Thursday, August 18, 2016

The Captain gets to dance!!

August 1, 2016

Jo was finally going to get to see his new internist today. Jo had not been readied for his doctor appointment by the time I had gotten to the facility. He was still in a shirt we had put him in 3 days prior. I was frustrated because I had talked to the nurse and CNA the night before to go over giving Jo a shower and having him ready in the morning. I even asked if I should come early to do it myself and was told that the CNA’s would handle it. I was kind of panicking when the transporter came into Jo’s room to get him because he wasn’t ready and I did not want him to go to the doctor in his current state. The transporter was such a kind, helpful and tender man. He helped me get Jo into his wheelchair and that made it easier for me to change his shirt. Then he helped me wheel Jo into his bathroom so I could wash his face and get him started on brushing his teeth. As I was rushing around, the transporter would say in a peaceful tone, “It’s okay, we’ve got plenty of time”, even though I knew we only had minutes to spare. He grabbed Jo’s tennis shoes and he put one on while I put the other one on and we were out the door. I had driven over to Jo’s facility and then was able to ride with Jo in his transport van. It’s a pretty slick vehicle. A wheelchair elevator is unfolded from a side door towards the back of the van and then the platform is lowered to the ground. Jo is loaded onto the platform in his wheelchair, backwards and then a belt is wrapped around the chair to keep it from rolling off. When the platform reaches the level of the inside of the van, Jo is rolled to a forward position and straps are hooked to four areas of his chair and then one seatbelt type strap is pulled around the arm rests of his chair. The transporter talked to Jo and I the entire time he worked to secure Jo in the van. He was very concerned about keeping Jo at a cooler temperature and explained that the van could get quite warm inside in the middle of the day. He had a radio station on that played music from my high school days. I was having a trip down memory lane of my high school friends and slow dances to “Stairway to Heaven”, as we drove down the street to the doctor’s office. Jo was calm and happy to be on a new adventure.

We didn’t wait long in the waiting room, which is always a gigantic plus for me. I was feeling frazzled and uncertain of how Jo was going to tolerate the whole ordeal. The nurse was kind and entered Jo’s info into the computer inside the exam room. As with most people, she didn’t know that Jo was perfectly capable of answering his own questions, for the most part. He just doesn’t know the extent of what he has been through or the procedures he has endured very well yet. As she would ask the questions, I referred to Jo for the answer and he would answer. She appeared pleased.

Jo’s doctor was a kind brilliant. He didn’t take himself too seriously. He was interested in what Jo had to say and as he went down Jo’s list of procedures, meds, and current issues he would say, “I think that will resolve with time.” He checked Jo from top to bottom. He asked why Jo had his PICC line still. I had to explain that it was still up in the air as to how Jo was going to tolerate food, manage his migraines, maintain a high caloric intake and be able to take meds when he is nauseated. I explained that Jo had been doing really well since having his skull back on, however he had not been rolled yet and I was just too nervous about taking it out. Jo piped up and said he didn’t want it taken out until he knew he would never have to have it put back in. He said he hated that procedure. The doctor wanted to try a high blood pressure medication to manage Jo’s migraines but said if Jo experienced any side effects to the med we were to discontinue its use and we would try another. When everything was said and done I felt as though I was floating out of the office at the positive response of the doctor. What a terrific guy!

I decided that I needed to make some aprons for those that would help with the food tables at Savannah’s wedding. I looked on Pinterest for patterns for a 1940’s style. I found many pictures, but no pattern. I spent the next three hours making a pattern and prototype of my own. I went to my favorite fabric store, Ace Hardware, and chose the perfect fabrics and went to work making the six aprons. (Thank you, Gina for being my model of the end result. I was quite pleased!)


This evening as we were about to load Jonah up and take him back to the facility I was feeling so stressed, tired, and even a little sick about all I needed to do for the upcoming wedding and so many other things, I felt I needed to have a blessing to help me get through the next several days. The thought then came to me to ask Jo if he would help give the blessing. He said, “Sure”. I then knelt at his feet, as he was seated on the couch. He placed his hands on my head and with perfect diction called me by name, “Heather Lee Tuttle . . .” and then anointed my head with oil. Tom then sealed that anointing and gave me a blessing. It was a very special experience for all of us.

August 2, 2016

First thing this morning I went to Costco to order 16 all white bouquets of flowers for the table centerpieces for the wedding reception. I was so excited when I had first seen these bouquets several weeks ago. They are big and beautiful, they smell wonderful, and are only $15 a piece. I had wanted Savannah to use the flowers from these bouquets for all of the flowers for the wedding instead of using a florist, however I didn’t win that battle. Ordering was such an easy process and I was assured they would be ready to pick up this Thursday morning.  I have all of the pieces of the decorations gathered together and yet I am not exactly sure how I am going to place it all the day of the wedding. We are not allowed into the building where we are having the reception until 8:00 AM. We have to be at the temple and ready to go by 10:40 AM. The wedding will last about an hour. There will be pictures right after that. There is a luncheon at 1:00 PM. After the luncheon I plan on running home, changing my clothes and beating it over to the reception hall and decorating. I am hoping to be able to get the foundation of the decorating started before the wedding. I am using some furniture, and a gazebo (which Tom hasn’t even had time to start building yet!!!) Oh my word, my head swims at the thought of all that I need to do while somehow managing and caring for Jonah. He is so looking forward to attending all of the functions. He has to be dressed four different times. He needs to be fed. He needs to have naps and he needs to be transported to the various venues and to the bathroom on demand.

It has been pretty stormy these last few days. We have been having our typical summer thunderstorms. This evening it was particularly spectacular. The rain came down in sheets of water. The gutters filled quickly, turning the edges of the streets into rivers. The temperature was warm and enticed the girls to run out into the yard, becoming drenched in a matter of seconds. Jo was home visiting so I lowered all of the pillows on the back of the couch so Jo could see out the front window to enjoy the show. I was trying to finish sewing the aprons, and wasn’t paying attention to where Tom and the girls were playing. Pretty soon I heard Jo ask where dad was. I looked outside and couldn’t see anyone, so Jo began trying to call the girls and Tom. Soon word came back to us that Tom was around the corner at Austin’s, playing with the girls and the grandbabies in the “gutter river” outside their home. Tom was sitting in the gutter damming the water to make the pools of water bigger for the kids to play in. Jo was laughing as the pictures of Tom were reaching Jo’s phone. This was a fun break from life!! God is so good!!

