P/T Conference (Soul Crushing) Day today!

Ben's P/T Conf is today and I'm nervous. My stomach is a mess from nerves. I tried to have an egg this morning thinking some protein would help and it's just sitting in my stomach like a stone.

The thing is that every time we do something like this it's always hard for us... or maybe for me, I guess I can't speak for Ed. This is our first PT conf. for Ben because last year when he started school it was after Conf. time. It just seems that every time we do something LIKE this... like when we had Ben evaluated for Excel, it's kind of like getting the wind knocked out of you. I am struggling for words here because I don't know exactly how to explain it all.

It's like... like... every time we do this we hear something we don't WANT to hear. It's not that we DON'T want to hear it though... it's that we didn't see it coming. We kind of go along with Ben day by day and he's just Ben and he is how he is and that's how life goes with Ben and that's NORMAL for us. We see the strides he's making, like he's putting two words together with great frequency now and is even putting three words together occasionally (rarely still, but at least once or twice a week). Then yesterday my brother called and Ben ran over to the me screaming "Hi!! Hi!! Hi!!" which is Ben for "I want to talk to Nana!" LOL!! Well I gave him the phone and told him "It's your Uncle Mike. Say 'Hi Mike.'" I fully expected him to say "Mike" (well, "ike") because typically that's what he does. He repeats the last word you said (with syllable deletion frequently) and that's it. So Ben takes the phone and puts it to his ear and says "Hi Ike!!!" all excited. I was SO thrilled. I mean just ridiculously happy. Ben talked to Mike for a minute or so and then I took the phone back and squealed to my brother "Did you HEAR that!!!!??? Did you hear him say "Hi Mike"?" He was very... oh I don't know... unimpressed maybe. Admittedly but that's because he doesn't live with Ben and get what a big deal that is (and I know that my bro loves Ben, it's just he doesn't GET it and that's okay). So the thing is that we see this and we are honestly just TICKLED pink by it - all of it. We're so proud of him and we see that he's really working hard to do this and trying his hardest and really it's WORK for him. It's hard for him but he WANTS it and he's trying.

So that's the thing, is that we see these things and we celebrate them and find joy in them and take the little sprinklings of happiness and hope that come with these precious little tid-bits. Then we go to one of THESE meetings. We've had meetings like this all of Ben's young life -- here and there... Dr.'s and therapists (PT, OT, ST) and developmental specialists and all that. It never seems to fail that somehow I leave feeling that some of that joy and excitement at Ben's little milestones is taken away..... because they tell us what Ben SHOULD be doing... where he SHOULD be developmentally... how he SHOULD be. That's when it all comes raining down on my head that Ben isn't where he should be in so many area's and that most likely he never will be. It's a little bit soul crushing every time.

The thing is that then in a few days I'm back into the routine of life as we know it and back to our "family normal" and it all kind of melts away and we are with OUR Ben. The Ben that gives us little moments of complete joy. The Ben that we all as a family treasure every little step he takes forward as a celebration and a moment in time of complete happiness. So our "normal" always takes hold again as I remind myself, repeatedly, for a few days that Ben hasn't changed, all that's changed is me and what I heard and how it hurts my heart a little bit.

So today is the hard part. Today is the scary part. The downward spiral that will most likely follow is on me... not on Ben. God, that kid is so amazing and so incredible and has enriched my world and my life experience in ways I can't even begin to describe. He is PURE love in a way that typical children just aren't. He makes us appreciate life and it's miracles in a way I never thought possible. EVERYTHING is a miracle and he has shown me that. Just watching Kit do something so typical and average for her age I now know to look and say "MY GOD!! Did you just see that???" It's different. Our lives, everyone here, are so different because of Ben. Yes, sometimes in hard ways but I don't know that I ever knew such pure joy before Ben came along as I do now. I love that little boy in a way I didn't know possible... and if you know me and know the way I love the other children you realize what a miracle that really is.

Today is just a scary emotional day for me. I've been crying at the drop of a hat the last two days and I know why, I'm preparing. I feel like at least this time I am preparing myself in advance for this, which I didn't really know to do in the past. So is that good? I don't know.

I'm scared today. My soul is going to fracture just a tiny bit today... and then in a few days it'll be better again. It hurts today but tomorrow we go on and in time we go back to our "family normal" and each day we love and laugh and cry and go on.

I probably won't update later today on how it actually went. I'll need some time to recalibrate. I'll update soon though.

New Tricks!

Well, Halloween came and went and I never did get to post again. I did post over at "The Six Pack" blog though so that will have to do. If you want to read about it and see pics... go there.

In other news Ben has started doing some new stuff that we're pretty excited about. This past weekend we discovered that if Ben holds onto something he can jump and get BOTH feet off the floor. This is brand new. Ben has always done this funny little "jumping thing" and he will stand and say "hop, hop, hop" and leave one foot firmly on the floor while he "jumps" with his other foot. It was the best he could do and he liked it and hey, he was TRYING! Well this weekend I saw him go over and grab a kitchen chair and actually jump with TWO feet. I was shocked and screamed for Ed to come see and we both watched in amazement and told Ben what a GREAT job he was doing :) Our Boo was so proud I thought that huge smile of his was going to split his cheeks. It's so awesome now with him because you can really SEE when he's proud of himself for accomplishing something and it's incredible... a total rush.

Ben is also really interested in dressing and undressing himself... BY HIMSELF, lately. Yesterday he managed to get off his long sleeve shirt all by himself, then he needed just a tiny bit of help with the pants, then he got his socks off and lately (and most frighteningly) he managed to get his own diaper off! WOW!! We were really impressed with that too. He also has a passion for putting on his own coat and zipping it up (the zipping he needs a little help with lining it up right first). His new mantra is "OWN!! Own! Own!!" which is Ben for "I want to do it on my own!" LOL! Seeing this new independence in him is remarkable because honestly he's always been such a very dependent and needy little guy that watching him WANT to do things on his own and try things on his own is an enormous step forward.

In verbal news Ben is using two word phrases fairly often now and once every few days we'll hear him put three words together (today he said "baba family room" ("baba amy oom") -- telling us he left his paci in the family room!). He's trying so hard and he's really coming along.

So it looks like our Boo is starting to venture out into the world of independence at this point. Baby steps, but that's how we all start isn't it?