Monday, March 24, 2008

Limbo

I think i am living on a plateau.
The world passes by my feet without so much as stopping to say hello. The weeks roll past easter rolls past, i go through the motions, but have no particular feelings one way or another about anything much. I find myself enjoying my alone time more and more and having less and less tolerence for pretty much anyone else. I treasure those moments in my car when i am alone and in complete control of everything. I have fantasys of speeding my way through the streets with the police chasing me, and i get something from the knowledge that i can just simply drive into a tree. I wont, but i can. Dont get me wrong, im not suicidel or anything, just looking for some aspect of my life that i can control.
Moments come and go and i make a mental not to add some of these to my auto biography which is destined to stay in my mind forever re surfacing only as fuzzy edged pictures of long lost memories in those few moments before my death.
I spent so much time hell bent on finding a diagnosis for my son that when it all reached its long awaited anti climax i just stopped caring. I have a new found pseudo-acceptence for all things Jaiden, i try to concentrate on the small accomplishments and pretend the rest of life just isnt really happening, i am immune or perhaps simply numb to it, the small but significant differences between him and the rest of the 4yr old population are convieniently ignored and tears are pushed deep back into my throat and i quickly change the subject.
I have become increasingly aware of my habit of befriending other mothers of kids with "problems" the worse the problem the better - i think this is some sort of slighlty disturbing self-medication, it makes my kid look good. I realised this after spending 20min with a regular customer at work one afternoon, having a deep and meaningful about our children which resulted in us both crying and some rather bizarre looks (but no questions) from my boss and some other patrons, and a $4 bird toy sale.
I look at Jai as he sleeps, his large lips hanging slightly open and his puffy cased eyelids tightly shut flickering around in the midst of REM. I wonder what he dreams, i wonder how he feels, what he thinks of his life.
He is probably dreaming of running into the arms of a complete stranger and giving them a quick warning hug about impending doom from the series of redback spiders that seem invade his mind daily. No. He is more of a glass is half full kid, and the sooner i accept its me with the problem, not him, the better for everyone.

8 comments:

Penny said...

Yep, in the same place. Your not alone

Heather said...

oooo Katie, I don't know what to say. For nine years we had no idea what could be 'wrong' with caleb. I had those ups and downs of acceptance, ignorance, and denial. I was finally feeling comfortable with accepting Caleb for who he was, and not bothering myself with a concrete diagnosis. I thought, in the end does it really matter? As long as we treat his issues, why do we need a name for them? I was seeing him in a new light, but always, always that nagging voice in the back of my mind was telling me to keep my eyes out. I was constantly searching faces and commonalities. Searching and searching. Then when I was tired of searching the answer fell in my lap. I seriously still think you should have further testing done for Jai. A different Geneticist maybe? Has Dr. Morris gotten back to you? It is very frustrating. I know. I want you to know that I truly know how you feel. It is a strange place to be ~ with all my love, Heather

Amy said...

There are certainly times when I can relate to your every word. I cannot however relate to the not knowing. But I can say this, I do know for certain is that Avery has WS and I love her. Everything else is still unpredictable, regardless of the DX. xoxo
Amy

Noel said...

I too have felt the same way on too many occasions to mention. I hope that your slump comes and goes as mine often does. No matter what Jai is Jai and you love him. Abi is Abi and whatever comes with that I love her, good and bad included.
Sending hugs across the ocean!
Noel

Anonymous said...

Like Penny said, Katie, you're not alone. I don't know what it feels like to not have a diagnosis - I can only imagine the pain of not knowing and feel for you (and still hope the dr's will figure things out). I do find myself thinking of things I could do to escape some time (driving off a cliff has crossed my mind!). It's just random thoughts but sometimes things are just too hard to take. I, like you, enjoy moments by myself where I can just think and be in control. Katie, you are a fantastic mother to Jai and doing everything you can for him. Keep digging for answers....Like Heather said, I hope it falls in your lap like it did for her.
Thinking of you,
Tara

Michelle said...

You know, just today I was thinking how nice it would be to "run away" for a few days and just be by myself LOL

I can only imagine how frustrating this whole process has been for you - I was also wondering if you heard back from Dr Morris and did receive concrete answers that he most definitely doesn't have WS?

Kerry said...

I hear you... wish I could stop by so we could go out for a drink :)

Lisa said...

Yep like penny said your not alone. I love the pictures one of my co-workers just was looking at the 6m old pic and said awwwwww he is sooooo cute