Yesterday we found out the results of a urine culture. It was taken to see if the highly-resistant urinary tract infection (UTI) that Ryan battled since April was eradicated. The culture didn’t grow anything out! This is huge. If the bacteria was still present it would not be good. No, not at all. It’s one that all oral antibiotics can’t touch and IV antibiotics are limited. Ryan, at least for now, is infection free.
I’ve been through this too many times to celebrate
to0 much at all. For the past year it’s routine for Ryan to overcome a UTI, only to get another, usually about three weeks later. This cycle needs to break or the outlook is bleak. There are only so many times a person can be placed on antibiotics before the bacteria mutates to defeat them.
Each day — even more lately — is lived wondering if Ryan is just weeks away from an infection he can’t beat. I try not to think about it (but often do) simply because there’s nothing I can do except keep searching for a magic bullet. It’s a hell of an existence being in constant fear and acting in desperation. It wears on me and I am thankful that I’ve found myself resilient beyond what I ever thought I was capable. I suppose fear and desperation can bring that out in a man.
People call me stubborn (some notably more than others). I was told this just last night… again! Sue pleaded with me to go out. Have a few beers at the local pub. Blow off some steam. I refused to leave Ryan, even when it escalated to being called a mess, depressed and “beady-eyed” (I had to laugh at that one).
Yes, I am stubborn. I ask you, why is that always considered a bad thing? I contend it’s not, given the circumstances. There are times when a guy must dig in his heels or lower his head to plow headlong into a situation, no matter how scared or exhausted. Any man worth his life-giving testicles doesn’t run (and hide) from responsibility, whether by their choice or placed upon them by others. No one could have ever told me that being a dad, let alone being a man, would take me to the brink. I refuse to let the situation lessen me. I’ll just hold on to my manhood (figuratively), thank you very much.
Instead, I’ll just continue to be a stubborn dad, but I’ll work on being less beady-eyed.
Well, I feel I do understand what you are going through. I always hated when people told me to get out of the house. One time a couple of friends (who are nurses) made me go for a walk. I did and they felt I wasn’t away long enough and locked the door. This just caused me to have a panic attack. Not the first one! Every time I leave the house when I don’t feel comfortable, I feel miserable and panic. It took a long time for people to stop pushing me. It equally pisses me off when I do have plans and work up the strength to leave the house knowing my daughter will be under someones care that I feel comfortable, and they don’t show up!! The list of people I feel comfortable leaving my daughter with are two and only if they are here together. Anyway, I don’t mean to ramble about myself. I just wanted you to know I understand. Hopefully there will be a day when you can go out with Ryan and both enjoy the day! Now that would be heaven. I hope with father’s day coming up you can have everything done as you like (directed by you while you sit back with a beer and TV) You can oversee Ryan’s care while enjoying a game and a barbeque, or even an outing to someplace quiet you all love, overlooking a lake maybe and listening to music with Ryan there. Someday Ryan will recover and may remember you taking him to the lake. If there is balance in the world you are due for a whole lot a great loving things headed your way. It will happen, because you DO make a difference to everyone that reads your blog.
Not only do you need to get out, you need to get out WITH SUE. Trust the nurse for 15 minutes and walk around the block together. If the sky doesn’t come crashing down — and it won’t — try 30 minutes next week, then 45 minutes the week after that, and then, the next week, take a trip together to the pub for a pint.
I don’t know what Ryan would think about what caring for him is doing to the two of you — as individuals and as a unit — because I don’t know him that well. But I do know what I would think if I were in his shoes. I’d hate it. I’d want to see the two of you laughing together and giggling and holding hands. When I used to see my own parents that way, it made me happy and peaceful in an all-is-right-in-the-world kind of way.
I know all is far from right in your world, Ken. But, IMHO, you need to focus more on yourself and your relationship with your wife. The care you give Ryan is exquisite. You would hardly sacrifice a thing by easing up a little so you could rest a little sounder, breathe a little deeper, and laugh a little deeper. Caring for the caregiver *is* caring for Ryan.
I know our situations aren’t exactly the same, but there are enough similarities that I believe I know whereof I speak. Could be wrong. Don’t think I am.
I echo Renie’s comments. One of the things that has made me sad reading this blog is that your relationship with Sue doesn’t seem to have the same priority as does your care for Ryan and your time spent with Kari. I don’t wish to minimize either of those — I applaud your heroic and tremendous efforts on behalf of both children. However, I often feel that Sue doesn’t get the attention/credit for suggestions that she deserves. If she suggests that you may need some time away for a few beers or whatever, even if you disagree, is it wrong to oblige just to validate her suggestion? I apologize for the appearance of meddling/judgement. I have never been in your shoes. This reply comes from my concern for all FOUR or you.
