Wednesday, December 22, 2010

It's Like This. Or not...

Do most of us have a vision or a dream of what our perfect lives should look like, but an inability to attain it? Is it idealistic or selfish to wish for a different you than the one you live with each and every day? I am struggling to live in the now...I suppose I have been stuck in that rut for some time. I have a vision and I just don't know how to get there. Let me rephrase that. I don't know if I'm supposed to get there. When you get married--and especially when you have children--you take on a new identity; a we, not just me, unit that must be considered as a whole. But the 'we' can't entirely work properly if the 'me's' inside of it aren't in tune, right?

Here's my vision (or at least an aerial view of it):

1. A happy, harmonious family unit. Yes, there will still be the normal bickering, but a little less of the tension we have looming over us now would be nice.

2. Music all around us: I always envisioned having a little pick up band that would come to my home once a week or so and play music and drink wine. M's often quite deeply plugged into music-especially when it is live--and I have always thought having a sort of hippie, extended, musical family would benefit him greatly. Last time that happened was on our front porch in Austin, 2007. That's over three years ago for those of you who have killed enough brain cells (like me) to not be able to do basic math :) In other words: too damned long ago. Oh, you should have seen M at that party! He stood an arm's length from the electric guitar player; mesmerized and calm. It was beautiful.

3. A home that we love and want to live in for the rest of our lives (or at least feel like we'd want to). We move around. A lot. Our last home (same one that had that magically musical front porch!) was pretty close to perfect. We had four, fully-fenced acres to safely play on with the most beautiful trees I have ever seen on a residential plot in Central Texas. The deer had babies in our yard each Spring, and from my office window I welcomed back the monogamous pair of woodpeckers as they returned year after year to the same oak tree to kick out the wintering house wrens and have their babies. We watched our creek ebb and flow with the rains, saved a snake once from some garden twine, and took tractor rides down the block to feed the neighborhood goats. I miss having that space!

4. More quiet moments to reflect and write. I have fleeting moments of profound thoughts running through my head. Those are few and far between these days, and other less appreciated moments zap them from my thoughts almost as soon as they've appeared. I know I have a voice to share. I know I have things to put to paper (or blog as it were) that could very well help me process this life and get one step closer to my own version of nirvana, but it's all happening so fiercely and so quickly that I have no time to let it simmer and soak.
Like now, for instance...I've gotten up no less than five times to attend to everyone else's needs. This is life as a parent, I realize. And M is now about four feet from me with his ipad blaring another Disney movie, so I've gotten up a sixth time to turn down the volume. The flow of thoughts that were in my head before I started this post have withered and I am left once again feeling like I didn't quite express what I wanted to, and I certainly have no idea how to conclude it.

I am not living the life I know I am capable of living. This much I know is true. And so the days keep coming and going, no more fulfilled than the last. And my children suffer for it. And I suffer for it. And I must figure out a way to find that music and make it a part of our daily lives.

Saturday, December 11, 2010

Have You Seen This?

Truly amazing and beautiful...

Wednesday, December 8, 2010

Is There A Doctor In The House?

I posted the following at Hopeful Parents. Be sure to stop by their site for the Pampered Chef giveaway!

M has pink eye. How we had managed to go for over seven years unscathed by this lovely bacteria, I am not sure. Actually, I think we might be fairly average in this regard, (I've never had it in my 37), but my pediatrician's shock over it made me wonder if it was that unusual to have not experienced such joy as of yet. His chuckle-y reaction got me thinking about how we are perceived by the doctors we visit who aren't traditionally the ones who see kids on the spectrum or with other special needs very often. Do they assume that with all the other craziness we seem to embody that our kids are likely to get every ailment under the sun compounded with their unfortunate tempting of the odds to have their chosen disability in the first place?

We live in a smallish town that requires one to drive over a small mountain (or a large hill--whichever optimistic/pessimistic approach you'd like to apply to this road that winds up and then down) if you want to go to any of the big box stores. And if you want to go to really good doctors...well, the word on the streets is that you should drive over the hill for that, too.

We do drive over the hill for most of our doctors, and even for a developmental pediatrician that also assists us with our biomedical intervention. However, I also wanted an in-network pediatrician nearby for those times when my kids are sick and none of us has the desire to sit in a car 30-minutes each way; not to mention a doctor who only charges us a standard co-pay rather than the full amount of a visit up front that we must then wait to get a meager reimbursement for...oh, the expenses we hopeful parents must endure!

