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I’m feeling a bit glum lately. Now I know why. It just feels like so many things are falling apart.
True to form, this happens all at once. I actually didn’t realize this until I started putting a list together to update you.
I guess I’ll start with the (potentially) bad ones first, then finish with some good news…
- Amazon Store. What started out as gang-busters has fizzled out. Even on Cyber Monday (and some begging on my part) only a few items were ordered. I removed this from the website today.
- Chick Magnet. This was taken in for inspections the week before Thanksgiving. It failed… miserably. It’s still in the garage and I’ll need to make a decision on whether to pay for costly repairs (mainly the manifold) or put it out to pasture.
- Patio/Walkway. The last I heard, this was going to start ramping up this week. Dr. Wiger is running the lead with getting this through the HOA. Unfortunately, we got some significant push-back from an unexpected source (not the HOA, although this might still happen). People can be so callous.
- Toe Blisters. After two weeks, Ryan no longer has any active blisters and they are scabbed over. One is concerning to me, as it has some redness around the wound (but slowly diminishing). I continue with topical care, but it is still interfering with therapy.
- Kitchenette. I’m not sure where this stands. I haven’t heard back from the contractor since he visited the week before last. He originally told me he’d get this in before Christmas, but now I’m starting to wonder if it will get in at all.
- Myself. My wrists are KILLING me and my back is aching without relief. I know this is caused by stepping-up Ryan’s therapy (to compensate for those stopped to allow for the blisters to heal) and doing much more on my own last week.
- Other. Yes, there are more issues. I don’t want to get into them too much (at least not now). Still one is something Sue asked me last week. It is weighing heavily. She asked, “Do you think people are upset with us?” She gave me some very convincing examples of why this might be the case. I mentally added in a few more of my own. My response was a generic brush-off and I hoped she bought it. Anyhow, it’s on my mind… in a big way. Please know I am now working hard to lessen the burden on others. Really, if angst exists then it’s entirely my doing. For good or bad, I now recognize — yes, it was an revelation — I am the public face of this tragedy. Hence, I am responsible for how people feel about us. Failing at this would be failing Ryan. I’m not sure I could cope with that. As it turns out, I’m having a rough time just thinking it might be the case.
And here a some positive things in the works:
- Baclofen. Ryan did well with the last reduction, now over a week since. I have another one in the works for December 12th. I’m requesting to take him to 175 mcg (from 199.7 mcg).
- Butt Rash. This has greatly improved! Not gone, mind you, but better.
- IBRF. The doctor team will be visiting us on Sunday, December 4th. Yes… I said “Sunday”. They will run there standard battery of tests (to include an qEEG). Results normally take a month or so to get back.
There you have it. Another day to plow through. Issues to lean in to.
All Tipladys (should that be Tipladies?) are still here, still praying, never going anywhere. Before Thanksgiving we were very busy getting ready for relatives that joined us from Canada to spend Thanksgiving with us, and more importantly with Bryan’s sister, Lynn, who is suffering with esophagael cancer. One of the cousins came with a stomach bug, which we started passing around after Thanksgiving. We did not wish to share it with the Diviney’s, so we stayed away. We love you all, and we always will. We will not forget you, and you can take that one to the bank.
Ken – you are loved and thought of every day. I know Charlie has been wanting to visit Ryan and it just didn’t work out over Thanksgiving – he hit a deer on the way home from Morgantown so couldn’t use the car to get back up to Northern Virginia. He is looking forward to coming to visit you all over his winter break – I know he will check with you or Kari first. He misses Ryan every day.
Thank you for your updates. I read them as often as I can. We are still here and praying for you always. You are an amazing Dad and you and Sue are doing a great job. I know Ryan has thoughts, memories and sees and hears you there right in front of him every minute – YOU are what keeps him going and trying.
Love to you all ~ The Beebes
keep the amazon link going.
please….
Ken, please don’t think we have been ignoring you. Quite frankly, I am always worried about taking germs to Ryan or you. We still love you and yours. I’m sure part of your blues are because Kari’s break was so short, but she will be back soon (and probably for too long). Please let us know if you need company and put that amazon site back up! And now I know where your “take us off the food list” came from 🙁 (and I was just learning how to cook!) Chin up!
Me too, Cam. I was finally trying to learn how to cook better. Don’t give me a reason to stop, Ken!!
Ken, sorry your feeling down, but hang in there. Everyone has days like this at times; all of us. Sometimes, the weather contributes to this — gray cloudy days aren’t as uplifting as beautiful sunrises and sunsets. If relationships find you with less visitors, remember you are never alone. You have your friends on this board, and you have God who is with you along every step of the way — there is no way you could do what you are doing on your own. God bless you and we are thankful for the items of good news you point out today.