One of our sweet former bishops and his darling wife from the ward we lived in as Jo prepared for and then left on his mission came to visit us. They were coming to give Savannah her wedding gift, as they were not going to be able to attend her wedding due to a prior commitment. It was so fun to see their smiling faces as we opened the door. This bishop is now a counselor in the young singles college ward and shared with us that Jo had attended his ward earlier in the day of Jo’s accident. He said that he had been drawn to watch Jo during one portion of the meeting and was impressed with the thought that Jo was sincere in his worship and commitment to the ordinance he was partaking in at that moment. After the meeting he said he had a short conversation with Jo and was thankful to have had that interaction with him, especially when he had received the news of Jo’s accident. Jo was home with us visiting for the evening and was lying on the couch taking in all of the conversations. Each of them took an opportunity to speak to Jo and express their love for him.
Savannah had a special relationship with this bishop’s wife as she had felt taken care of, loved, and championed by this woman during a time when she was overcoming some pretty difficult challenges. Savannah was excited to see her.

Soon it was time to run Jo back to the facility. We strapped him into the van and had a fun ride back with the windows down, feeling the cooled wet air blow in our faces as we watched nature’s “fireworks” light up the Saint George sky all around us. It’s been a wonderful night!

August 3, 2016

Jo text me this morning and said, “I rolled mom, and I it didn’t make me sick!!!” I can’t even tell you what those words have done for me!!! This was the final test to see if Jo’s vertigo was completely gone and it’s GONE!!!! Our neurologist’s PA had told us that having Jo’s skull back on was going to be a game changer and while I so badly wanted to believe, I was still skeptical at how big of a change it would be. Jo has not been dizzy nor thrown up since being in the ICU right after his skull surgery. This is BIG!!! This is so so BIG!!!  Later in the morning Jo sent another text that he walked 6 times across the platform with the bars!! He’s very excited. He also informed me that he was going to need his swimsuit for tomorrow, as he is going to be doing some therapy in the pool. He’s pretty happy about getting in the water.

I had to get going early this morning to make the 16 wreaths for the centerpieces on the tables at the reception for Savannah and Fred. Weeks ago as I was at my dads I noticed he had a bush in his front yard that would be a great potential for the greenery in the wreaths. I had asked my dad then if he would refrain from trimming that bush and instead let me use its trimmings for the wreaths. He was happy with the win/win. He also agreed to let me come to his house and put my wreaths together. My older girls were going to assist me. I went to Chloe’s house first to gather from her bushes and then carried the large barrel of trimmings to my dad’s to put the wreaths together. Within an hour of the project I realized we were going to make my poor father go crazy with all of the grandkids runny amuck while we crafted so we packed up the project and brought it to my patio. My next issue was where to store the wreaths so they remained cool and damp and undisturbed by children. The only place big enough and cool enough was Tom’s bishop’s office. I was able to build 7 of the wreaths by the time I had to get ready to leave to the temple to be with Savannah for the first part of her preparation for her marriage. We were in the temple about 3 hours. Jo text me right after I was out of the temple to remind me that I needed to bring his swimsuit for his therapy tomorrow. He was so excited.

Chandler had to accompany Jo to his doctor appointments this afternoon because I had to be at the temple. I was going to reschedule the appointments, however Chan offered to go to them instead.  Chan said that everything went very well at the neurologist’s office. Brilliant #1 told her he didn’t need to see Jo for a year!! I was a little taken back by this. It just seems as though he would need to see Jo a few more times because of the severity of the issues, however Jo’s care has now been turned over to several other brilliants for his care and sign-off on the numerous issues Jo has. It’s taken until now to finally understand how all this doctor stuff works. It completely makes since to have specialists, for so many reasons, but it is difficult on the family because our tendency, especially in traumatic situations, is to want to bond to one single brilliant-the one that saved your family member’s life. In Jo’s situation, it has taken a village of doctors to get Jo to the place he is now. There has been no chance of “bonding” to one single doctor to this point in his care because they have changed regularly due to the schedules set by the hospital staffing.

After the temple and the dinner afterward, I came home to make a dress for our newest granddaughter so she would match the other granddaughters’ wedding dresses. I cut it out and sewed into the early morning hours to get it done. I loved having the quiet and chaos free atmosphere to do this project. ALL OF MY SEWING IS DONE FOR THE WEDDING NOW!!!!!! Yipeeeee!!!

August 4, 2016

It was a stormy night last night and a stormy morning this morning. I so enjoyed the morning because of the rainy dark clouds. There was a peace and quiet about the morning that invigorated me and gave me a serene happiness. I was up early to run around my neighborhood for more greenery for the five remaining wreaths I had to put together. Tom had asked some of our neighbors yesterday if we could use some of their branches on the bushes in their yards. I had run over to Tom’s office to see how the other wreaths had faired and was bummed to see that the greenery I had used from my dad’s bush was not as hardy as the greenery I had used on the prototype I had made weeks ago and had started to wilt a little. I prayed a simple prayer that the wreaths would last through the reception, and that despite their wilting they would still look spectacular. Within a half hour I had cut enough branches to make the remaining wreaths and was done making them and had them placed in Tom’s office in about 3 hours.  My index finger and thumb are never going to be the same from pushing branches into the foam discs. My thumb is aching clear into my wrist.

I ran to Costco and picked up the 4 large boxes which contained the 16 bouquets and as I was about to pay I decided I should by 3 more, just in case. I dropped the boxes of flowers off at Tom’s office, following Tom’s instructions to leave him a path to his desk, and room for two other people to sit in his office, as he met with them for meetings that night. I had to run to Ace Hardware for some ribbon and was so excited to see cases of 12 count green quart size, wide mouth Mason Jars for $4.99. That’s a screaming deal, so I bought two boxes!!! I thought those would be perfect to use for smaller bouquets needed as filler décor. I was so so happy with my find!!! Next I ran to TJ Maxx to see what I could find to use instead of the crates I hadn’t been able to get to Tom’s shop to make the crates I had intended to use as the stands to hold the cupcakes and cookies on the dessert bar for the reception. I found the perfect metal baskets in various sizes and some really cool large round wood and metal platters. As I was checking out I got Jo’s text that he was done with therapy and ready to come home for the afternoon. I made my purchases and ran to pick up Jonah and some dinner for my starving family. I got home to greet family and friends who had come into town for the wedding. We were exceptionally excited and pleased that Tom’s parents were able to travel down to be here with us. This is always a miraculous event, as both of them struggle with great health issues.

