SuperBen

This is Brand-New Ben.  Perfect as could be.  Big as an ox, just like his brother.  I'm like a convection oven - I can take a big bird and cook it fast.  It was love at first sight all over again. The only difference in me was my attitude that this was just all gonna be a piece of cake.  My master plan was to fold Ben into our family like we were a recipe. He could just come along for the ride, and all would be just fine.  I'd seen it all before, and I'm a roll with the punches kind of girl.  Truly, I am, but please...stop punching for a while.  I know and believe that if you want to make God laugh, then you should make some plans. Sometimes, though (just like everyone else), I would like to know why God thinks I am so funny.

I hate this next picture. It hurts me to look at it. I only wanted to show how far Ben has come, how truly misshapen his head had become by Halloween, when he was almost 5 months old, right before we got the helmet.

Enough of that.  Here we are, same night.  I honestly hate both of these pictures, because that is the fakest smile I have ever had on my face.  It is just a mask for all the worry and fear. I was trying to silently will him to hold his head up, hold his trunk straight, smile at someone, just act like a five month old baby.

This one reminds me that no matter what challenges Ben has faced/may continue to face, we love him, and that really is the one thing that matters above all else.  I love tender father/son moments.

We don't have a ton of photos of Ben from his first year, to be honest.  Now, I know that is just bound to be the case for the second-born child, but I'm just going to admit something right now. The reason is selfish and complex. I just found it too difficult to document such a trying time in pictures. I feel like I want to plow through this time and just forget about it. Yeah, I know I'm going to regret it...already do.  

At this point, maybe about 10 months or so, this was about as much expression as we could get out of Ben, at least for a picture.  We could do slightly better off-camera. 

Here's sweet Ben and his apparently inconvenienced big brother, John. Wearing the helmet. It's a cute little thing. Well, actually, it's an orthotic miracle worker. I just love this picture.

And this one, too....

Here we are just a couple of weeks ago. Ben only has to wear his helmet at night now. He can sit and play for the longest time. I've been feeling so...happy/relieved/blessed/excited/grateful/normal/not stuck-in-time/elated about how he has been progressing. True, Ben is still significantly behind where he should be developmentally. I know that. But we got some answers (not THE answer, just some answers) and he has just been chugging along. Even though I sometimes have to pull myself together in order to be with friends or just people at the store who have babies around Ben's age or even younger and can crawl, stand, or walk, I hold onto the progress that he has made and continues to make.

Do you ever just feel as if you have been standing on a perfectly nice rug and then someone pulls it out from under you? And it breaks all of your teeth? This morning, after PT, I sent Ben's therapist, Jen, an email about something unrelated to his treatment, and she responded with a thanks. Oh, and...by the way............

I think that you should get Ben's MRI results and have the neurologist look at them, then meet with him for a follow up visit. Ben's making great progress, but he's still so significantly delayed and there has to be a reason.

And there it is...the giant black hole I had turned my back on not so long ago - there has to be a reason. I thought we were done with the neurologist. I thought we had come up with a reason - the slowly developing vision.  I might just have been sticking my head in the sand (I tend to do that), but I was frankly all in with that one...sounds good to me.  And I know that it still could be the reason and that Jen is extraordinarily thorough and that maybe nobody can even explain to me why any of this has happened to Ben. It's just that I was ready to put it all behind us and get going.  Planning things, I suppose. 

Please pray for my SuperBen (and the rest of us). We'll get to the bottom of this - hopefully, we've already been there.