Month: September 2015

Brothers reunited

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Danny arrived safely last night and Jan (and the rest of us) was so happy to see him. All the creatures had been swimming in the canal, and smothered him with wet hugs and kisses.

Jan was as adorable as ever yesterday. Even though his communication is drastically strained, his sense of humor continues to show through in little ways. We put him in the wheelchair and took him for a walk.

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He loves to be outside. The walk wore him out even though he enjoyed it, and we got him back in Daddies comfy chair and he rested beautifully.

Our sweet Momma loves spiders. Bernadine stopped by the pet store and brought her back a wonderful surprise.

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Mommy is in love. She is now the proud mother of a bouncing baby pink toed tarantula. She has cuddled her and kissed her and made her a beautiful home.

Today is a new day and Jan is doing well. He is not in pain and sleeps alot. Trisha, our Angel hospice nurse will be stopping by today, so we’ll see what she thinks. We are so grateful for every moment with Jan. Every breath he takes is a precious gift. we are so blessed.

Therapy

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So how does an African family relieve themselves of a bunch of stress? You play rugby in a flooded yard…

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Bernadine and I heard the creatures splashing around outside. We had all ready showered up and dressed for the day and stepped outside to watch. It was clear to both of us that the Mamma’s needed to step in..so we did, clothes and all. We had so much fun tackling and drowning the kids, and having them tackle us. All of us laughed so hard, froze our dairy airs off and exhausted ourselves.

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We sat in the sun looking like drowned rats afterward and discussed our epic tackles.

Jeremy started this whole water adventure with the creatures by breaking out a board and flying across the water.

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Afterward all the creatures picked up some tubes at the tires store and floated in the canal.

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A got a photo of the whole group!

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We had a good day with Jan. Hospice came by and helped Jan shower and then walked him out to sit in the living room for a while. He was talkative in his slow beautiful way and Trisha the hospice nurse chatted with him and took care of him for a while. I have been sleeping with Jan and our nights are spent holding hands.

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He loves to gather the sheet and blanket up by his cheek. I kiss his face periodically through the night and he just keeps sleeping. He takes 3 breaths then no more for about 8 or 9 seconds, then breaths again. It’s the longest 9 seconds of my life.

Rachel and Justin brought their sweet angels over today, and we all enjoyed cuddling them.

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The kids loved time with Jan while he was up, and his friends, San and Ron, stopped for a visit.

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Danny started his trip back here, and will be arriving at about 6pm tonight. It’s going to be so wonderful to have his support here. Jan has missed him, and so have we.

We have not started Jan on morphine yet, because he perked up and has been able to swallow is pain pills. Trisha has been such an amazing support and endless fountain of knowledge and we travel this road with Jan.

I have come to love his friends so much. They are my friends too now, and I will love them like he did.

I am so grateful for a new day, added strength and overwhelming love and support. There is so much goodness in this world.

Tears

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Today has been difficult. When Jan woke up this morning I was hoping he would have improved after a good nights rest, but he had grown weaker, his speech more slurred, and his ability to swallow lessened. I gave him his morning meds and several of our friends stopped by for one last hug. Bernadine took all the creatures up to SLC so Jan could keep resting and we followed a little while later.

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As the day progressed Jan was able to communicate less and less and when I went to give him his 1pm pain meds he could not swallow them.

We put him in the wheel chair and walked around Temple Square with him… A place our family walked together in December of 1983.

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Lance and Aurelie and their amazing sons were with us the entire time, as well as my sweet nephews and niece. The muscle men lifted Jan in and out of the car and wheel chair and everyone was so loving and thoughtful. Soon after we got on the road, i was driving and Jan choked and threw up, and went to try open the car door. I pulled to the side and ran around to him, and mommy and I helped him. Lance and Aurelie were back again to help too. We got him settled and comfortable, and got back on the road, and Gary rode with us in case Jan had further problems.

As I drove, Jan reached for my hand, studied it for a moment and then held it tight.

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I cried for almost the entire 3 hour drive home as I thought of Jan and I running through the veld, bike riding and playing marbles. We have loved each other so much for so long, so unconditionally. We have felt each others pain and joy, protected each other and laughed till our sides hurt. This is my brother. My best friend. We wanted to die together so we were never apart. I looked over at him and could not comprehend life without him.