Marilyn, at the risk of being judged, you stuck your neck out to state an observation and offer a suggestion. This isn’t “meddling, it’s “caring.” There is a big difference. As Ryan’s caregiver, Ken must take the very best of care of himself. It is risky at best if he does not, since both mind and body know when they are overloaded. We must hope and pray that he will take a little time off for himself every now and then.
Kathryn Beggs Howlett via Facebook says
I think Cheryl has some good points….
Cheryl Shields Askew via Facebook says
I love it and I’m so relieved for Ryan…… Praise God for your stubborness Ken and you are truly an awesome Dad. I know what you and Sue are going through but it must be a wonderful thing for Sue to constantly see your love and devotion to your family… There are a lot of Dad’s out there who walk away from their families due to the most selfish reasons but you guys have what’s most important. Still and always praying for Ryan… Glad to hear the news about his UTI…. You may not want to venture off for that beer but even stepping out back to relax for awhile would be just as good… I hope that if you take time to look back when this incident first happened and see where you are now and HOW you are now, I hope that you can say it’s better (even just a little)… Ryan is a very lucky man to have you….. 🙂
Gail Doyle says
Ken ,So very glad infection is gone and hope there won’t be any more :). I agree with Sue ,that you should get out for a while. Be stubborn as far as Ryan is concerned ,as you always are, but listen to Sue. Maybe if Jo and I come down and tell you to get out for a few hours , you’d listen to your elders:):)Whatever ,have a calm day and give Ryan a big hug from me
John Maletta says
Beady-eyed? That’s funny!
Beth Brittingham Richardson via Facebook says
What terrific news! you do need to get out and refresh your batteries. please remember to take care of yourself too.
So glad the infection is gone. 🙂 Ken, there must be a way to prevent these UTIs — we must find it!
Jo Hobbs via Facebook says
Ha ha, Ken. My dad used to say this. He was such a fun dad — always had a joke or some nutty words of advice like the above. 🙂 He would tell Sue to flip a coin to see if you should get out more, “Heads I win, tails you lose.”
The Colangelis says
Thank God the UTI is gone. Let’s hope these stay away for a long, long, time. I do agree with the other poster that you need a break and there is no reason not to, especially when both the nurse and Sue are there to relieve you. Our prayers continue for Ryan and you guys. God bless you.
I am so happy the culture did not grow anything. My prayers continue.
I am with Sue on this one! You are just like my husband who is a workaholic! And if my memory serves me correctly his need to be right and stubborn might help one situation, but it hurts another. Your need to be stubborn and “right” next to Ryan all the time is hurting Sue and Kari more than you know or realize. There I said it and I am done irritating you for the day! Love ya! Enjoy todays sunshine with a beer in hand! I wish my husband would also, but I know he won’t so I will drink one for him.
All I will say, Dr. Stubborn, is show Sue how much you trust her with Ryan and do what she asks. Perhaps it would help renew you before another long week while she works. Maybe a Sunday afternoon is a good compromise ? <3 RKD
Ryan's Rally: We Got This via Facebook says
Jo, now there’s a code to live by!
Jo Hobbs via Facebook says
Never drink unless you’re alone or with somebody! LOL
Bravo, Ken Diviney!! You inspire more people than you’ll ever know.
I hope you can enjoy time with Ryan and Sue on the patio on this stellar day — stellar because Ryan’s UTI is gone, and we can cherish this time under the powder blue sky. Spectacular, for all the knowledge you’ve gained and given to so many.
Hugs, love & always hope
Oh me, oh my! Me thinks that you thinks something is going to happen to Ryan unless you are with him every second. Now, Kenneth, you know very well that between Sue and Ryan’s nurse, he is safe. And besides this, it’s not like you are out of reach if you are right there in Ashburn. I’m not picking on you, dear Ken, but I can see Sue’s point (ahem — beady eyes?!)
Worry and lack of sleep will take their toll sooner or later, and usually it happens sooner. You are an intelligent man, and you know very well that even a little trip to a mall, the
outlets — even Target or Walmart will give you a much-needed break. I have a few years on you, Sweetie, and I know what I’m talkin’ about — Just Do It — after your nap, that is! 😉 But, hey, I’m not against having a beer or three (think Corona with lime) — home is better unless Sue gets out the breathalyzer. 🙂
Rita Caporicci Hoop via Facebook says
Praise God for Ryan’s current clean bill of health and your stubbornness! Sometimes a woman/mom has to find the strength to be equally stubborn, although we can sometimes mask our our scary looks with makeup 🙂 Good luck with that! Sending all of you love and prayers for continued perseverance for as long as necessary.