Synonyms for...

My thesaurus says that the word "tired" has many synonyms - exhausted, worn out, weary, fatigued, drained, sleepy, dog-tired, shattered...I think that today I feel them all.

If you are checking to see how Lila is then I'll put that first and then go into how I am so you can stop reading after the Lila update if you want. Lila is still a mystery. She has been outside a little more today and tolerating it pretty well. This morning she had a pretty bad asthma attack but her emergency meds seem to have gotten it under control and kept it there. I am glad because I really didn't want to go back to the hospital. She was discharged a week ago today and this is our longest stretch out in a month. She is still tired. She is still not sleeping. Last night she was up from 12:00am til 3am and then up at 5:30am. She starts coughing and then wheezing and can't rest. We see our doctor again tomorrow - I don't think there is anything she can add. At this point, everyone agrees that her breathing is not under control, we just don't know why or what to do about it. We are all, doctors included, just trying to keep her stable until we get to Denver.

Back to me. I try so hard to be positive but I am exhausted, worn out, weary, fatigued, drained, sleepy, dog-tired, and shattered. I started thinking about it more after a mother on a message board for special needs kiddos that I frequent posted this, "I'm tired of this ever changing journey and only wish for some consistency. I don't even have the energy to say any more than that." It made me feel so much better to know that I am not the only one who feels this way.

I am not sleeping at night. Even when Lila can rest, I don't rest very well. After all, I might miss deteriorating breathing and she might get into real trouble. Not sleeping at night takes its toll and it really, really is.

Managing Lila's care feels so huge. I am trying to juggle it all, but the balls circle round and round in my head, more and more being added until I am dizzy and dropping them all over the place. Meds three times a day, more if her breathing is bad. Listening to her breathing all the time. Remembering doctors appointment. Keeping her from running around too much. Trying to remember to have interaction with her that doesn't begin with, "Lila come let me listen to your breathing!"

Getting ready for Denver. I need to visit five different doctors offices and two hospitals in the next week to request medical records to take with us to Denver. I need to make a budget and start figuring out how to pay for the actual trip part of the trip. I need to think about food, plane tickets for Ben who will drive out and back with us but not spend the whole time there, someone to preach while we are gone...on and on.

We have been overwhelmed with care and giving from others these last two weeks. I have friends and family I need to call and thank. Really I need to write notes. My heart is full of love and gratefulness; it's energy that I lack. It needs to be done. They have given so hugely to us, they need to know what it means.

We have been planning a vacation - really a continuing education conference - for later this month. We had thought to cancel but Ben and I are both teaching classes and will make more than we will spend. And we need every penny right now for Lila. So I have to prepare for a class in the next couple of weeks.

And there is life - laundry, cooking, cleaning (ha!), trying to sort out a workable work schedule, spend time with Samantha, be a friend somehow to these wonderful people who are supporting us...

I want to lay my head down and close my eyes. I can't imagine it getting better at this moment. I know often I can but right now, I am reaching for the positive and all I can find is this tired blur. The worry is exhausting. The management is exhausting. The exhaustion is exhausting.

Every time I talk to my friends lately I just want to cry but I don't have the energy. It's easier to just say, "I'm okay." She has never been this bad for this long - it's scary and wearing. It seems that she might be improving and I am ready. Something has to give because my level of functioning is rapidly dropping.

Ok. One last reach for hope...Lila is outside right now on the playground - mostly sitting, playing hospital with Samantha. I've gone out four times as I've typed this and she is breathing all right. A week ago she couldn't have done even this. Maybe we are on the way out of this flare up. If we are I will be glad, and try not to waste too much energy waiting for, worrying about the arrival of the next one.