Since he is no longer able to swallow and can’t eat or drink, his blood sugar is dangerously low. He is lethargic. I spoke with our hospice nurse and she said the time has come to start giving him morphine. I know from working hospice for 5 years that that means he will be leaving us within the next few days. I will be giving him the medication (morphine) that will help him relax and comfortably pass on. The person whose life I have treasured more than my own life, is who I must help transition on to his next.

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My sweet brother, I love you so much.

What next!

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Planned schedule for yesterday:

leave for Utah no later than 7am                                                                                                                                                  drive to SLC airport and surprise Lauren by picking her boyfriend up at 10:15am                                                                   attend the wedding luncheon at 1pm                                                                                                                                    wedding 3pm                                                                                                                                                                             reception 5pm

What actually happened…..this is no exaggeration….

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I woke at 5:30am after 2 hours of sleep and showered up. Mommy had worked on cake stuff till 2am, then spent a couple hours in the ER because of cutting her finger. She got about an hour of sleep. I then packed all Jan’s meds and the things I needed and loaded it in the car. Woke Jan up to have him get showered and found him to be unable to move his legs much at all. We got him into the bathroom where we have Daddies shower chair from when he was ill. I had to hold him up so he could brush his teeth and then we dressed him and got him to the car. Bernadine had arrived and was a great help with it all. We left by 7am and after driving for about 2 1/2 hours at 80 mph, the truck suddenly jerked hard to the right. It was a bit disconcerting but we continued on just to have it happen again a couple minutes later. It pulled so hard that I feared we would shoot off the side of the road and flip. I stopped and looked underneath to find the front wheel smoking in the general area of the rotor. After a few minutes we set out again, and I was in the far right lane, and after 10 more minutes the truck suddenly shot to the left and the steering was locked. We shot across two lanes of crazy Utah highway traffic and I just knew I was about to roll the truck and/or get hit or hit someone. The concrete construction barrier was approaching rapidly and right at the last minute my hard turning to the right sent us back across traffic. I white knuckled the steering wheel in anticipation and all seemed well. After another couple miles, the front right of the truck sunk and screeched and the entire tire flew and bounced off into the grass and trees on the side of the road. I tried to pump the brakes but there were none, so I held tight and tried to steer to as close to the side of the road as possible. We slid for over 100 yards on nothing but a rotor, and finally came to a stop on the road side. I looked in the rear view mirror and saw a trucker running toward us with a fire extinguisher in hand. I jumped out to asses the situation to find this.

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Jan stepped out of the truck to check things out as well, and found that his legs were not working. I caught him so he didn’t fall, and it took 3 of us to get him back inside. After getting him settled I looked at his face and noticed the right side of his face drooping. His eye and mouth were drooping considerably. I did the stroke test on him and it was obvious that he had had a stroke. So there I was, with a messed up truck, a brother who’d had a stroke and Ezra to pick up at the airport in a short while.

Three of the kids went searching in the bushes 100 yards back for the tire but couldn’t find it and a state trooper stopped to check on them. I gave Jan asprin and powerade to drink and pulled out my AAA card. The trooper was so sweet and called AAA for me, and shook his head while looking at the car, saying that he can’t believe we didn’t roll.

Eventually we sorted out the car situation, our hospice nurse, Trisha helped me over the phone, and we left in my sisters car for the airport while her, Gary and the kids stayed to sort out everything else. They were such a blessing. The trooper was an Angel. He helped load the wheelchair onto the top of Bernadine’s suburban.

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I had called our friend, Lance, to ask advice on the truck, and he sent his sister and her husband to pick everyone up. He also said we could use his personal vehicle to get back to Idaho. What amazing friends we have.

Bernadine sent me pictures of the trooper loading kids in his patrol car to take to a nearby Flying J. They thought it was the coolest thing! I’m concerned they may all commit crime at this point just to purposefully get caught to have another ride!

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We made it to the airport 45 minutes late and Lauren was SO surprised. She jumped out the car and ran to Ezra, who was instantly in tears when he saw her.

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What a beautiful, sweet couple they are. I know Ezra well from when we lived in Hawaii, and he is one of the finest people I know, from one of the most amazing families I know.

Jan was really out of it at this point. He could hardly speak, his tongue seemed thick and he wasn’t making much sense. He couldn’t keep his eyes open and mumbled softly. I didn’t take him to a hospital because he is on Hospice and when he was well, had requested that we let nature take it’s course. He has a DNR order in place. We made it to the luncheon and with help from friends got Jan out the car and into the wheelchair. He could not keep his head up, so we took him in to the bridal chambers where he slept on the couch.