Wish I had a magic wand, or a special prayer, that would make all the pain, all the hurt, all the trials and tribulations go away and Ryan open his eyes and say “Hi, Dad.” Alas, I don’t. All I can say is, no matter what, every day, SHSP.
Ken, I honestly this is a lot and you need more help or… utilize your nurses more. I think you may be the type of person that would rather do it yourself so that it gets done right, but you need to release some of that so you can continue on. You may need to get away more and possibly join a caretakers group. Look at it this way, you are really helping Ryan when you release some of the duties to others and take care of yourself.
The bright side in this is that Ryan is responding very well to what you have been doing for him and that is all that really matters. Soak your wrists and back in a warm bath or apply icy hot adhesive patches. I agree with what everyone is saying. As for what Sue is saying that”“Do you think people are upset with us?” Well I know I am not. Have no reason to even be upset with you. Hang in there. Are you and your wife able to take a night out for dinner together?
Ken, re: your concern about upsetting other people: “The people who matter don’t mind, and the people who mind don’t matter!” You keep doing what you do best- taking care of Ryan and the rest of your family. And we’ll keep doing our part to support you , whether it be emotionally, physically, monetarily, spiritually, etc. Focus on your family and your posse (those that surround you all to support you and lift you up).
Dear Ken-
There isn’t a day that goes by that I don’t think of you and Sue and your sweet, sweet kiddo’s. I am still praying for all of you – by name – like I said I would.
Additionally, I am so sorry that Sue asked you that question. I know you clarified by saying it was the absence of relationships, but that just made me so sad.
You are one of the strongest guys I have ever known (of). I’ll admit: I’m in awe of you and all you do. You are the total glue holding your family together. That is a huge thing. Team Diviney admires you and dare I say: we ALL wish we could make it all better.
We’re here for you…for ALL of you, Ken~
Hi Ken! I’m a fairly new reader from Leesburg . I can write more later, but for now I’d just like to join the others to encourage you to keep the store up. I was planning to use it and just told my husband about it. I just haven’t been able to do it yet . I’d love to pass it on to my family and friends also.
Ken, Sorry you’re feeling down, but like everyone said ,we’re here for you Sue and Ryan…Kari of course too. You are doing everything in your power to make Ryan improve….Whoever (relationships) or not,..would be mad at you ..Do they REALLY know what you go through each day……ignore… there are so,so many people here to help you in whatever way we can. Along as Ryan’s wish list stays. .Hopefully some one will know a shop or like Jo said a highs school mechanics class where”chick””machine can be fixed…Glad rash and blisters are better and reduction worked..You better start taking a little time ( I know there’is no time ) ,but find it ,anywhere just for you. Hopefully Patio and kitchenette will be taken care of soon and let’s run other people out of town ( no compassion ). Ken try to feel better. Wish I lived near ,really do :(. Love Gail
I love everything I’m hearing from others here, so there’s not too much more to add. Just know that Team Diviney is still alive and well. As for the haters and those who have foolishly walked away from a relationship with your family, it’s their loss. We are the ones who are blessed to walk beside you for the duration and witness the miracle of unrelenting love. You made a promise to Ryan that you would never give up on him, and we are committed to never giving up on your family. Please keep us close and don’t give up on us either. (As if you could actually get rid of some of us — ha!) We will continue to pray you through every obstacle along the way. Take care of yourself and let us help care for you all as well. Yes, please leave the Amazon link up yesterday. I actually tried to use it yesterday but had technical difficulties checking out through Ryan’s Store. I believe Cyber Monday deals actually continue throughout this week for many items, so give all of us procrastinators and not-so-smarty-pants another chance! Hugs to you and Sue and Ryan and love to Kari in Morgantown.
And just to put a smile back on your face, I’ll say it: “Peter!”
Just wanted to let you know that I tried to use the Amazon store thru your link yesterday, but it kept crashing. I, ultimately, had to go to Amazon.com to make my purchase.
Hang in there, buddy. I’m looking forward to seeing you next week. (Hey, do they sell Utica Club Cream Ale in Ashburn….LOL!)
Ken, Please do not think for one minute that anyone is mad at you. It is a rough time of year for many, or busy at the least. but no one is mad I feel sure. No one could have done
all this better than you, kari and Sue. Believe me, we all KNOW this. Holidays are always hard. amazon thing for me, just bad timing, but certainly no one is mad. WE all love YOU all. Hang in there we are behind you. If you do not hear from the contractor let me know, I have a friend that possibly could take this on.
I wish I could help, I wish I could give you a million dollars, I wish I could have the best doctors at your finger tips, I wish I could outfit your house and vehicles, I wish I could ease the pain you and your family feels, I wish I could send you on a vacation, I wish I could have someone at your house to help and give you a guilt free break, I wish I could ease your conscience, I wish one day the families of the two responsible gave you help recognizing that they could never repay you, I wish your life was more carefree, I wish. I hope. I care. I feel for you.
amen.
