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?
Updates:
- 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.
I hope the nursing company management stands up and does what’s right to restore reliable service. Otherwise, I hope there are additional options through other companies available to consider. Praying for you guys. God Bless you.
Ken! I love your post today! It sounds like you have taken an emotional turn in the road of life up a positive path, and I like that. Just to have you thinking about going out for a while to get a laugh or two is wonderful for all of you.
Just a quick story, I have been working 10-12hour days in this job and come home exhausted. Last Saturday evening I turned on the tv for the first time in about two weeks. The movie, Wedding Crashers, was on. I must have hit at a funny part cause I stayed with it. Well I really needed that movie. I laughed for the entire movie. I realized that I had not laughed for so long that I promised myself I would watch a funny movie every week. This really was a great movie, when my son came home he couldn’t not believe I had never seen it, we laughed about it for another 20 minutes or so. I hope you take yourself up on your idea to go to a watering hole, a movie, anywhere, and are rewarded with the same positives I was. Changing the subject, hoping for a great time tonite at the Dragonfly for the kids. Jon was able to get off to go up for two days to Morgantown. Shame on the nursing agency! They should have sent out an email to the nurses on registry letting them know of available shifts, there is a need for you and they need the work. Poor management. Bad news travels faster then good, when will business learn this?
Ken, you are not coping. You are angry. Is there a psychologist that you could talk to or a parish minister or priest. I did not want to say this but I seriously believe this is very important for you. I hear your call for help but it is echoing through this recent mess with nurse coverage.
Something more must be behind the agency only providing a nurse for just one 8 hour shift. It is physically imposible for you to care for Ryan 24 hours a day. I am picking up on that frustration. I am not sure what to do but I really believe you could get some help with your inner feelings and dispair.
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.
Is this nurse able to help cover some shifts?
Ken, Some great responses to your post!! So glad baclofen reduction is working and Ryan had restful nights .Nursing situation is totally uncalled for,they should always have someone to fill in and know the details of any patient.Why this should be added to your worries, is so wrong! Maybe you could try and go where Rita mentioned,a nice cold beer might be good for you…(have someone pick you up :))Just keep being the Father and Husband you’ve always been. Ryan is getting the BEST care and you all, Ryan too, will get through and make new memories. Always here,thinking and praying..
Love Gail
Ken – SHSP every day. So glad to hear Ryan is doing great on the baclofen reduction – that is awesome. I’m assuming you won’t make it to Morgantown this evening for the event at Dragonfly. You know the whole gang will be there with Kari and I pray it is a huge event in honor of their best buddy Ryan. You know they will have several beers for you. Those kids all love you as much as they love Ryan!! xoxo
I will pray that you find the perfect quiet but friendly spot “where nobody knows your name.”
You. My friend deserve an ICE COLD BEER. Or 10.
I can only Begin to imagine how you feel. I hope things somehow
Become easier. I’m trying to think of something to say but ?
Just know that I and the people who post here are behind you.
I live just north of Philadelphia and I am a family man also I wish
There was a way to come physically help you.
Mr. Diviney,
I am a 2010 graduate of WVU and remember when Ryan’s horrible accident happened. I remember the flyers posted all over campus looking for the insensible people who attacked him. Since the attack I have been following your blog to keep up with Ryan’s progress and to see how he’s doing. I know there’s only so many times you can hear what people say to you before it goes in one ear and out the other, but please know that you and your family are truly an inspiration to everyone. Give yourself some credit…you do what most people probably couldn’t if put in your situation. And you are deserving of a night out for alone time or with friends…everyone is no matter what situation. You deserve to treat yourself to an ice cold beer…or a few. Sending positive vibes to Ryan and your family and continue to support my fellow Mountaineer.
Cheers
Those responses from students/recent grads renew faith in this generation don’t they?
I believe you probably have respite care hours that can be used as ‘overtime’. Did they mention those?
Yeah you should grab a beer once in a while if you can swing it. Hell I’ll bring one over! Bringing some sanity to your life, even in the form of friendship, going to a water hole once a quarter for god’s sake or laughing will make you stronger FOR Ryan. Somehow a tiny bit of joy in your life and Sue’s life needs to sneak in, I have to believe that he would want it that way.
Hello Ken, if you do find out, after all this hassle, stress and aggravation, that sloppy, ineffectual and damaging company policies are indeed this agency’s corporate culture, please let us know. I will make it my mission to spread the word, because I would never want anyone else to suffer as much as this agency has made you and your family suffer.
None of this is fair or right for your family and we feel your appropriate outrage on Ryan’s behalf. Your lives will never be the same again, but we pray with great hope that the Diviney family still has much better days ahead, and that the future you fear will fade away as Ryan continues to progress in his recovery and becomes this amazing young man you never could’ve imagined. We know how much you, Sue and Kari love him (and each other) no matter what, and that’s where your great strength lies — in that relentless love and devotion. We are here for you every step of the way along this journey with Ryan. And I know of a bar not far from your home where you could really escape into another reality once a week (good clean fun, just different!) if you wanted to, and nobody there would know who you are 😉 In the meantime, let us ladies dote on Sue and take her out for a fun evening once in a while… Love you all!
thinking of you today & always.