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When it was time for the luncheon, we brought him out and some of his biking friends had arrived to give him hugs and kisses. He used to ride with a group called BACA. Bikers against child abuse. The people in it are such sweet, big hearted Angels and they protect and support abused children.

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I kept medicating Jan with pain and nausea pills according to our schedule through the afternoon, and he nodded in and out of sleep, and was incoherent much of the time. I just wanted to take him in my arms and hold him close.

The wedding was beautiful.

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Jared and his bride looked stunning.

The wedding cake turned out beautifully.

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Many people cried when they saw Jan, and wanted to talk to him, but he had difficulty responding, and after a while we decided it time to get him to the hotel. Once again with help from our wonderful friends, we got him up, undressed and in to bed. He was fast asleep before his head hit the pillow.

A couple friends stopped by in the evening to kiss his beautiful bald head, and at one point his friend Mike took him for a wheel chair ride down the hallway.

Our wonderful friends, the Sage family, were here to support and assist us the entire time. They ran and got food for all the kids and stayed and visited while kids played down in the pool. They were here to hug and console, to feed, to aid in transportation, and anything else at all that was needed. We are so grateful for them and love them so much. Jan has made some amazing friends over the years, and I am honored to call them all my friends too. Jay and his son also stopped and gave us hugs that were so comforting. We are such a blessed family.

At the close of day, I lay in my bed and listened to Jan’s snoring, and it was music to my ears. Even through the night when I listened it was comforting to know that that meant he was still alive.

I have to add that I know without doubt that my sweet Dad was there in the truck helping me stay on the road and keep from rolling. With my bad rotator cuff and damaged wrist, there is no way I could have had the strength it took to keep us on the road. He was there at the wheel with me. I felt him. He saved our lives.

Danny was a wonderful support too. He called the tow truck company and arranged for the truck to be taken in and looked at, and is handling what ever needs to be done. He talked to me on the phone and offered comfort and love and he emailed the company he is flying this trip for, and asked that they find a pilot to take his place. He knows it is time to come be with his brother.

I’m so grateful for tender mercies. For family and friends. We could not have gotten through the day with out you. I began writing all this last night  but fell asleep, and as I write now, Jan is still fast asleep. It’s going to be a long day for him, but we will get him home and comfortable, and along with our hospice angels, will continue to keep him comfortable.

Wow. What an adventure!

Lost

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Tonight as I write I can barely see the screen through tear filled swollen eyes, and I feel lost. Lost like a buoy adrift in a large open ocean, where I have forgotten my purpose and simply exist. That anchor to which I have been tied for so long still lays where it always has, but I am the weak one.

My sweet brother is so physically weak tonight. I helped him to his bed as he leaned on me for support, and with the other hand grabbed a hold of anything solid. He was shaking and pale, and breathing shallow. And then he asked that I bring him a plastic container from the chest of drawers and to call Lauren in to him. She came and sat by his side and he gave her a gift, and when he couldn’t hold himself up in a sitting position any longer I lay him down, his head on my arm, and he continued to show her some little things in his hands. A beautiful and meaningful exchange between father and daughter.

What is it that you or I will be holding precious as we begin our journey’s end, and who would you want to share it with? Those things…that stuff that seems so valuable now will mean nothing then. The anger felt and grudges held will be emotion, energy and time that was wasted, and we will wish we had used it instead for ‘I love you’s” and ‘how can help you.’

Jan hardly ate today as everything made him nauseous, including the smell of food. Fruit salad seems to be all he can tolerate. He wears 2 Fentanyl patches for pain, and every 4 hours I give him hydrocodone and ibuprofen, and as long as I can get that into him his pain stays at bay. This evening our Hospice Angel nurse had a different nausea med delivered for him to try.

Tomorrow morning I will load him in the car, along with the rest of the family, and we will drive to Utah for his son’s wedding. Their plan was to marry in December, but they changed plans so Jan can be there. We have spent all day making flowers from fondant for the wedding cake.

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My entire focus will continue to be to take care of all Jan’s needs. I will keep him comfortable, catch him when he falls, and kiss his head. I will tell him how much I love him, and I will comfort our beautiful mother, who has been tried beyond what many could not endure.

Be good to yourself. Be good to those around you. Love unconditionally and completely, and forgive. Notice the sunset, lay on the grass and admire the blueness of the sky as you breath deep the fresh air into your healthy lungs. Feel gratitude and express it. After all, what else matters.

