Friday, March 26, 2010

Kaden is . . .

Absolutely perfect. The sweetest, strongest and most beautiful person I have ever known. And, lately, a whole barrel of laughs.

I find myself noting, once again, that it's been a long time since my last post. I could say we've been busy and it would even be true but that's probably not the real reason my blog entries have become so sparse. If I'm being honest (and why not be honest, right?), I've been avoiding the blog because things have been . . . well, hard. Things with Kaden are more, um, involved, than we initially suspected. What I mean by all that is, as doctors warned us all along, it now appears very likely that Kaden's cleft lip and palate were the result of a more global genetic/chromosomal anomaly.

To say that I've struggled with this would be an understatement. It's hard to admit because I so want to be strong at all times. It's tough-girl bravado. A defense mechanism. But when it comes to my child, my wonderful, beautiful, perfect boy . . . I am utterly defenseless. And sometimes scared and sad.

That's not to say that Kaden isn't doing well. He's happy and healthy and we're extremely proud of him. He brings endless joy to our lives.

Maybe the best way to explain things is to say that Kaden is "unique." That's the term his neurologist used and it's really the only one that truly fits. There seems to be agreement amongst his (many) doctors that Kaden has an underlying genetic/chromosomal issue that caused the clefting as well as a neuro-muscular condition that's driving his scoliosis, feeding issues and other delays. Kaden is twenty one months old and not yet walking unassisted or talking. He doesn't point to objects, waive "bye-bye" or clap. He is, however, very adaptive and uses his hands and feet in more sophisticated ways than his therapists expect given his delays. He's also very loving and expressive with all kinds of non-verbal communication. He has his own way of doing just about everything and, slowly but surely, he continues to make progress every day.

Kaden's scheduled to meet with a geneticist in a few weeks. It took 8 long months to get an appointment and we've been warned of the strong possibility that we may never get a formal diagnosis. Basically, there's still a lot that scientists and doctors don't know about these things. It could literally be something as simple as a genetic mutation that changes a protein or an enzyme in his brain. Unfortunately, science hasn't yet caught on to all such irregularities so it's really a crap shoot as to whether or not the genetic tests will yield any meaningful results.

I think the most frustrating and emotionally challenging part is all the uncertainty. There's nobody who can tell me what to expect or whether Kaden will have long term disabilities. It's still too early to know such things. On good days, that allows me to have unbridled optimism. On bad days, well, the opposite. But the good days really outnumber the bad days at this point so at least I feel like I'm winning that battle ;o)

So, there it is. That's what I haven't been writing for the past few months. It feels good to finally get it out.

Until next time, here are a few recent pics of my adorable little boy. Did I mention how happy and cuddly he is . . . ?

1 comment:

Melissa Bonfiglio said...

Kaden is perfect and you are a fantastic mom. I can't believe how big he's getting -- he's such a handsome guy. Really looking forward to seeing you next week!