This year, 2016, hasn’t started off well.
We kicked it off in a serious fight against a MRSA infection that had developed in Ryan. Then, a carport collapsed — under the weight of an epic snowstorm — onto (and into) Ryan’s disabled van. This left me and Ryan stranded at our family’s cabin in West Virginia for weeks.
Once we were finally able to bring Ryan home, we learned our home healthcare agency had reassigned Ryan’s nursing coverage. After spending weeks alone caring for Ryan, it was devastating. I was on the brink of something that goes beyond mere exhaustion. I was well beyond being tired, fatigued, and exhausted. I experienced a physical and mental state that I simply cannot characterize.
I felt as though I were more dead than alive. There were times when it felt like I was an observer to my life. It might be best described as an out-of-body experience, where I was watching myself execute tasks. It was like engaging some weird sort of autopilot.
The thing is, my well-being doesn’t matter one iota. Well, not when it comes to being responsible for another. This time, like untold times before, I had no say. I did what was needed… I lowered my shoulder and leaned in… all the while I just felt like crying. I kept moving toward the light at the end of the tunnel; hoping it wasn’t a train barreling down.
If nothing else, I’m a persistent bastard.
So, here I am on the other side of the tunnel! Looking back, it was dark as hell in there. Anyhow, here’s an update:
- MRSA: The infection appears to be fully defeated.
- Ryan’s Van: It is now three weeks since taken into the repair shop with over $10,000 in damage. There has been no update when it will be ready. The original expectation was six to eight weeks (early April).
- Temporary Transportation: A longtime reader and supporter — who I only knew through social media and never met personally — came to Ryan’s rescue to get him home. Despite his hesitation to be named, I’m doing it anyhow. Tim Ernandes and his friend donated a disabled van. They told us it is not only to get Ryan home in, but to use until Ryan’s van is repaired. Amazing! It reminds me that there is no way I could get through this life without people like Tim. I’m eternally grateful to everyone who has lifted Ryan and my family up!
- Cabin/Carport: I’m planning on heading back to the cabin this weekend by myself to dismantle the dilapidated carport. If I can do this without running into a snag then I’d like to spend a few hours enjoying the mountains on an ATV; with my fishing rod and rifle in tow. The weather is shaping up to be warm (low-60’s) for the mountains of West Virginia!
- Nursing: It was unbearably tough without coverage. I slide a mattress into Ryan’s room to doze off on from time-to-time, but that was the best I could do. I feel (mostly) confident this is resolved for the remainder of February.
Hopefully the next dark tunnel is far in the distance…
Praying for you and your family. God bless.
You all are amazing! Here’s to a better March, April, May & beyond!
SHSP NGA xoxo
Happy to hear that things are looking up. And glad that Tim and his friend were able to help in a way many others couldn’t – what a huge relief it must have been. Think about Ryan and all of you often. Thanks for staying in touch.
Ken, we have touched base before on via your blog. My son is also the survivor of a TBI…my stepbrother died as the result of a group of young men taunting then shooting him, and leaving him for dead at the side of the road. His injury was also to his head. I hate brain injury. I hate what it is and what it does.
I can relate to you because you are one of the straightest shooters I have ever come across in this new world of TBI. You write with rawness, clarity and an undeniable spirit of the opposite of defeat, despite being ground down in so many ways. I water down so much of my emotions, and when I get tired of that I read your post. Thank you for sharing with honesty.
I don’t feel like there is enough we can do for you. Sometimes I don’t feel like there is anything. Is there a continued practical way to help your family through this?
You are a wonderful father. Always holding you and yours in my heart….Nicole, fellow seeker of making sense of a horrible mess.
You are a wonderfully dedicated father.
Thinking of you and the family!!!
Hello, friends! Ryan must have inherited his dad’s tenacity to fight off MRSA, like that! A friend of ours, in a wheelchair due a form of Muscular Dystrophy–another tenacious bastard–he wasn’t supposed live to be 21 & just turned 50!–developed MRSA–possibly via indwelling foley catheter–& was hospitalized for 3 months! I’m so glad Ryan kicked it.
I’m delighted someone has come forward w/a “loaner van.” They are, as you well know, phenomenally expensive & often customized. If/when we ever meet I’ll regale you w/stories of 40 years ago of some o0f the adventures my friend Dave & I–our mission: to boldly go where no wheelchair had gone before! His van cost a mint way back in 1975 & his, too, was insured to the hilt w/a then $100 deductible. I’m glad that’s the case for you & hope you don’t have hassles w/your insurer Sometimes, I wonder why we have insurance. A few weeks ago, after a freak snowstorm, someone slid into my husband Tim’s car at the college where he teaches. It was only $700 damage. He finally paid out of pocket after 2 weeks of battling both insurers.
Good luck to you w/that carport. I think the manual labor will actually do you good–a catharsis, in a way. I’m not sure I understand the problem w/nursing coverage–that’s a whole ‘nother PITA to battle. It’s why we finally hired a “mom sitter” when my mom lived w/us. After a battle w/2 different nursing agencies–even w/a willingness a pay out of pocket for an aide to stay w/mom–we were & are 2 extremely busy men–and I’m supposed to be retired (hah!!!!) we finally engaged Anna, a senior herself who asked for no other recompense than to make an evening meal w/ mom & cab fare home. I will email my friend Susan Dooha Exec. Dir of the NY City Center for Independence to see if she can recommend some resources in your area. I don’t know if they have Consumer Directed Assistants, if I have the program name correct. (In NY, you as a disabled consumer, or your representative, can hire/supervise, even terminate your own Personal Care Attendant & NY State will pay via Medicaid.