Friendship

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This morning Lauren and I went into town early for a doctor appointment and errands. Bernadine and I were advised to be seen by a Dermatologist since Jan has melanoma, and I was given a clean bill of health. We got mommy’s windshield chips fixed and ran a bunch of other errands, all while chatting up a storm about all sorts of things. Lauren is such a wonderful niece. A confident, smart, insightful free spirit that doesn’t have a mean bone in her body. I loved my alone time with her and look forward to more of it.

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My handsome brother had a bit of a frustrating day today. He felt added pressure in his head, bad headaches and lots of nausea. His mind was foggy which is frustrating for him, and he seems to get cold (which is new), and then hot all of a sudden.

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Danny went downhill skiing in Dubai this afternoon. There is a ski hill in the mall and he used some muscles that hadn’t been used in a while, but had a blast. He is so anxious to get back to spend time with his brother.

This evening we all walked down to the cemetery so Lauren could see Daddy’s grave. The sky was turning a rich blue with golden and orange edging.

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On the way back we stopped to admire the beautiful horses in a nearby field. They were so friendly and loved the hand fulls of green goodness everyone was picking for them.

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The creatures are doing so well in Home school. They have received grades back on two of the three exams they’ve taken thus far and are doing splendidly. I love discussing what they are learning with them.

Another day has come to a close. I am so grateful for support from wonderful friends. I got to spend time with one of my dearest friends, ZoAnn, today. She is so compassionate and patient with me, offering reassurance and the unconditional love that a friendship like ours brings. It is these relationships that make all the difference in the world. I hope to be the kind of friend to all, that she is to me.

Back to Utah

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We woke up and hit the road by 6:30 this morning, to travel back down to Utah. Jude, Aidan and Mycah are going to spend a few days with our friends in Mona, and Jan and I went to my wrist appointment at University of Utah. Jan is so sweet, he insisted on going with me to show support because he loves me so much. I tried to convince him that I know he is there for me and that I’d be just fine, but he really wanted to come. On the way down I held his hand as he slept for a while. Have I mentioned that I love him so much?!

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It was so beautiful watching our surroundings awaken to the new day. A soft mist hung over meandering streams and low fields where cows stood grazing, all facing the rising sun. The sky was clear and crisp and a peaceful silence filled the air, allowing nature to wake and stretch before beginning the day. I loved being a part of it. It reminded me of waking early and standing on the bow of our home, watching the world wake around me over the water and in nearby rain forests.

I stopped at a gas station, and while filling the tank, saw this sign posted:

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“Discharge Static”…I’d never seen it before. Is that really a thing? That you can start a fire from static electricity?

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We tried another flavor of the Lays weird flavored chips, and so far out of the Gyro, Reuben and this flavor, this is probably the better of the 3, but that is still not saying much. The Truffle Fries left us wanting, kind of like you’re on the verge of something good but it just never quite gets there. Try them and see what you think.

My appointment went well at University of Utah Hospital. The Doc took one look at my x-ray and knew exactly what he was dealing with – which is different to what I’ve experienced thus far. He said my lunate bone is dead and fragmenting and needs to be removed and that I really have no other choice. This will leave a gap in the middle of my wrist that the bone above it will want to migrate down into, so after removing the lunate he would fuse the Capitate and Scaphoid to give my hand strength.

After surgery I’ll be bandaged up for a little over a week then in a cast for 6 weeks. It’s going to put a major crap in my style. How’s a girl supposed to scuba dive or ride a Harley with a cast – carefully I guess. I took a saw to my last cast, and I guess I can do the same with this one. I’m supposed to be operated on on October 21st, but will see if I can get it done sooner.

Danny sent me photos of his hotel in Dubai today.

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It’s the tallest hotel in the world and he is on the 65th floor. The gentleman he is flying, asked if he would be willing to stay longer and he agreed to it, so instead of being back by Saturday or Sunday, we are looking at a couple weeks from now.

Jan had less headaches and pressure today, although I am keeping him on hydrocodone and ibuprofen, but he had more dizziness and fogginess in his head. He feels pain below the tumors that are in his armpit as well. I watched his blood sugar closely today so that he didn’t have a rapid drop like yesterday, and feel like we did really well in keeping it controlled. Jan is a great travel companion. At times when I thought he was asleep, if there was a sudden turn or dip in the road he’d open his eyes wide, turn and look at me and yell, ‘whoa brudda!’ He is such a funny guy. I am grateful for another day of life with him. He fills me to overflowing with gratitude and love.