Thanksgiving

I hope you all had a good Thanksgiving.

We are now in Arizona, the Valley of the Sun. The weather is great, and we are adjusting very well. We left Oconomowoc the very end of October. We stopped in Des Moines, North Platte, Denver and Albuquerque along the way. We stayed in Denver two nights with our son PJ, and his wife Kersta. It was an adventure, but we were glad to arrive in Mesa and start our new winter life here.

I meant to write sooner but kept putting it off until I got in the mood. Next thing you know, a month has passed, and to be honest I had a few low points, and just did not feel like writing. By the grace of God I know I will get through these low times, and come out better in the end.  Jeanne was a trooper driving  six hours a day and hauling all my gear in and out of hotel rooms.  She had to set up my special bed each night after driving most of the day.  I hated that I could only watch her do all the work and I got quite depressed about that.  In fact, she's the one that should be depressed since she is doing all the work!  But she is up and positive and I am acting like a baby.  I should be happy to get out of the work!  Life is funny that way.  Jeanne keeps saying, "this is what God has given us, what are we going to do with it?"  That phrase always puts things in perspective and reminds me what a strong woman God has given me.
  I have had a good deal of nerve pain in my left arm.  It's my greatest obstacle to a good attitude .  We have tried acupuncture, but that does not seem to help. So now I am listening to the power of positive thinking by Norman Vincent Peale.  I can do all things through Christ who strengthens me.  No negative thoughts.  Jeanne keeps saying, "take your mind off the pain", which ticks me off, but I know there is something to that because when I'm occupied I don't notice the pain as much.  There are times that it doesn't work, but there are more times than it does.  So my new goal is to overcome the pain with a positive mental attitude and as much as possible disregard the pain.Enough of that!  The sun is out, there are books to read and a wife to kiss.  I will try not to let so much time pass before I write again.God bless and thanks for listening.God is good.Pat

Bohr Report

Well, it's been awhile since you heard from me, Pat, but after some nudging from family members, I feel the need to tell you what it's really like to be a quad. I think this will also be therapeutic for me. I'm going to let it all hang out and tell you how I'm really doing. But before I get started, I want to praise God in the highest, because I no longer need dialysis! My kidneys have returned to function, yes, my kidneys are working! I can't tell you how big a deal this is for me. And, I thank all of you that prayed from the bottom of my heart, thank you so much.

So now for all the friends that have asked my family members, "How is he doing? No, how is he really doing?" When I meet people on the street and they ask, "How are you doing?" I always say, "I am doing well, thank you". I never say, "Well I cried the other day for an hour because I can't ever rollerblade again." I don't say, "Well I had an accident, I pooped in my pants and was so humiliated that I wished I had died."

Now don't get me wrong, God is good, and I believe He has something in store for me to do. I believe good will come of all this, and in fact much good has all ready come from my accident. So when I tell you about my bad days I am doing so because I think people really want to know and again it will be good therapy for me. So here we go, what you are about to hear may not be appropriate for small children, reader discretion is advised.

After being in the hospital so long it became my home. I was very comfortable there, everything was predictable. The worst part was waking up every morning, opening my eyes and trying to move so I could get out of bed, and then remembering that I was a quad. I'd sometimes get a lump in my gut and think, no, not me, not forever. But then the nurses would come in to get me up and in my chair and I'd forget my plight. I had been using a chair supplied by the hospital for the first months, and then my chair arrived. The nurses were excited and said, "Wow, this is a beauty, Jean picked out a really nice chair for you!" But I thought, "Why, I won't be in a chair for that long, what's going on?" It took an a long time for my brain to catch up with my new condition. And still I will try to kick open a door with my foot and is just doesn't happen. But in the hospital they kept me so busy during the day with therapy that I didn't have much time to think about my new state.

There were no reminders of my old life. Jeanne brought many pictures of our grandkids and posted them on the wall where I could see them. But she was careful not to bring anything that would remind me of what I couldn't do. She made sure there were no pictures of me sailing, standing, driving or anything that would remind me of what I would never do again. She knew it was going to be a huge adjustment and it would have to happen in steps. She's a smart woman who has amazed me.