Please keep Ryan’s Wish list up, as I’m planning to purchase a few items but just haven’t done all of my shopping yet. I’d love to know what you need most, and maybe that is clear from the list.
I am amazed at your strength and fortitude, and think of you often as an example of how to care for your family.
Also, consider taking fish oil and curcumen supplements as well as cutting out sugar and flour from your diet. If inflammation is a problem in your wrists, those steps should help–though it may take a week or two before you notice a difference.
Your family is always in my thoughts and prayers,
Beth
The Wish List is still active. I only took down the Amazon Store.
Stewart’s cardiologist told us about Tiger Balm. Kind of greasy, but it works wonders on sore muscles, tendons, back, shoulder–truly, it is amazing. Motrin, Advil and XTylenol are great for pain–been there, done this–both Hobbses. Now, Kenneth, take good care of yourself. Always here.
Ken,
Maybe I missed something about the Amazon deal….. Do they charge you to have “Ryan’s Store” on your site??? If they do, I understand taking it down, but if they don’t, why not keep it up? I shop at Amazon quite often and always go through your wish list. I’ll be happy to still send things for the wish list when I shop there. I too, wished I could have shopped yesterday but like some of the other posters, I can only shop when the wallet allows. 🙁
Re whoever is giving you a rash about the patio/walkway: I find it really heartless if they know about your situation and don’t care. Try walking a mile in the Divineys’ shoes, people!!!!
Ken, Murphy’s Law always creeps up out of nowhere. The good news is, we’ve all got your back and will try our best to help you out of this. I will make a promise to you: If you try to keep that chin up, I’ll keep up both of mine! 🙂
Hugs to you, Sue, Kari & Ryan,
carla
Still here, always here. I’d suggest you put the amazon link back up if it is not a difficult thing for you to maintain. Like others, I haven’t done any shopping and the last time I ordered through amazon, I just popped right over to your page and ordered there. It was easy.
Relationships come and go. The MOST important ones are right where you need them! Much love, me
I’m not hung-up on the Amazon Store. It just didn’t work out. It was worth a try, right?
It’s true, I’m going through a rough patch. Please do your best to put up with me until I come out the other side.
I was too vague in why Sue suggested (and I felt) people might be upset with us. It is more closely tied to relationships (or the increasing absence thereof).
Hi Ken,
That’s really painful. I know we can’t take the place of old friends — all the history and the memories, the laughter and fun from days gone by . But we’re here for you, as best we can be, if not in person, then in spirit. I hope there is never a day that you think otherwise.
A toast to brighter days ahead!
Faith, hope & love,
Paula
Some people pull away not because they’re upset, but because they don’t know what to say or how to relate someone who is experiencing deep hurt or trauma. And still others are afraid of their presence being an additional burden to an already stressful situation, so they stop showing up. No matter what the reason, it’s still extremely painful when it occurs. But if it’s any consolation, I think that such absences are rarely the result of anger and have more to do with feelings of inadequacy and fear.
I believe you are right on the mark Ms Blase
By the way–can you get another opinion on the Chick Magnet? Or are you positive the people you took it too are trustworthy? Is there a mechanic who can step up and help out here? Do you have a Tech Center at Broad Run or another high school? We have had more bad experiences with dishonest mechanics than supposedly qualified physicians, I’m sorry to say. Just call me Suspicious! But I could tell you stories… …
I love all these love letters! It makes me happy to read them, and I presume it makes you and Sue happy also. Lay it on ’em, Folks–share the love! Ken, you need to listen to some good, jumpin’ music, like the One O’clock Jump, for instance–the uplifting kind–and dance to the music. It’s all about keeping your chin up and keeping on keeping on. Music helps with that! We will help, too, tell us about it, just like you are doing. (I wasn’t really kidding about singing–I really hope you sing to Ryan, and who knows, maybe the wind will carry it to us. As I said, Ashburn isn’t that far, as the crow flies). If you phone any one of us, we’ll be there pronto. Don’t you dare think you are in this alone! We are behind you all the way. Even though we are not at your elbow, we will be if you need us. Good thoughts and prayers over the miles, Ken. We are with you. Love, and please keep making us laugh with you. 🙂 Did you hear what you call a penguin in the desert??? Lost!
Ken, I’m sorry for all you are going through. Just take it a moment at a time. I know you selflessly keep Ryan at the forefront of your day, but to continue to be able to do that, you need to take care of yourself too. Maybe think about taking the time to go to a chiropractor or get a massage. At the very least take a 20 minute soak in a hot bath. Something to look forward to is Kari being home for Christmas break in a few weeks!! As every other day, I will be thinking of Ryan and the rest of the Diviney clan today.