One of my sweet friends showed up and asked what she could do to help. I honestly couldn’t think, so she took the bull-by-the-horns and took all of the tablecloths to iron, the 3 bags of lemons to slice and said she would be there tomorrow to help me cut the bouquets and place them in their tins for the centerpieces. I hadn’t even thought about ironing the tablecloths!!!! It’s a dang good thing she showed up!!!! My amazing friends from California, Gina and Gramma Shar, packed every decorator cake dish they had, twinkling white lights and decorator chalkboards into their little Honda Civic and drove through crazy storms and a six hour bumper to bumper traffic accident to get to my house today; a five hour drive turned to ten. Gina drove and Gramma was strategically placed in her passenger seat with decorating paraphernalia between her legs, on either side of her head, under her arms, and behind and over her head. They looked a little like the Clampetts from the Beverly Hillbillies. My daughter, Chloe, had just called me to say she needed to go find a cake stand to put Savannah’s wedding cake she was making on, when my friend Gina pulled the most PERFECT cake stand out of her car!!! I honestly could not have found anything more beautiful or perfect!!! I was AMAZED at how the Lord just KNEW, even when I wasn’t even aware of the need yet!! He is blessing me so much with so many tender mercies.

I fell into bed tonight praying to be able to sleep soundly enough that I wouldn’t awake until morning, because I knew I needed the sleep in order to have a prayer at remaining sane tomorrow and I knew that if I awoke in the night it would be impossible to go back to sleep due to my mind not being able to shut off.

August 5, 2016

I awoke today to Tom leaving at 4:30 AM to go to work and put in some hours before the wedding!!! I wanted to KILL him for abandoning me on this crazy day, but I didn’t say a word to him, instead as I heard the front door close, I started to pray as the tears burned my tired eyes. I told Heavenly Father that I didn’t even want to get out of bed and that I needed him to send angels to help me through this day. I prayed that Jonah would be well and that we would be able to meet all of his needs and desires even within the chaos of the day. I prayed that my mother and other relatives that have passed through the veil would be allowed to attend Savannah’s wedding and that we would be able to feel their presence with us. I prayed for mental and physical energy to do all I needed to and that I would be able to feel the spirit attend us throughout this special day! I ended my prayer and pulled myself out of bed.

As I was blowing my hair dry I was checking off lists in my mind when all of a sudden my stomach stung as I realized I hadn’t purchased the items needed for a basket we give the spouse of our kids of the needed information/instruction and products necessary for them to understand how to care for them as we pass the baton of care to them. This was something I had explained to Fred so he could have his parents do the same and we would present them to Fred and Savannah at the luncheon. I would have to run to the store as soon as I was ready! I showered and was ready in record time. By the time I got to Austin’s house all of my girls were already there getting their hair done by Austin and another friend who had gotten up at the crack of dawn to get this monumental project done; six bridesmaids, the bride, four little girls and themselves done, with hair curled and pinned up, and make-up on. It was truly a stunning feat!

I had called another friend to see if he would meet me and help me gather the furniture and load and transport the flowers and wreaths and all of the other decoration paraphernalia I had been gathering for the past six months and bring it to the venue. My son-in-laws showed up to help haul things too and one went to get Jo. We had everything needed to decorate the venue ballroom transported and the tablecloths on in no time flat. I had to pull myself away to go home and dress for the wedding ceremony. Savannah and I were walking out the door to the temple, as Tom was just getting home from work, sweaty and covered in sawdust. Jo showed up at the house un-showered even though I had planned this out with Jo’s facility, so Tom was going to have to shower Jo and himself and be at the temple in time to undress and then dress them both in their white temple clothes for the ceremony. My breath left my body as I knew I could do nothing about this and so I had to just lie that at the feet of Christ and head to the temple with Savannah and her wedding dress. Whew, I was just too overwhelmed to go there.

While Jo waited in our living room for Tom to get ready, he decided that now was the perfect time to get up and walk around the room with his transfer chair, NOT his walker!!!! He hadn’t told anyone this was his plan, he just pulled himself up with the help leaning on his transfer chair and started pushing it around the living room. Those in the house were shocked and a tad scared as they watched him struggle to keep himself upright. His friend Tyler yelled out that Jo was walking and ran to his side to assist him in his struggle. Gina came running in to see what all the fuss was and then yelled out to Gramma to hurry in, “Jo is walking!” Jo was grinning from ear to ear and decided that he had better try to go around the room one more time because no one had really seen what he had done. (He has not done this ever before and he has not done it since. He had set a personal goal to be walking for Savannah’s wedding and come hell or high water, he was going to do it! He becomes greatly fatigued with a distance of a 10 foot walk and needs to sit and rest.)

Meanwhile, at the temple, time ticked away and as the moment approached for us to enter the room where Savannah and Fred would be married, we were informed that there were weddings back-to-back that day and we would be efficiently moved into the sealing room and then efficiently moved back out in time for the next wedding. I had been waiting to hear if Tom was in the temple yet as I sat with Fred’s parents in the place they direct the parents of the bride and groom to sit until we are to enter to ceremony room. We were to be walked together with Savannah and Fred to the sealing room. As we were being escorted to the ceremony room I finally received word that Tom and Jo had arrived at the temple and were dressing. I asked the worker if I could go find some of my sons-in-law to go into the dressing room and assist Jo while Tom got himself ready. Everyone had to pause in the hall and wait for me as I ran to find the boys.  The guests were brought in and seated and I listened to the workers inform each other that they were still waiting for some key family members. I then got up to look out the door of the room to see if I could see Tom and Jo. As I walked to the doorway I was taken aback at the sight before me. Jonah was being wheeled into the lower room encircled by all of the brother-in-laws and Tom. Everyone was dressed in white and Jonah had a smile that lit his entire face. It was silent and reverent and the whole entourage seemed to glow. Jonah was lifted to his feet from his wheelchair and with a brother on each side of him; he was helped up the short set of stairs ascending into the sealing room. I could not stop the tears! All of a sudden I was struck with a view of all we had been through to get to this place. I could not believe we had made it here and had received the miracles necessary to see Jonah at this place, functioning at a level no brilliant ever thought he would!! Jo was smiling and his countenance was so bright. He was brought in and sat between Austin and Chloe, in the front row. As the officiator came forward I was again struck with amazement, as this was the man I had wanted to officiate their wedding. President Jeppson has been a part of many of our family’s events over the 16 years since moving to Utah and is the dear uncle of Jon, Austin’s husband. As he began the ceremony he became emotional as he spoke to tell us that those beyond the veil were close and that heaven had orchestrated this day and everything leading to this union. These were the exact words that had just gone through my mind. It was a wonderful ceremony!