This is all for today, but I will continue sharing what I experienced when I first came home and the days that followed. This blog will now become my journal, because I feel I am finally ready to go back and remember what has happened. It has been a hard road, but God has never stopped being good and being my source of comfort and strength, but more on that later. Glory to God.

August Update

Yikes, another month of summer gone in a flash...time again for a Pops update. It's been a pretty good month for mom and dad, but it started out with a little bit of a scare. Mom and dad were driving one afternoon when suddenly dad couldn't speak. For about five minutes, he was fully alert but he couldn't talk...only garbled mumbling. Mom took him immediately to Froedtert where they kept him overnight for extensive testing. Apparently this mini-stroke was the result of a piece of plaque randomly dislodging itself and causing a minor blockage. A fluke thing but very scary for them nonetheless. His tests showed nothing abnormal and hopefully it will never happen again. It may have been minor, but a stroke is a stroke, even if it is "mini".

Pops got some great news earlier this month when he was able to drop his Wednesday dialysis completely. This is a major 'yahoo' for him because now he's down to just Monday's and Friday's. His kidneys seem to be on the borderline for dialysis, so keep praying that they would improve. Pops is no fan of dialysis.

After visiting the nerve doctor quite a few times, it was determined that dad is not eligible for nerve transplant surgery at this time. There are not enough good nerves in his left arm to provide for a good transplant, so right now all he can do is deal with the nerve pain and hope more nerves regenerate to allow for future surgery. His left arm is still bothering him on a daily basis, so we pray for those nerves to get down to business and do some regenerating.

Pops took his first road trip this month to join the fam in Chicago for Grandma Jinnie's surprise 90th birthday party. (Check out the new pics.) It was a great day and she was very, very surprised. I know what you're thinking...isn't a surprise party a little dangerous for a 90-year-old? Not Grandma Jinnie...heck, she runs faster than I do. P.J. and Kersta even flew in from Denver and Uncle Ward from Hawaii...it was great. A fantastic day thanks to Grandma's sweet friends, and Pops didn't mind the four hours in the car. The next big road trip??? Arizona for the winter...

Slowly things seem to be winding down for Pops as his weekly schedule lightens up. He just finished his last Tuesday occupational therapy session at Froedtert so now his Tuesdays, Wednesdays, and Thursdays are reserved for random doctor appointments, stopping in at Genesis, and hanging out at home. Once in a while he gets stuck shopping with mom but he makes the best of it...like last week while mom was shoe shopping he entertained himself by asking people to direct him to the running shoes. He's funny. My favorite memory of this month was watching him race across a parking lot at 8 miles an hour and then stop abruptly right in the middle to do doughnuts. Well, that and when he told the story about him slipping into the seat hole of his shower chair until he was kissing his knees and then mom had to pull him out, which, as you can imagine, did not go as planned. The most entertaining stories tend to come from shower night...but that's to be expected when you're dealing with mom and a wet, slippery quad.

On the technology front, Pops now has a new laptop and a new dictation program that types whatever he says. He can pretty much run his whole computer just by speaking, which means he's ready for some electronic communication! His new email address is patbohrman@yahoo.com...feel free to say howdy.

Long ago when he was still in the hospital, dad was told by his surgeon that this is a marathon, not a sprint. This new life with his new body takes perseverance, determination, and a steady pace. As he continues to adjust to life as a quad, there are up days, down days, and just plain blah days. But life is good. God is steadfast. Thanks for the love. Keep praying.

And if a quad ever approaches you in a shoe store and asks where the running shoes are, don't fall for it...consider yourself warned.

