He's also been working on being on all fours. He's starting to try to push up onto hands & knees, and with a little help, he can do it. 
Once he's in place, you can actually let him go and he will stay up for a minute or two! It's all very exciting. :) 