Pictures were taken around the grounds of the St. George Temple and then we were off to get ready for the luncheon. Jo said he was hungry and so I made him half a bagel to get him by until the luncheon. When we arrived at the restaurant for the luncheon we were escorted to the bottom of 9 stairs that had to be climbed to get to the room where the party was already going full speed. We asked if there was a ramp or an elevator so we could take Jo up and were told, “No”. Without skipping a beat, the brothers all surrounded Jo’s wheelchair and began to carry him up the stairs!!  Jo didn’t want to eat anything and seemed exhausted by the time lunch was over. I needed to get him home and in bed for a long rest. Gosh dang this stresses me out!!!  Zach said he would stay home and tend to Jo while I left to go decorate the hall. I left all of the instructions on the care of Jo, changed into work clothes, and took off.

When I walked into the hall many helpers and hands greeted me ready to be directed as to what to do. I could not have planned this any better. The Lord surely was providing for me!! Tom informed me that he was going to go to the shop and build the pergola . . . WHAT THE . . . SERIOUSLY????? Cuss words were flying through my mind!!! I’m so sorry Lord. Sometimes there are just no words. There was a frenzy of work and before long the hall looked magical, Cinderella magical!!! With 40 minutes until the ring ceremony, Tom pulled up with the parts to the pergola. The men all grabbed a piece and hauled it up to the third floor hall and began to assemble the parts. Within minutes the pergola was in place and we quickly threw some fresh garlands across the front edge and I ran to get changed into wedding clothes again.

The ring ceremony got off to a rough start because the groomsmen didn’t show up for a practice run through. Even though I had instructed the bridesmaids as to what to do, people in the front of the audience instructed Heather to take Jonah and his wheelchair to the opposite of the pergola than where she had placed him after pushing him down the isle. She got flustered and teary, but made the change. Everyone after followed the line-up at the pergola. As the last of the bridesmaids and groomsmen were on their way down the isle and Tom had begun to walk Savannah down the isle I ran up to the front and snuck into my seat. The man officiating was a friend of ours and only those of us in the first few rows had the opportunity to hear his inspiring words because Tom hadn’t had time to set up the microphone and sound system. It was so beautifully said, I wish everyone could have heard it, however they all sat there quietly anyway. 

For the reception, we brought the zero gravity chair so Jo could be laid back in a more comfortable position. He enjoyed the chaos of music, grandkids running and playing, and the multitude of conversations going on all around him. He started dancing with his hands and arms while he was still in his chair, however he wasn’t satisfied with that and he soon wanted to be brought out to the floor to dance. Well, all right!! Here we go!! Austin and Chloe flanked him and walked slowly to Savannah, on the dance floor. Savannah tucked her arms under his and they began to dance in a slow circle to the music. Jonah was smiling, ear to ear as he said, “I’m so happy!!! I’m so happy for you!” There were no dry eyes!!

Soon Fred and Savannah were off for their honeymoon! Savannah was a stunning bride and Fred was a handsome groom. It was a truly beautiful, magical, and miraculous day and at the end of the night we had so many helpers, we were packed up, cleaned, and out of the hall within an hour. It was truly miraculous!!! Jo was returned to his facility and was asleep almost before we had his head rested on his pillow. He is such a trooper!!! Gosh dang, I love him!!! I worried that this long day will have taken a great toll on his ability to function over the next few days. It is in God’s hands. Jo got to do everything he wanted to do.

August 7, 2016

Chan and Mike blessed their sweet new Eliza Jo this morning. Jo was able to be in the circle with the many family members still in town from the wedding. It was glorious to witness. Michael’s ability to verbalize the impressions of the spirit while pronouncing Ellie’s name and giving her, her blessing was amazing. Her blessing was so wonderful! As the day was coming to an end and we were finishing our dinner, Tom’s dad asked if he could share some thoughts with the family. In the thirty years Tom and I have been married, I have probably heard him speak 100 words total. He does not speak very often. We were all outside in the backyard; the little kids were playing in the far corner of the yard completely unaware of the significance of what was about to take place. Several of the family members pulled out their phones and turned them to video, as grandpa stood up and walked, with his oxygen tank, to stand behind Jonah’s chair. Grandpa placed his hand on Jo’s head and was filled with emotion as he began to speak.  He began to tell us the story of his beloved brother, Byron.

A drunk driver had hit Byron’s vehicle and his spinal cord was injured. He said that his mother had sent his father to give Byron multiple priesthood blessings to heal him, which his father did. However, Byron was struggling to hang on and was getting worse and worse. He said that Byron was able to speak through a button in his trach, which had been placed to help him breath. Tom’s dad would go to the hospital often to talk and be with his brother. When Byron failed to get better, grandma Tuttle told her husband to go to church headquarters and get an apostle to come give a blessing to Byron. She had lost another son a few years prior to another drunk driver and refused to allow Byron to die, her heart just couldn’t bare it! When grandpa got to church headquarters he was sent to Harold B. Lee, the healing apostle. Harold B. Lee explained to grandpa that he held the same priesthood as himself, and he held no more special power than he to pronounce a healing blessing upon his son, which grandpa already understood, but grandma was desperate to hang on to her son. Harold B. Lee went with grandpa anyway to help give his boy a blessing. Tom’s father just 16 years old at the time and was in the room as the men and grandma entered, so he hid behind the curtain to be undetected. Elder Lee explained to grandma exactly what he had explained to grandpa and then told her that Byron wasn’t meant to be on this earth any longer. He explained that the priesthood blessings, which had been given to Byron to this point, were keeping him here but he was needed on the other side of the veil to do a work there.  With a heavy heart grandma allowed grandpa and Elder Lee to pronounce a blessing upon Byron that released him from this life and Byron was gone within a few hours.