Pops Update

It's been over a month so I'd say it's finally time for an update on Pops. It's hard to remember all that's happened since the "drinking of the pee" incident...there haven't necessarily been any huge steps made but dad continues to plug along at his daily routine. Overall, he's doing pretty well. The hardest thing for him continues to be the intense nerve pain that he almost constantly has in his left arm. On good days it's there but he can deal with it. On bad days it keeps him from doing much of anything as, according to him, it feels like being constantly stabbed with knives. It's awful. It seems so unfair...he's paralyzed and can't move yet he feels this horrible pain. Not cool. We are still told it could be good, that eventually he could get some movement back but there's no guarantee. To think that this pain could last forever makes us all cringe. The ray of hope is that he will most likely be having nerve transplant surgery in the next month that will allow him more use of that arm. Another possible surgery could give him more movement in his right hand. These possible surgeries give him and all of us hope. At this point the nerve pain is so bad some days I think he'd just like to amputate the darn thing. But he's being patient and hoping the surgery will be a success.

An exciting thing happened last week when he finally had his trach hole surgically closed. The trach hole that was supposed to close 3-5 days after the tube was removed has remained open the last 4 months so they had to do a skin graft to get it to close. All this time he has had to cover it with his hand to speak cause he would lose a lot of air. He sounded louder even right after the surgery and is happy to finally be able to scream. Well, not exactly scream but certainly speak with authority.

Another exciting thing was that we got their house cleaned out and already have an accepted offer! What a huge relief that was...mom worked her butt off sorting through years of 'precious things' (a.k.a. crap) and after many late nights the place is finally empty. We picked on her a lot for keeping so much junk over the years but we actually had a lot of fun looking through old stuff and laughing. Dad had to say goodbye to his "man room" (if you've seen it you know how cool it was) which was tough. Even tougher for him to deal with was the fact that none of us kids wanted many of his 'prized possessions', most of which he had found on the roadside or were discarded in dumpsters. He was also astounded nobody wanted his First Place Booster Club Trophy for Best Homecoming Float in 1995, but, um, aren't memories meant to be kept in your head anyways? We had fun but are all glad it's over.

Now mom and dad are working on getting totally unpacked and settled into their place at Mike and Becky's, and it's fun to see the routine that's unfolded. Cole wakes them up when the nurse comes in the morning, and there's usually some driveway races in the morning with Bapa and the kids. Cole usually wins but only if Bapa stays in Drive 1. In Drive 2, let's face it, those kids are toast. Fans and I are over there at least twice a week since Fans is officially the captain of the "Shower Team". Mom continues to reign as decorated captain of the "B-Team", and after last month's performance she now holds the title of "P-Team" Captain as well. God love her. They are still busy with a few trips to Froedtert each week and dialysis on Mondays, Wednesdays, and Fridays. The good news is that his Wednesdays have been reduced from 3 hours to 1 1/2. The less dialysis for Pops, the better...he doesn't enjoy it one bit, especially when his nerve pain is bad.

Overall, things are going well. Dad has had fun reconnecting with friends and family and enjoying a slower paced life. There are still many blessings pouring out of his accident and it's pretty amazing to watch it all unfold. Relationships being reconciled, faith being deepened, life being appreciated all because of one spinal cord injury. Even with the hard days, the exhaustion, and the frustration that is inevitable, there is still immeasurable joy. I see it in both mom and dad and when I do, I thank God. He really is the ultimate healer. A reminder that we are all being healed through dad's experience, that God does not want us to be the same we used to be. He wants us changed. It's easy for me to forget that, it's easy for me to slip into my old ways, to not hunger for God like I did when dad was so sick in the hospital. But when I see dad laughing, loving, being a better father than he ever used to be, God reminds me what He has done, and it is GOOD. What an amazing God we serve.

To HIM be the glory.

Urine my Heart, Urine my Soul....