I’m not sure why you feel like people are upset with you, but please be assured that I am not, and I see no reason why anyone would be.
As for Amazon, I was simply waiting until I got paid… Can’t do anything until the 1st of the month…
Chick magnet – hopefully, someone will step up and offer to do the work themselves for you. If we were closer, I know my husband would… but somehow, I think Oklahoma is a bit too far to tow the van.
Patio/walkway – yes, people are callous. Is there another approach you can take to get the person who is against this to change their view? If not that way, can you have this deemed a medical necessity in case of emergency? – so that an ambulance worker has a fast way to get to Ryan (heaven forbid) if necessary?
Kitchenette – hopefully, the contractor has just gotten busy, and if someone calls him, (please – just one?) he will give you an exact date and this will happen before Christmas afterall.
Please take care of your own health!!! It is so important!
Keeping you in my thoughts and lighting candles for positive results to ease your troubled mind.
God bless you dear Ken. You are right (meaning you are where you need to be) with yourself, Ryan, Sue and Kari. You are working so hard for Ryan. You know, Ken, there will always be detractors, no matter what you do. I always pray for you (all) that you will not burn out, that the Lord will give you what you need to get the job done. Ryan, too, so he doesn’t burn out. It is absolutely normal for you to feel all the feelings that you experience every day–sometimes it is very hard to stop the raft of thoughts that plague us every day. I am not a psychologist, just using common sense here. These detractors have not walked in your shoes, Ken, please just remember that. You’ll just have to let it ‘roll off’ and stay focused on Ryan. You do not have to please everybody who thinks they have a clue. Those of us who love you all understand; the ones who don’t, well…..the heck with ’em.Yes, it would be great if you could have some time each day to just recharge your batteries. I guess you grab a moment here and there toward this. I know that YOU know, in order to care for Ryan, you have to also take care of YOU….i don’t mean time away from him–i mean when you need to sleep. Ok, i’ll stop now–Thoughts, daily prayers (it’s ‘ok’ if things fall apart as long as it is NOT Ryan or You. Murphy’s law and all that) and so much love to you all, always. Annie
Like the others said, I wouldn’t sweat the Amazon store. Some of us have to save up two to three paychecks before we can go shopping, which means we have to skip Cyber Monday completely. I miss out every year and get around to shopping when it’s most financially convenient for my wallet.
In addition to massages, ice packs and temporarily wrapping your wrists in quality ace bandages can relieve pain. Also, local convenient stores offer wrist wraps for under $10 to help alleviate soreness.
The notion that someone would be upset with your family is maddening. Whoever they are needs to stop and seriously think about what life would be like if they were in the shoes of you of Sue. I say don’t even waste time thinking about them and keep your mind on all of those who love and support you and are genuinely rallying for Ryan.
I hope one day soon the positives will out weigh the negatives. Here’s the good news, you have a lot of people who are NOT upset with you and why would anyone be?? The amazon thing, truthfully I only go on to purchase for Ryan. I’m not a cyber shopper, only for certain things. I was afraid that you were going to take down Ryan’s Wish list, I’m happy to see you didn’t, however, now I can’t check to see if you’ve received somethings I have sent. I know the holidays must be playing a big part of how you are feeling, but let’s look at the positive here – Ryan is in a much healthier place this year, you are not in a hospital room. I so enjoyed seeing your family enjoy each other and your Thanksgiving post was so beautiful. While sometimes we dwell on the things not right in our lives, we really should look at what’s good and pure in our lives. I know that is sometimes hard to do, especially when you see and feel so many obstacles, but please know that there are still people who care and would do anything for you and Ryan. Love to all of you!!
Ken, try not to take the Amazon thing to much to heart. There are probably a lot of procrastinators out there just like me. Good intentions, but busy or to slow to take action. So sorry to hear about all of the other obstacles…just try to remember, that’s all they are…obstacles….listen to a procrastinator…best to put those things on the shelf for a couPle of days and come back to them with a fresh outlook. You need to try to
take care of yourself too. Try to take a little time out for yourself today to soak your wrists and massage them well. Hot shower on your back and stretches might help too. Ryan’s blisters will get better… You are taking good care of him and it just takes time. You are fantastic at having the ever watchful eye over him and his healing. The downside to being so attentive is that it seems to take forever to see improvement. Keep true to the course and stay positive. It will be better soon. Have faith in that. Prayers continue for you, Sue and Ryan. And by the way, I seriously doubt that people are upset with you guys. When we are weary, little things seem bigger than they really are, our minds tend to play tricks on us, and we often times become more sensitive to things around us than we normally would be. There are many of us out here pulling for you and always praying….without a doubt, the Divineys are well loved and never forget that! Love and prayers for you especially today to see you through this rough spot.
Peggie