Tom’s father then told us that Jonah’s injuries were every bit as bad, if not worse, than his brother’s injuries, however Jonah’s mission on this earth was not yet over and that he knew that Jonah had been to the other side of the veil while in his coma and had used his free agency to choose to come back and fulfill that mission. He explained to us that he has been to the other side of the veil during the times he has died and been brought back to life, and even though he has been there and experienced what he has, he is grateful for each day he awakes and is still here. (Tom’s father has died and been brought back to life several times in the last 30 years. He said he thinks everyday that that will be his last day.) As soon as these words were out, Tom’s father stopped speaking and sat down. The spirit was so palatable and his words were another confirmation of what I had been taught by the spirit myself through this journey with Jo. God is so good!

August 10, 2016

My life is slowly normalizing, to my new normal, after the events of the wedding. Jo started breathing funny when I went in to the care team meeting today. He said that his rib was hurting when he moved and breathed in deeply or sneezed. He told me that he had mentioned it to his physical therapist earlier and she suggested an x-ray. My guess is that since he doesn’t remember hitting it on anything, it is probably an issue of having one of his ribs out. I was more interested in getting him to our holistic chiropractor than having him have another x-ray. I’m going to work on this. As I conveyed these thoughts to the head therapist, he tried so hard to hide the rolling of his eyes.

After our meeting there was time before his next therapy session to steal Jonah away for lunch. I told him I had to go home to get the van because all I had was my little car. He told me that was okay and that he could ride in the little car. He was sooo intent I decided to try. He did a great job helping me get him into my low car, and it was a trick to get his wheelchair into the trunk, but we did it and were on our way to Fatty’s for a burger. I was feeling so so so stressed with him being in the front seat, however that was the only place he could fit and I worried that the point of impact was so low, so I drove as cautiously as I could.  It was warm, rainy, and dark outside and big raindrops pelted the windshield. Every once in a while we could hear loud thunder. As we drove down the road, Jo all of a sudden exclaimed, “This is fun!” I was so shocked that he had said anything I asked, “What’s fun?” He said, “This! Driving in your car!” That made my whole day!! I don’t think anything has been “fun” for him since his accident and it touched me that something so simple as driving down the road in my car was fun! 

It has been interesting to experience life with a child in a wheelchair and visible scars all over his head. People look and I watch them talk to one another about him. The other day we took Jo to one of our favorite restaurants and as some of us stood in line to order, the others took Jo to a table to wait. As we were standing in line Austin overheard a girl sitting at a table next to us tell her parents that she, “knew that kid” and that she had “gone to school with him”. She then went on to tell them that he had been in an accident and “had lost HALF of his brain, but he’s doing really good.” Austin and I just looked at each other and laughed at what goes around. As we tried to get Jo into the restaurant today we had to push Jo up the ramp near the disability parking and then across the sidewalk that ran in front of the storefronts. As we were passing a pool supply store we had to push large blown up pool toys, which the store had out on the sidewalk for display out of the way in order to keep the tires of his wheelchair from falling off of the edge of the sidewalk.  For Jo it was no big deal because he had us with him, but how frustrating and even scary for someone alone in a wheelchair trying to maneuver around the stuff. I never have thought of these things before. Everyone was in compliance of the law, I’m sure, however what a pain in the bum for the person in the wheelchair.

August 11, 2016

I got to watch Jo walk in therapy the other day. His therapist rolled his wheelchair onto one end of the wooden platform between two horizontal parallel bars that are about waist high. The wheels are then locked to keep the chair stable. The therapist comes around to the front of Jonah and places her knees against Jo’s left knee and holds it in place as she bends and reaches for the sides of his waistband to pull him up with. With the count of three she lifts as Jo pushes up to the standing position. Once vertical, Jo places his arms around the therapist’s shoulders as she continues to hold steadily to his waistband and he takes a step forward with his right foot. His left foot and leg then begins to shake up and down as he concentrates on moving it forward for the next step. The therapist uses her knee to push this knee back into a locked position to steady his leg. The therapist coaches Jo to keep his feet separated from each other because he has a tendency to move one foot over the other, which trips him. She also coaches him to take steps the length of the measured tape strips, which are adhered to the wooden platform as guides. Once at the other end of the wooden platform, an aid pushes Jo’s wheelchair forward until it is just under his bum and Jo is guided to sit. The aid then pulls the wheelchair to the beginning of the wooden platform and the routine is repeated until Jo is too tired to have control of his weakened side. The distance is about 10 feet and he has worked his way to doing the routine about 6 or 7 times a session.

On another day, Jo was hook in a harness, which is connected to a trapeze type metal frame. This frame sits over the top of a treadmill. Jo was practicing walking at a very slow speed while having some of the weight of his body supported by the harness and trapeze. He was able to walk beautifully without the extra weight. There was an aid standing behind Jo ready to help if needed. All of a sudden one of the latches on his harness disconnected. The aid had to hold Jo up and hit the emergency stop button on the treadmill to keep Jo from getting hurt. The poor therapist must have had a heart attack at that one. Needless to say, there will be no patients in the harness and trapeze until further notice.

Heather and I experienced a very scary situation tonight when we brought Jo back to his facility. It was just she and I, however we have got a system down and it has become an easy process to get Jo out of the van. Tonight though Jo wanted to try to pull himself forward in his seat and push his legs to the edge of the door. I was standing outside the door waiting as he moved. Soon it became apparent his weakened leg was stuck and when I went to the other side of the van to climb in and help from behind Jo, his bum began to slide off the seat because of his slippery basketball shorts, causing his leg to become absolutely immoveable. As his bum slid over the edge of the seat he cried out in pain and began to whimper and that absolutely scared me!!! I have NEVER heard him cry out in pain throughout this entire ordeal. I asked him what was hurt as I was trying with every bit of strength I could muster to pull him back up and onto the seat. There was just no way I could lift him and he and I were now stuck. I told him to lean back into me to take some of the pressure off of his folded and stuck leg. He told me it was his bum and my mind raced with what could possibly hurt so badly. I told Heather to run inside and grab someone to come to the car and help us. It seemed like an eternity before a young man and young woman came sauntering out of the building. The girl knew Jo and called him by name. The young man stood there and waited for instructions. All I wanted was for them to move quickly and help me relieve Jo’s pain!! Within a few minutes we were able to move Jo back onto the seat and then out of the van and into his wheelchair. He was sweating and looked a little pale. We helped him into bed and I stayed a while to see that he was really okay. Jo told me that the spot that hurt him was a spot that had healed from road rash right over his tailbone. I drew a picture of his butt and asked him to mark the spot of his pain so I would know where to look for an issue. Jo drew a horizontal line over the entire top of his buns with an emphasis on the end of his tailbone. I asked the nurse to look at the spot to ensure it hadn’t had any skin breakdown. That poor baby just breaks my heart sometimes.