Yeah, I thought the blog was over...I thought there wouldn't be more to tell. Boy, was I wrong. First things first, Pops took his seventh swallow test on Tuesday, and to be honest we all sorta expected him to fail (himself included)...I mean, it's hard to get excited after six previously unsuccessful attempts. But he gave it another go and.... HE FINALLY PASSED! And with flying colors, no less. His swallow was 100% normal...no having to turn his head or anything. Can you believe that? After six months of tube feedings he's now able to eat and drink whatever he wants, no thickener required. He didn't think he missed eating that much, but after a few bites of real food, it was hard to get him to stop. The past month he's been able to eat tiny amounts of food, but it had to be pureed, and let's be honest, there's just not that much great tasting pureed food out there. He couldn't even have ice cream or shakes because they melt down to a thin liquid which was totally off limits. But as we watched him scarf down two scoops of Chocolate Factory butter pecan, we shouted, "Slow down, Pops! If you gain any weight we won't be able to transfer you!" That could be a problem....he's lost about 40 pounds since the accident, so if he gains it back, lifting him will be tougher! But it's fun to see how happy he is eating again. My favorite was when I set the ice cream in front of him. His eyes widened, his mouth gaped, and he said, "Ohhhhhhhhhh, quick, strap on my spoon." He slammed that butter pecan like it was going out of style. God love him.

There's one more story to tell. It certainly falls into the "grosser than gross" category, but it's just screaming to be published. It involves mom and a bottle of urine. That's right folks, a big ol' bottle of urine. You see, dad has a permanent catheter for going to the bathroom...he's a quad, it comes with the territory. Sometimes mom has to hold his urine for 24 hours to be tested at the hospital. To do this, she simply empties his urine bag into a container and drops it off at Froedtert, no big deal. Now, mom has a favorite drink...some kind of protein soy drink that comes in a pretty purple bottle...and for reasons unknown, she sometimes keeps these pretty purple bottles in the car to use as urine storage on those days when they're running errands and she needs to empty his urine on the go, a traveling pee portal, if you will. So here's how the story goes...they're out and about at therapy all day and on the way home they stopped at Genesis where I happened to be working. Mom grabbed her supposed 'protein soy drink' and headed inside with dad. About 10 minutes later as I sat at the computer with dad, we suddenly heard mom scream, then gag, then scream some more. She then came running down the hall screaming, then gagging, then furiously waving her tongue from side to side while thrashing about, then screaming and finally gagging some more. We had no idea what had happened until she held up her pretty purple bottle of supposed 'protein soy drink' and screamed, "NO! NO! This is NOT my drink!!!! Uggggghhhhhh!!!!" She looked at dad. "I just drank your URINE!!!!!" As she continued her scream/gag/thrash/gag sequence, it suddenly all made sense. And boy, were we grossed out. And why wouldn't we be. Mom had just taken a swig of dad's own urine. Not just urine, but day-old urine that had been fermenting in the car. I mean, it's bad enough that she drank pee, but it wasn't even fresh pee. Is that not the most disgusting slash hilarious thing you've heard all day? It still makes me laugh. Out loud even. In fact, I'm laughing out loud right now. I hope you are too.

What's the moral of the story, kids? ALWAYS LABEL YOUR URINE STORAGE CONTAINERS. In fact, don't ever keep urine in the same pretty purple bottle that your favorite soy drink comes it. I mean, it's just basic street smarts, people. Needless to say, mom learned her lesson...we hope.

Overall, Pops is doing fabulous. Mom as well. As I watched dad enjoy more ice cream at the Kiltie tonight, I couldn't help but thank God for little (and big) miracles. There is still healing going on, even six months later. We are all praising God....well, mom maybe a little less since she now has to cook meals, do dishes, not to mention the drama dad's eating will bring to the B-Team...but heh, it's all good. I continue to be amazed at God...his wisdom, his timing, his uncanny ability to turn pain into beauty. Why do we doubt? He's got a tight hold of us and He's not letting go. We're in good hands. Urine good hands, too. Choose joy!

To God be the glory, great things he has done.

