Wednesday, July 24, 2013

A Shift in the Conversation

Today is going to be a 2 pot of coffee kind of day. I've been up since 4 am when Simon's pulse oximeter alarm went off, not because of a seizure (thank goodness), but because of a momentary drop in heart rate which has been happening from time to time while he has been on the high-dose valium.

So, he's okay, but I am not, and I can't get back to sleep.

It has been a rough week here and the compiled stresses have been ebbing away at my ability to stay positive, present, grateful. I think, perhaps, I just need to acknowledge it. Then, maybe, I can get back to being positive, present, grateful (not to mention functional).

So, let's acknowledge it. Recently, there has been a change in the conversations I am having about Simon, with his teachers and doctors and therapists. No longer are "the professionals" saying things like "Lots of kids go though [insert challenge] and get better, they just need a little extra time and extra help."

No... I haven't heard that in a while, and I did so cling to it.

Instead, they are suggesting more interventions. Everything from more/different medicines, to more therapy programs and clinical evaluations, to more specialized (private placement) schooling options. Yikes.

In addition, yesterday when I picked the kids up at school, I had to have my first conversation with a teacher about Simon being treated unkindly by other kids on the school bus. Something I only knew about because his sister was with him (and defended him) and let me know about it. But, the fact that this has started (every special parent's fear), and that Olivia isn't often going to be there to defend him in the future, and that I may never even know about such things happening because Simon still can't tell me, is a difficult thing to come to terms with.

We are stepping into new territory, turf I never wanted to be on, and I am overwhelmed and sad and this Pollyanna is just plain pissed off.

On top of all that, because I am a working mum, things have been even more complicated. Crazy shifting schedules choc full of appointments are making planning and getting things done tough (and honestly I know things won't get well sorted until maybe October.. I hope...). And, I have been feeling both a desire and a pressure to pursue some continuing education (darn technology keeps changing.. one has to keep up!), but I don't feel that I can act on it right now.

My breaking point came yesterday afternoon when Brian came home telling me about an awesome workshop he went to (we are both in the same field). I had hoped go to this same workshop, but it conflicted with an important therapy appointment for Simon, so I could not attend. Hearing about it, and about all the other folks I knew who where there, and then having Brian (innocently) tell me that "I really need to teach myself this stuff," made me even more disappointed I'd missed the workshop... then worried... then pissed off.


So, I went to Target. I bought some new bins for the closet (because when the going gets tough, cleaning out cupboards is a great way to assert one's control over the universe) and a lipstick (because I like lipstick), and I just wandered around for a bit trying to refocus my perspective. Trying to remember positive, present, grateful. Trying to just be okay.

And, I know I will be. I know I will continue to do everything and anything to give Simon the best chance at as much health and independence and happiness as he can possibly have. I know I will find ways to continue to make the work-life "balance" (HA!) work out. I know I will get back up on my feet, stay on the path of positive, present and grateful, and cope with all that may be coming one step at a time.

I know it, because I know it is what has to happen. And I know I am tough, smart, resilient, and determined enough to make it happen. And... well, look at that. There is a positive thing I have learned and am grateful for.

I'm finally learning to have some faith in me.