August 13, 2016

Tom was the announcer for the Washington County Fair Parade this morning. He has done this for the past 5 or 6 years. Tom is an absolute natural at doing this. He should have been a radio announcer. He has the audience up and dancing, singing, yodeling and anything else he can think of for prizes. My favorite today was a 10- year-old boy that came to the microphone and sang the entire “Let It Go” song from the movie Frozen, dead serious. He was an absolute doll and he blew the mind of his father who was standing there with his mouth hanging open the entire time the boy was singing. The runner up for me was a darling girl with downs syndrome who danced the Macarena beautifully and them beamed as Tom told her she was the winner!! We had gone to get Jo early so he could attend the parade. He loved watching the people from his zero gravity chair of comfort.
At 3:00 PM I busted my buns to get Jo back to the facility for his therapy. He was there a full half hour early. I told him I was going to go run errands and I would pick him back up after he was done so he could be home for the evening. I had no sooner finished my first quick errand and I got a text from Jo that he was done. Wait . . . WHAT???!!! I text him back and questioned him as to what his therapist had accomplished. He text me back saying the therapist had come into Jo’s room and then left because Jo had told him he didn’t want to do therapy. I honestly couldn’t believe what he was saying and I slid instantly into a state of tears and full-blown, over-the-top, ridiculous frustration!!!! I had to hurry out of the store without a purchase and head home. I sent a text back telling him that was a poor choice and he sent one back saying, “Ok if you say so. I’m done. How far away are you?”  I was too pooped to deal with this crap!!! All the way home I was planning my escape from my life. I was trying to figure out where I was going to pack my bags and go. Every single thing that has been disturbing me but I had been forced to ignore due to the endless business of Jonah and Savannah’s wedding was suddenly taking over my mind. I didn’t want to be a mom anymore. I didn’t want to live in my stupid house. I didn’t want to be a wife. I didn’t want to be visible to anyone. Somewhere there had to be a safe dark space of peace and until I could figure out where that place is I skid into my driveway and slammed my van into park. I pushed the door open and and then slammed it. I stomped up the walk. I opened the front door and then slammed it as hard as I could and walked to my room and slammed that door too!!! I pushed all the pillows off my bed and laid down hoping that I would dissolve while I slept so I didn’t have to wake up. I wanted to scream, “LEAVE ME THE HELL ALONE!!! EVERYONE!!!!  I was now sobbing as I talked to the Lord. “I can’t do this anymore!! I am pooped!! I just want to go away!! My phone pinged next to me and I knew it was Jonah. I wanted to throw it through the wall. “Where are you mom?” My heart broke for him. He has no one but me right now.  I sent back a text, “I am at home. I was waiting for you by running errands but you made me upset when you didn’t go to therapy, which made me cry and now I am waiting for dad to come help me get you. The natural consequence of not doing every single therapy session is that you will not be able to walk and do things for yourself. You cannot turn your therapies away!!! I am not understanding what you are thinking.”  Jo sent a text back, “I’ll tell you in person.” That little fart!!! He knew he needed to get me back there. Even though that response made me laugh a little I was still pretty ticked off. I wanted to just be done with all of this crap. The effort it takes for me to move Jo is incredible and I was totally feeling sorry for myself, thinking, “If I am working harder than he is, than I need to back off!” For a moment I thought, I am not going to go back today. I was talking to the Lord and told him, “I don’t even have the energy to move him again today. AND I DON’T WANT TO!”

An hour later I drove over to the facility to hear Jo out. He said, the man had walked into his room and asked him if he wanted to go to the gym to work out. Jo answered honestly and said, “No, my rib hurts.” The guy then asked Jo if there was anything else he could do for him and asked if he could fill his cup with ice and water. Jo thought that would be all right. He then took Jo’s cup, put ice and water in it and left. I think that guy is a complete jerk. All he needed to do was tell Jo something like, “Let’s go to the gym and work on a few things. We’ll be careful will your rib since it is causing you some pain. We want to get you up and walking soon! Let’s take advantage of this time you have here and at least work on something.” Jo would have responded favorably to this. ROARRRRRR!!!!!! This guy just saw a ticket to be done early and get the heck outta there!

It doesn’t take much to throw me over the edge. I know I am absolutely frustrated with so many things in my life, it isn’t just Jo! I only know that the Lord knows how to succor me and lift me even when I say I have given up. Sometimes I don’t even realize He’s doing it and all of a sudden I feel like I can keep going.

August 14, 2016

Jo’s appetite has increased significantly!! He has been telling me that he is hungry, here and there, which is absolutely thrilling. I usually have to ask him if he will eat and then ask what he would like to try to eat. The portions he has consumed have increased in amount and he will generally eat three times a day instead of just once. Despite his increased appetite he has lost another 11 pounds. They tell me that the amount of calories it takes to heal and retrain his brain and learn to walk is so enormous!! He is beginning to adventure out a tiny bit on what he will try to eat; it isn’t just chicken strips now. Chandler had asked him what he would like to eat, if he could have anything he wanted and he said he would like steak and asparagus! Today Chan made the family steak, fried potatoes and baked asparagus. Jo ate 4 plates of food!!!! I kind of wondered if it would make him sick, but he kept it all down!!! At 3:00 PM we had to run him over to the facility for his therapy appointment. I promised that Jo would not miss any more therapies. It was a simple session of stretches and then 10 minutes riding a special bike machine that worked his arms and legs.

Jo has not had one migraine since having his skull back in. In fact, he hasn’t had one headache, period!!! The scars on his head are looking so great! His hair is growing in fast and it will be fun to see what is covered with his hair grown in. Austin gave him a scalp treatment and facial and trimmed his beard yesterday so he looked beautiful today! I had taken him to our chiropractor and he worked on his rib, back and neck. His rib is doing significantly better and my plan is to take Jo every week to get worked on. We also have a wonderful massage therapist who lives across the street from us and we are going to have her work on him too.