Amazing Grace

Well, we've heard from Pops (yahoo!), but I've also been bugging mom to write a post. She's totally computer-illiterate but tonight she finally handed me a hard copy....so here are a few words, er...make that 'many words' from mom:

As I reflect on these past six months, I am amazed at how our Heavenly Father has provided-how He has changed me...and how settled and at peace we both are in our new life together. I have experienced so many different stages-I remember early on, "explaining" to God that I simply would not make a very good caregiver...I'm much too selfish and independent-loving to travel, being alone, and definitely lacking in nursing skills. Just in case He didn't understand me, I remember emotionally kicking and screaming like a child-fighting what He expected of me. I remember being mad at both Pat and God...I felt cornered, I felt trapped-never to be 'free' again.

For some strange reason, God didn't change things because I thought He should...I'm so thankful I serve a never-changing master, a Heavenly Father that loves me more than I could ever imagine-and who knows me better than I know myself.

As the days turned into weeks and the weeks turned into months...I was broken, I let go, I accepted becoming more dependent on Him-feeling more settled and at peace than I ever have in my life. Letting go of my life...actually gave me life. Believe it or not, I'm even 'free-er'...yes, free to accept, free to enjoy, free to experience what God has done in my life and heart and how He has shown me what He made me for-this very special walk, a walk that few are privileged to walk-a walk with Him leading every step with people everywhere praying...fervently praying for Pat and our little family...who could ask for more.

For you see, I am a 24/7 - actually a 22/7 caregiver (with 2 hours of nursing care) and I'm not even half bad at it! Amazingly, it's probably the most rewarding thing I've ever done in this life of mine...a life that I too often spent fighting for 'my' time. Now, with very little 'my' time, I've never been happier. "Happy" has a different definition than it used to- just like "fun" and "life"-it's better, fuller, and lots more meaningful. There's a peace in my soul, a sense of satisfaction-a total reassurance that I'm doing what I was meant to do...what I was created to do- a caregiver and advocate for my husband of almost 35 years...who woulda thought.

Those of you who know me well, know this is truly a miracle of God above! It just isn't me! Life is so much simpler-quieter, gentler, easier. When hubby is a quad, you don't have to be on time for anything! And though it may take 2 hours to get Bohr ready in the morning, I can be ready in 20 minutes! How things have changed...

After about 3 months (sometime in March) I was given a card at the hospital that stated "We were not created for pleasure, we were created for joy". I thought to myself, "What is that? What does that mean?" For some reason, I couldn't get that saying out of my mind- joy and pleasure, pleasure and joy...what's the difference? It wasn't till we arrived home and my "new career" started that I fully experienced joy. Believe it or not, there is a difference-and it comes when you least expect it, when you're not even looking for it...especially when you're not looking for it.

Our life before was filled with loads of pleasure, but not much joy-some of you know what I mean. I pray that the rest of you will be able to experience joy in your life-in one way or another. I'm so thankful, again, that early on my Heavenly Father didn't change my path as I thought He should. He was well aware of what I was capable of and who I would become through all of this 'life change'...different, but better. Choosing joy in all circumstances-being settled and at total peace knowing what I was created for...and loving it. Accepting and fulfilled in a life I could never have imagined living.

We laugh more-and look at each other more, I mean really look at each other. Pat thanks me for all I do for Him-I thank him (and God) for giving me the opportunity to do this caregiving thing-I'm blown away by my new heart-my nursing skills and the fact that I'm finally the 'captain' of a team...even if it is the Bowel Team! And ya know what...I'm a darn good B-Team captain!

At the end of a day, I have a sense of satisfaction and an appreciation for my life that I've never experienced before. We've shared moments with each other when we've actually admitted that we "wouldn't want to go back to our life of pleasure", for this is better...very different, but better.

Throughout Pat's hospital stay, I always looked back on the prayer we prayed the morning of his accident-remembering the 'stirring' I felt from my Heavenly Father...to pray that our family would glorify God this last Christmas. And I remember arriving home from the hospital just two days after the accident and the kids saying, "Hey mom, we started a blog". "What's a blog?" I said. (I don't even know how to email.) Then I watched in amazement as God unfolded His promise to me -to us-as He was glorified through this little family He created...through this thing called a 'blog'.

