For a least a year now I’ve kicked around the idea of allowing myself to make my way to a local watering hole every other week or so. Maybe even just once a month. But, like Sue tells people, I have trouble just going to the mailbox. Sadly, that’s true. So far only my daughter, Kari, can get me out of the house. She’s the perfect wingman and knows just how to take my mind away from the despair that I call “life”.
My ideal night out is one spent entirely by myself or one other “wingman”. If I could muster up the resolve, I’d head to a place where I’m not well-known (this is the challenge), but this means being further from home. I’m not sure I’m ready for this. Someday maybe… who knows. Sometimes a guy just needs to silently cry in his beer or strike up a conversation with a complete stranger that doesn’t always come back to the Ryan. The same is true for Sue. She needs this too, but I suspect she’d rather forego the “lone wolf” approach in lieu of being surrounded by friends.
My life will never be the same. I get it. I’d be foolish to hold on for it to be as before. It all boils down to just one thing… coping. It’s a matter of making it through this life by managing heartache and despair. I’ve had enough pain for one lifetime. By damned, I’ve had enough for several. In many ways I’m proud of the way I’ve held up so far. I’m not sure many other men could. Mine is a life based upon resolve. People tell me I’m the strongest person they know and I’m quick to point out that what they see as my strength is my fear. They look the same, so I’ve learned. Maybe, and I’m just thinking out loud here (and not bragging… at least too much), I’m as strong as I am scared? That, my friends, would be a mighty powerful mix! To waiver would only hurt Ryan. When I just want to collapse on the floor (the fetal position comes to mind) and cover my eyes and ears, blocking out the world, I remind myself that it’s not about me. It never really was, I suppose.
It certainly never will be, I’m certain.
Now that I think about it, I suppose going out for a burger and a beer every once-in-a-while won’t change this. It would be nothing more than painting over rust; the rust will always come back. I was foolish to even consider it. How is it that I trust my instincts completely with Ryan and Kari, but not toward myself?
- Baclofen Update: It is now almost two days since the reduction and Ryan is tolerating it like a champ! He did well with his therapy yesterday and was comfortable over the past two nights. Do you realize that Ryan was at a rate of 400 mcg just 8-1/2 months ago (now at 30 mcg)? This is a 93% absolute decrease! I’m so happy we took the risk and went at it aggressively.
- RT300 FES Part: The replacement part did not arrive yesterday, as promised. I checked the UPS shipping details and see it was sent out yesterday morning and is out for delivery now (as of 6:09 am today).
- Nursing Situation Update: We still are faced with open shifts. In fact, we plodded through another one last night. Perhaps the best way to describe this impact is to quantify it and let you continue to decide. So here are the facts:
- The nurse walked off the job exactly one week ago today. As of yesterday late afternoon, there was no progress in back-filling.
- Month-to-date, 23.5% of nursing shifts went uncovered. This is 48 hours.
- 75% of shifts went uncovered over the past four days.
- I was informed that there is still no coverage for this Saturday.
- With no prompting on my part, I was contacted by a nurse who cared for Ryan some time ago. She said the agency never reached out to her to cover the shifts.
- If the situation continues, the month of April is projected to lack coverage one out-of-every three shifts (33.3%). This is 120 hours.
- I missed two benefit events this month for Ryan resulting from non-coverage.
- The Regional Director clarified the nursing agency’s overtime policy. The short answer is she has complete authority and will not provide more than eight hours. What she told me is her boss, the V.P. of Business Operations, blessed any decision she makes in this regard. Effectively, he is now as vested as she is. I need to check on a few things, but will give him a call (merely as a courtesy) to confirm he delegated this authority. My intent is to methodically make my way up the agency’s corporate ladder, hoping someone is willing to help. I want to make sure I first give them EVERY opportunity to make this right. I won’t accept that this is their company’s culture until I hear it from their top brass. I decided to see this through, for Ryan’s sake and for all those who rely on dependable, professional care. The simple fact is this has already gone on entirely too long for any reasonable person to not be outraged at how we are treated when we did NOTHING to deserve this.