As I was leaving Jo’s room tonight one of the speech therapist aids asked if she could ask me a few questions. She told me that his speech therapist couldn’t get him to talk much. She said she could get him to talk in Spanish more than English. She asked if he communicated with me and did he make sense. I was a little shocked as this was 4 weeks into his stay at this facility. Yes he talks. He talks in full sentences. He initiates conversation verbally and in texts and on the phone. She asked me if Jonah was very outgoing before his accident. This made me laugh. I told her he was off the charts outgoing! He was the guy that sought those that looked like they were left out and brought them into the fold. I explained that it now takes so much effort for Jo to talk that he doesn’t talk unless you are talking about something he wants to talk about, but he will talk! I told her he talks slow, quiet, and somewhat delayed sometimes, but he understands everything you are saying and he is all there!!! Be patient with him and talk about rugby or becoming a counselor or his family or his mission and you’ll get him to talk.

He only has two weeks left in the facility and then he is home for good. We have so much to work on to get him home!!!

I believe these words from the song “Cry Out to Jesus” by Third Day.

And to all of the people with burdens and pains
Keeping you back from your life
You believe that there's nothing and there is no one
Who can make it right

When you're lonely
And it feels like the whole world is falling on you
You just reach out, you just cry out to Jesus
Cry to Jesus

There is hope for the helpless
Rest for the weary
Love for the broken heart
There is grace and forgiveness
Mercy and healing
He'll meet you wherever you are
Cry out to Jesus, Cry out to Jesus

We’re gonna make it! WE ARE!!!! Jonah is full of light and joy. He has a ready smile. He never ever complains. I don’t know why, but he doesn’t. He is just incredible to me!!! I love him, he is teaching me so so much! I LOVE MY BOY!!! #JustWakeUpJonah

Tuesday, August 2, 2016

July 19-20, 2016 Huge Miracles Come with Jo's Skull Being Replaced!!!!

0, 2016

I did not close my eyes until 2:36 AM this morning. I already dreaded opening them again at 6:45 AM to take Holland to swim team practice. I knew it was going to be a long and emotional day too! Jonah text me at 7:50 AM and said hospital transport was there to take him to the main hospital for his surgery to place his skull back on. The words made my stomach sting. I was placing a lot of hope on BIG changes for Jo on this surgery. I prayed like crazy that this was going to be the ticket to ending the vertigo, vomiting and appetite issues. My fear of placing the stupid permanent PEG tube into his upper intestine was looming in my mind, and gave me a heavy, dark feeling whenever I considered it, but we were going to be forced to move this direction if a change didn’t happen soon. I responded to Jo that I would pick Holland up from swim and meet him in the surgery waiting area.

As I pulled into the parking area of the main hospital I felt overwhelmed at having to be there again. I have developed a love/hate relationship to the place. There is a huge construction project going on right now and parking is sparse and usually impossible to find near the entrance, however I was blessed to find a space quickly and hustle myself up to surgery. I was ushered to Jo’s room and as I walked in and saw him lying there, tears exploded from my eyes.  I barely asked how the ride to the hospital was and was asked to go out to talk to the woman at registration. I tried to see the forms I was to sign and answer the questions she was asking: “What surgery procedure is Jonah having today?” “Is Jonah allergic to anything?” “Do you have your insurance card?” “Who will be waiting here for Jonah today?” “Can I have your phone number?” “Is this Jonah’s correct address and phone number?” “Sign here and then I will have you talk to registration downstairs,” and she handed me the phone. I guess it was the stress oozing from my body, but I could not stop crying as hard as I tried. Tom had left for work at about 3:00 AM to get things done and hadn’t made it to the hospital yet, I wanted him there.

When I walked back in the room the nurse was busy doing her nurse stuff with Jo. I asked Jo if he was nervous. He said he was nervous and excited. Tom finally made it, sat down in the recliner next to Jo and promptly fell asleep. Various medical staff walked in and out of Jo’s room asking many of the same questions as the one before. Soon the anesthesiologist came in with the surgical nurse, both were male. After the anesthesiologist gave his spiel the surgical nurse stepped forward and touched Jo’s arm. He told him he would be in surgery with him and that it was good to see him. He told him that he looked so good and that he had been following his story through his mom’s blog. His tenderness and regard for Jo was so comforting to me and gave me a boost of courage. Honestly, people just don’t know how amazing, comforting and even powerful it is to have them show that they care. In less than two minutes I was filled with love for this man. I wanted to grab him and hug him and thank him for knowing who Jo is and what his story was.

Within a short period of time, Jo’s neurologist walked in. This is the first time Jo has met him, which he remembers anyway. I have a love/hate relationship with this man. He is our number one Brilliant. The last time I had any encounter with this man was the day he came in to talk to me about placing Jo’s permanent shunt and I had questioned his decision based off of the information I had been given by the neurologist, Brilliant number 2, whom had been on the ICU floor caring for Jo the week prior. Brilliant one was completely put off by my questioning him and had told me that if I wanted to risk infection and a myriad of other issues we could do what Brilliant two had suggested; all said with an air of annoyance and anger. Another mother with a child who experienced a TBI shared with me that once you get beyond the brilliance, Brilliant one has a very tender and spiritual side. I have been thankful for her insight, as it has helped me try to look beyond the exterior. He was all business. I asked him how he would attach the skull and he drew several diagrams of different types of titanium pieces with holes for screws. He explained that we only had one shot at this procedure and that it will be imperative for Jonah to not touch the sight at all for risk of infection. This has made me nervous because since Jo was able, he has always played with the wounds and skin of his scalp. The brilliant went on to explain that bacterium love dead bone and should the dead bone piece become infected it would have to be removed and thrown away and then another period of time would have to pass before another option could be place. I prayed right then that the Lord would take control of this situation and not allow any microbe to infect any part of Jo’s head or body!

As Brilliant one was about to leave he said, almost as a passing statement, that Jo’s skull had not yet arrived at the hospital. He said it was flown in to St. George airport and had supposedly arrived at 10:30 AM, however it hadn’t arrived at the hospital yet. He said that once the piece arrived, Jo would be taken to surgery. He said he would take as long as necessary to place the piece, however he didn’t anticipate it taking much longer than two hours. They came and took Jo to surgery at about 11:30 AM.