I am forever humbled by the kindness of everyone, your generosity leaves me speechless-your prayers forever cherished. I (we) felt your prayers, then and now. We have a peace that surpasses all understanding...another of God's promises fulfilled.

We are excited about what our future holds- Pat will finally retire! We're hoping to spend winters in Arizona where we bought a little condo last year (from a woman in a wheelchair) ...God knew! And He knows where we're headed. We rest in His plan for us...and we anticipate a fulfilling life-a life where He will use us now more than ever.

To God be the glory, and thank you, thank you, thank you.

In His precious love,
Jean

Thank You, Thank You, Thank You

Hello, this is Pat. It's been a long time coming, and it's time to say thank you. I want to thank everyone that prayed and brought food and gifts (a special thank you to "me" who so generously and anonymously keeps our gas tank full...who are you???) And thank you to those that have commented on this blog. The encouragement you guys gave me sustained me through the hardest times. Whenever I read the blog comments I always start crying...knowing so many were praying was overwhelming. I know your prayers worked. I felt their power, I really did. Every morning when I woke up and realized where I was, I said thank you Lord for another day. Your prayers were tremendous support and encouragement. I don't know how you'd make it through something like this without faith and family.

During my nine hours of dialysis a week, I've decided to use that time to pray for all of you that prayed for me and it brings me great peace. God is good. I would ask for continued prayer for my wife who has been my greatest source of strength. She came to the hospital practically every single day, even when I told her it wasn't necessary. It was always so good to see her. I'm a lot to take care of...a full time job...and she's never complained. Pray she never has to...between feedings, meds, dressing, carting me around, and the bowel program (referred to as 'quality time' by the Froedtert nurses). Jean has been forced to become a caregiving nurse and she's done it in style...a real trooper. She absolutely amazes me. You can also pray for continued healing for me as I have a lot of nerve pain in my left arm, which isn't necessarily a bad thing since it might mean there is healing and the nerves may reconnect which would mean more use of my left arm. You can also pray that my kidneys continue to regain function to I could reduce or get off of dialysis. Believe it or not, I'm still trying to pass a swallow test. By now I'm so used to having my meals squirted into me through a tube that I really don't miss eating that much. And Jean doesn't mind the tube because it means she doesn't have to cook! So I'm not sure I want to pass the swallow test...we'll see....leave it up to God, He knows best.

This blog thing is amazing. So many people have come up to me and said, "You don't know me, but I've been praying for you and following the blog daily." It's quite incredible. My kids decided to start it as a means to keep people up to date with my injury, but thanks to my daughter Amy it has turned out to be a life-changing blessing to more people than I can imagine. Thank you Amy.

I want you all to know that I'm doing well. I won't say that there haven't been some down days, but I never really got angry. The nurses even commented that I never got angry. And that's, I believe, due to your prayers and God's mercy. I'm getting over waking up with my mind thinking I'm normal and then realizing I'm a quad. Every day is easier. And I've talked to a number of quads that have said it only gets better. So I do what my daughter Amy tells me...choose joy, Pops. So that's what I do...I make a choice to rejoice.

And there are some advantages to being a quad. I don't have to help anybody move, or lift heavy objects, and I do get perks from Froedtert like Brewers tickets and pit passes to this year's Milwaukee Mile. I was within spitting distance of Danika Patrick. And, of course, the rock star parking is nice.

God gave me 56 wonderful years upright and active, so now I'll be a spectator and an observer. I'm already sleeping better, and I'm not in such a hurry to keep busy. So it's not all bad. I used to pray in a rush on the way to work...always in a hurry, never enough time. Now, I pray with no hurry, no rush, I talk to God like he's my friend. I ask Him why, and He hasn't told me yet. And right now I don't care. I will see Him in heaven, whole again for eternity, and that's what matters.

I hope that we have glorified God through our family. Nothing would make me more joyful. Well, I guess this is the end of this part of the story. If I start walking, we'll let you know. Thank you again from the very bottom of my heart. I love all of you and will continue to pray. God is good. Amen.