Sorry it's been so long!!!!

OMG, can I just start off this little blog by saying-- I completely squished my resolution to be a better blogger.  I just haven't had the energy to still down and think of what would be interesting for you all to know about, although there is quite a bit... I've procrastinated long enough, get some coffee, go to the bathroom, find a comfy seat..... this might take a while!

So, first off, Nate Update:

Nate is doing really great with his cochlear implant-- I still don't know what the outside piece of the device is called.  Everytime Craig and I are talking about it, the name of it is different everytime.  Sometimes it's "Where's Nate's cochlear thingy?", or maybe "Nate's implant thing needs batteries", I have said, "Have you seen Nate's ear?"  Whatever, we always know what we mean.  Anyway, he really seems to be noticing sound.  Again the difficult, frustrating part is that it comes off ALL the time.  We went in to the Midwest Ear Institute last Friday and they did some more programming.  There are 12 electrodes in his ear, they only have electrodes 1 thru 7 on, mainly because we're not sure if 8 thru 12 are doing anything for him.  His responses to sound are really hard to judge and we were certain that he was getting the first seven electrodes, but not so certain of the last 4.  So, it makes sense to turn those off until his responses are easier to read.  We have a gal named Terese helping us out at the Britain Center.  She comes in during his physical therapy with Mo and will work with him.  One day, we went into a small room (a storage closet actually), and kept all the sounds to a bare minimum then we would bang a drum or something just to gage his response.  We also sang to him.  At one point, Terese and I were singing "Twinkle, Twinkle" and he started almost yelling.  It was as if he was singing with us.  Or.... maybe he was yelling for us to QUIT singing.  Either way, we knew that he was responding to it!  Very exciting!

I haven't been to his baby class at the Britain Center (IDC) in a while, Craig's been taking him.  But he's really showing off for them!  If someone says, "Hi Nate" he'll kind of vocalize back (in a way).  The more that happens, the more I believe it isn't a coincidence.  Also, he gets this little half smile that used to only happen when he was having a siezure.  It's not that big baby smile that you imagine a baby having, but it's better than him there with his mouth hanging open and his tounge out.  He's cute either way, but you know what I mean.  Once a month or once every other month, there is a parent pow wow during class.  The PT's and OT's will come and hang out with the babies, while the parents and the director of the school will have a sit down and just talk.  Really, it's a chance to tell your story, or vent, or ask questions, maybe even a chance to just be with other parents that have a child with special needs.  I have never been able to go to one of these.  They seem to schedule them on Wednesday when Craig doesn't work, which then means I'm working.  Craig wishes that that wasn't so, he's always the only guy there.  Last time he went, we had both been struggling a little mentally with Nate.  In class, we are surrounded by other babies who have brain damage and some with down's syndrome.  Other than the baby (she's only a few months old), Nate is the LEAST functioning kid in class.  It's so hard to try to have fun when you're trying to find the best position for him to practice head control, hold his head so it's not flopping all over the place, keep his implant thingy on (or continue to keep putting it back on), help him participate (holding shakers for music class).... just all of it.  Then you're looking around at all these other kiddos who's moms are interacting with them, the children are clapping, waving, smiling, participating.  It's hard because I try to remember that Nate is doing AWESOME.... for Nate.  But when I look around at these other kids, it reminds me of the level of damage his brain has.  I try to think of the things he can do that the others can't, but the ONLY thing we can focus on is that HE can eat solids.  Some of the others can't do that.  So, we had both been feeling that discouragemnet within our hearts.  Then at this parent pow-wow, one of the newer moms (whose baby has Down's) mentioned how before she came to IDC she used to feel so bad for what was happening with her daughter.  She would compare her progress with other children and be discouraged.  Through tears, she said that now being here, she realizes she didn't have it so bad.  She felt so bad for us and some of the not higher functioning kids, because of what we had to, and are currently, going through. 

Wow.

I know all this came from a good place in her heart, but when Craig told me about this, all I could think was "Well, I'm glad we can make you feel better about your situation."  I'm so tired of that.

I'm tired of people not feeling like they can't express their worries, frustrations, problems with us because "it's not anything like what you guys have had to go through".  I guess it just depends on the day of how I react to those kinds of things.  I don't want people to feel sorry for us anymore, or tell us how strong we are.  I just want to be normal, or normal for us I guess.  You know, I used to be one of those people who looked at situations like ours with other people and be sad for them.  And think, "Gosh, that's awful, I'm glad we don't have to go through that".  It's really one of those count your blessings kind of things.  I guess what it really all comes down to is that the biggest problem in YOUR life is still (no matter what else is going on with other people) the biggest problem in your life.  Everyone's entitled to feel sorry for themselves for something not going the way you hoped.  It's OK to be frustrated at your own problems and tribulations.  And after you're done with your pity party, you  can look around and realize things could be worse.

I've done it.

I did it at the hospital when Nate was in the PICU and hearing stories of other kids dying or having chronic health issues.  At least Nate was getting better health wise.  We knew that if he pulled through, we would have no "health" issues.  Mainly what we would deal with would be his brain injury.

I did it when I was poking around on the internet for other stories or parent of kids who had meningitis as an infant.  I wanted to find a story just like ours, and see how it turned out.  I ran across some whose babies did not survive.  At least I could still hold, kiss, smell, experience my baby.

Everyone's situation is different and everyone reacts to loss or tribulations differently.  I can only express how I deal with loss or tribulations.  My way isn't the way everyone would deal. 

Moral of this story is that, yes-- I feel sorry for myself sometimes, then through the wheel of the world I realize that I should actually be feeling lucky for myself.  But, EVERYONE has problems.  Some are trivial, sure... but they are still problems.  I'm sure anyone could find another person whose been through worse than they.  That's when you can feel better about yourself.  I think that's one of God's great gifts to us.  The Wheel of the World.

Ok, so that's that.....

What else do I have to say here?

We have some stuff to announce regarding our TND fundraiser in Sept.  I will figure out some details and will post on that VERY soon, I promise!

OH!!!!  I almost forgot!  Nate can occasionally lift his head up when he's on his belly!  If his arms and elbows are under his chest he will lift his head and turn it.... I had Emi take pictures, here's some:

And here's some just for fun...

So, I leave you now... after much rambling and aims at thought provoking-ness.  I will try to be better about the updates people!  Thanks for being so supportive still!  You all rock!

Love,

Carolyn