Good luck &* God bless you all
PK Miller & Tim Montgomery
You are amazing! The love of a parent is like no other
Wow Ken!!! You did it again!!! Against all odds you pulled Ryan out the other side of that infection!!! Exhausted and drained beyond description and you still did it!! Thank God!! I know you draw a lot of your energy from your wife and daughter, together, with Ryan, you guys are unbeatable!!!
So glad to hear Ryan’s infection is gone .Hope you get away ,Ken, for some R&R Praying you will see that light real soon Love to all
Where was the MRSA infection and what finally kicked it?
I’ll never forget the time my mom had a UTI, the bug was MRSA, and they were talking about weeks of IV antibiotics, in an in-patient setting. Then the results of the C&S came back and, lo and behold, the bug was sensitive to Bactrim. Yep, good old-fashioned Bactrim. Now I don’t get too worked up about MRSA until it’s been cultured and tested.
Mom also battled, at one time or another, VRE, multi-resistant pseudomonas, Klebsiella pneumoniae, and C. diff. Like you, I hoped and prayed (still hope and pray) that doctors and patients would be cautious about antibiotic use so as not to create a resistant-to-everything bug. As you said, we only have so many bullets.
Such good news about Ryan! Prayers continue for him and all of you Divineys, always <3
There is a front row seat in heaven for you Ken Diviney! Too bad you have to go through hell to get there. Hope your new nurses work out. Thanks to Tim Ernandes for your contribution, you are an awesome human being. God bless all of you!
When one door closes, another opens….I thank God for Tim’s generosity. Thanking God too, for the MRSA being gone!!
Finally – I’ve never seen someone exhibit such strength fighting brick walls the width of the White House, but by God you do it, Ken. Mad respect for you.
I do hope you are able to break away and enjoy the mountains this weekend. You deserve some relaxation!
Sending love/light to all of the Divineys. And as always, still here – still praying!!
Carla
<3
When it rains, it poors sometimes…unfortunately 🙁 But, it sounds like the sun is slowly starting to shine back down on you guys now! What a generous & amazing thing that Tim did for all of you…there are definitely angels among us! Praying everything goes smooth with the carport & that you can enjoy the mountains this weekend!
God bless your soul! You should get the father of the year award and your wife I’m sure should get the mother of the year! Ryan Knew what he was doing when he picked his parents!!!
Your Gods angel!! Xoxo
What a journey you all are on. God gives you these tunnels in life to remind you that you ARE strong enough. You ARE capable. You ARE not in this alone. Sometimes we need to be reminded of all these things to continue a journey that is so tough we can’t imagine going on. We continue to keep your family and Ryan in our prayers.
Ken, I’m so happy the MRSA outbreak has been defeated! I always knew Ryan was a fighter and that this was just one more battle. You are such a wonderful father to him and he knows it. You, your family, and especially Ryan will continue to be in my thoughts.
God keep you in his strength and comfort. <3
Ken Diviney my prayers are always with you
…….as if anything else could happen. Your family has been tested…..oh my !!! Hopefully spring is just around the corner, and things can be back to some kind of normal. Praying for some peace and comfort for your family, and of course for Ryan. Praying all is under control with the MRSA too.
You must take care of yourself both physically and emotionally!! If Ryan is aware it must devastate him to see you running yourself ragged! Just my opinion (and belief). Take care!
All the prayers worked for eradicating the bacterial infection. Praise God.
Wow! You inspire me with whats ahead for us with my son. Awesome that a van was donated to help you through until yours is ready again. There are some pretty great people in this world who are able and do help us through the rough times. Hang in there!
I’m so sorry and sad for all you have to go through. Yet, at the same time, I am truly astounded by Ryan’s and your resiliency. May you continue to accept the love and support given to you by those who step up to meet…no, exceed your needs and do what matters most to you and yours. Keep going.
Glad to hear Ryan kicked the MRSA. Enjoy WV … I know my husband is chomping at the bit to get out to our property near Weston in March so he can recharge. I’ll wait for warmer weather. 😉
you keep on keepin’ on Ken. Won’t “like” this status, but from the wilds of Delaware I will keep you all in my prayers. God bless you, the “other” Divineys 🙂
The rest of the year will be better. In our continued thoughts and prayers. Ryan.
WHO DIDN’T KNOW YOU WOULD BEAT MRSA TO IT’S DEATH????? So so happy!
This post restores my faith in humans, for that I thank Tim.
As for the insurance …. most times they are useless and this time makes me furious. Sending positive thoughts you find someone to help soon.
Enjoy the mountains, soon we will be getting buds on our trees and long summer days. 🙂 Go WV!
God Bless Ryan, you & your family! I am amazed by your strength, you are a wonderful father! And thank you for sharing the story of Tim’s generosity…it gives us all hope to know there are such wonderful people in this world! Continued prayers!
God bless you you persistent bastard! oxoxoxo
Is the damage to your van covered by insurance?
It is, except for a small deductible.
So glad to hear Ryan is out of the woods with the MRSA…and so amazed at folks like Tim who step up when they can provide something so needed. What a community of love you have brought together here. Here’s to a little bit of alone time in the woods for you this weekend…you definitely need and deserve it!
You are an amazing family. I pray that rest of the year will be better for you. May the mountains of West Virginia bring you peace as I know they can. There is no place as spiritual as those mountains, that I know personally. Hugs and prayers for Ryan and all of you.