This was the doctor we saw yesterday. He truly is a lovely man; a youngish doctor who is genuinely trying to set up an old-school, small town practice where he gets to know his patients a bit better than in the bigger towns. There are plenty of kids in our town with disabilities, but I get a strong sense he doesn't see many of them on a regular basis; and the ones he does see, I suspect are a bit easier going about doctor visits than poor M is. Whenever we go to see him (which is rarely, thank goodness) he sort of looks at me like 'how do you want me to go about doing this?' In fact, for the required school health check last year, he literally did say to me, 'What of these required items do you think I can check?' I suppose I always respect a person who is willing to admit when they don't know something, but I am so frazzled by the time we are five minutes into most appointments that I haven't even got an idea of why we are there or what my name is.

We got out relatively unscathed yesterday. I only had to wrestle M's very, very strong 62 pounds during an under-the-arm temperature scan and when the doctor was checking his ears and nose. But the times when we have had to do strep test swabs...fuggedaboutit. On those occasions I leave sweat-colored and exasperated; unnecessarily apologetic and embarrassed. I know that the doctor likely takes pity on me more than he does M. He practically said so yesterday with his comment that he felt bad for me because he knew this was going to get even more difficult as M gets bigger and stronger. It left me with a sort of unease because I am in a transitional phase with this hopeful parenting thing; a phase where I am trying my hardest to stop feeling sorry for myself and projecting that sorrow onto other people. I realize that until I can allow that transition to fully happen people-doctors included-are going to continue to put their focus on me and not necessarily as much on M.

As M's Mom and main caregiver and advocate, I have to continue to seek out the best doctors to treat and understand my son. But above and beyond that, I have to find doctors that care about him and want to get to know him. These are the gems we have to seek out to become members of our children's very important teams.

Saturday, December 4, 2010

Grab A Tissue

This is a little corny, but damn if it doesn't sum this journey up really well.  Sigh...

Thursday, December 2, 2010

Where's Waldo? I Mean, Deb

Man, I look at my site meter and see that people are still stopping by here to check in despite nearly a month of silence.  Thanks for a.) caring, b.) wondering what this wack job is up to now, and/or c.) being loyal readers of this chaos.

As my friend, J, said to me yesterday, 'I know you've had plenty to blog about this past month!'  Yes, indeed, I could certainly fill more pages with blah, blah, blah...general suckitude...blah, blah, blah; but as I've said before, I hate that there are long stretches where this blog becomes nothing more than a bitch fest.

I will say this:  not having in-home ABA therapy for the last seven weeks has been awful.  Really and truly awful.  M is unhappy.  I am unhappy.  Everyone is unhappy.  There are sleep issues with both boys that are compounding the unhappiness.  Negative behaviors have returned to M's world, (and then some), and my mental state just doesn't seem to be fully in check to deal with it.  I'm working on that part, but I sometimes feel like I'm walking around like a bleary-eyed drunk, which is ironic since I've actually been drinking a lot less the past couple of months.

When I was a child--starting around age six and lasting probably until I was 13--I had a recurring dream whenever I had a high fever.  In the dream, I was in a white room with no dimensions to it.  I was standing there alone and all of a sudden tires began being thrown at me.  At first the tires were quite small and thrown gently to me, (I had to catch each one), but they would gradually get larger and thrown at a faster pace.  Inevitably, when I got to the point where there was no way I was going to catch the tire, the dream would switch to a playground.  I was on one of those animals atop a large spring coil.  A boy was sitting on one next to me staring.  Never blinking.  He was going back and forth very fast and then got slower...and slower...and slower...and then I would wake up.  I know, I know.  Totally messed up, right?  Probably should have seen a therapist about that one way back when.  But the reason I bring this past dream up is because I'm feeling like I'm in that room with all those tires right now and I'm about to drop them...and then what?  What really happens when I can no longer catch all those damned tires?

I know that there are a lot of people in this world that have lives far more stressful than mine.  I know how fortunate I am in so many ways.  But when tires are being thrown at you from all directions, sometimes it's really hard to appreciate the goodness.  I suppose that's a New Year's resolution in the works.  Wouldn't it be nice if there were no need for resolutions?