We were told at 3:00PM that Jo was done and we could move to the ICU waiting room to wait for the Brilliant to come talk to us and see Jo. At about 4:00 PM the Brilliant finally came out to simply say the procedure was done and all went well and that we could go see Jo. Jo was set in a sitting position in his ICU bed and he looked miserable. There was a thick gauzy bandage stapled directly over the large horseshoe shaped incision, which encircled the whole right side of his head. His eye and face were already beginning to swell. He was holding the mechanism, which suctions out debris from open orifices, lifting it to suction out his own mouth every few minutes. Within minutes of being in the room with him he began throwing up. It went everywhere. He had absolutely no ability to move his head and he was completely at our mercy for help. We cleaned him up and changed his gown only to have him throw up again. Jo has had multiple surgeries and has not thrown up from the anesthesia, however he has thrown up from the narcotic pain meds. I told his nurse that as soon as they could stop giving Jo the narcotic, he would probably stop the severe vomiting. I asked what they were giving him for pain. The narcotic was one they had given him continually in the ICU, however we would never have known if it made him sick as during that time period his stomach was continually being suctioned out and he had no gag reflex do to the paralytic drugs they were giving him while he was comatose.

I asked Jo how bad his pain was and what type of pain it was. I was hoping he wasn’t battling a migraine. He said the pain wasn’t a migraine; it was more of a bone pain in his head and then his jaw and ear were killing him. This made since as the incision and most of the muscle manipulation was just above his ear.

Jo continued to throw up through the night, however they stopped giving him the narcotic early in the morning and the nausea ended. They moved him out of the ICU and to the regular floor late in the morning. I explained to the medical staff that I was hoping Jo could remain there for the next few days to recoup from the surgery enough to get the most out of his days remaining at the acute rehab and give us more time to appeal their decision to transition Jo back to a lower level of care facility. He only has three days left at the acute neuro-rehab and my heart is just sick about this. Jo had a reasonably calm experience throughout this day once the vomiting had stopped. His nurses were kind and attentive. The only pain med he could tolerate was Tylenol and this did little to alleviate the pain in his head. The swelling was increasing; it seemed to enlarge by the minute around his ear, jaw and right side of his face.

July 21, 2016

I received a call first thing this morning informing me that they were transporting Jo back to the rehab this morning because there was no medical necessity to keep him there. I swear, we are so pushed around by insurances. It would be better to bring him home, if it were possible, to have him recoup from his surgery and then take him back to the rehab when he was physically in a position to be tossed around in therapy. The way it is now, he will use up the precious days there doing little because of the pain he is in with his head and face. I hate this feeling of being so trapped and without a voice. The bottom line is that it is all about a policy, and money. It has little to do with health care and seeking the very best treatment plan to get the patient to his best capable self. It is so hard not to let the anger consume me at times.

The women that transported Jo back to the acute rehab were incredibly tender and gentle. As transport and the nurses were getting Jo off the gurney and settled in his bed, the social worker came out of her office, which is just across the hall from Jo’s room, and told me that I needed to inform her where I wanted Jo sent. I was put off by her question and had to orient myself to what she was saying. She stated that he only had ONE day left at acute rehab! I couldn’t say anything as she went on to say she too was blown away at this and had gone back and counted his days; this day was day one and then that day was counted for this. . . blah, blah, ramble, blah! I felt as though the air had been sucked out of my lungs!!! She asked me if I had heard anything from the insurance company. I explained that I had called the appeals department repeatedly only to be sent directly to an answering machine, the message informing me to leave the pertinent info for them to return my call. The social worker listened and then asked me again where I wanted her to send Jo’s records, again informing me we needed to have a plan in place should the insurance deny. I don’t know any other way to describe this woman than to say she is a straight-faced piece of stone, just doing her job! She needs to work at the DMV!!! The new physiatrist on the neuro floor came to the doorway at this point and talked to me about making the transition as smooth as possible. The two of them were very clinical. I had to just close my mouth and my brain or I felt I would explode with the grief and anxiety that was quickly overwhelming me. Even though I knew it wasn’t their fault, I wanted to punch the two of them for their clinical-ness! How was this woman a social worker??? And what was she doing working on that floor???? I looked up at that moment and my eyes focused on her LCSW credentials and I just couldn’t believe it.

I went in to tell Jo I needed to go work on some things, kissed him and then walked quickly to the elevator. When I got to my car I tried to call Tom to share my grief and have him help me. There was no answer. This is such a lonely experience!! Some of my anger is now transferred to Tom for not being available. I get it, he needs to work, however he has not been available for weeks. He has had to make up lost time. He goes to work some mornings at 3 AM and works until 8 or 9 PM, except on Tuesdays and Thursdays when he has bishop meetings and then he is home by 5:30 to be ready to go at 6:00 PM. He comes home, sits down and is out like a light. There is no conversation. It is not his fault, he is doing his very best, but I want to punch him in the face anyway because Jo and I need him! It is during these times, and there have been so very very many, that the Lord reminds me that He is the One that can do what needs to be done and that this is between Him and I. Don’t look around, LOOK UP!  I called the insurance appeals again . . . NO ANSWER!

I left and went to the new rehab facility that I have chosen. I walked through the door and asked for the man I have spoken to before. I am invited to his office and tried to speak but couldn’t because I was sobbing. He was patient and waited. I told him that Jo was going to need to be moved the next day. I explained that Jo was only two days post op. I explained how limited Jo’s pallet and that he was still having difficulty with wanting to eat and nausea. I explained my concern with getting the rehab he needed. The man listened. He gave empathy. He took me, yet one more time, around the facility and picked a room for Jo just off the nurse’s desk area. I left the facility feeling heard, and handled. He told me they would send a transport to the hospital around 1:30 PM to pick Jo up! I got to my car and just fell apart. Heavenly Father please go before us!! I heard my phone text notification “Ping” and looked down to see Jo’s text message, “You should come back and talk to me”. I thought, “Okay son, I am on my way”. I had to freaking pull it together!

On my way back to the hospital I tried the appeals department again and finally spoke to a human. She was business-like and informed me that there was NO appeal on file!!! I practically screamed, “WHAT?” I explained that I sent all documentation and the appeal form 8 days prior. She asked if she could put me on hold while she checked. Minutes later she returned and informed me that the appeal was sitting on the MD’s desk waiting for him to decide if it truly was a “Expedited” appeal or not. I just shook my head, as I had no idea it had to be decided whether it was or was not an expedited appeal. I asked when I could check back to see what the MD had decided. She told me I could check later in that afternoon. 

I walked into Jo’s room and he looked at me. I asked him if he was in pain and he said he was. I asked him if he wanted something stronger than Tylenol and he said no, he didn’t want to throw up. I went and filled up his ice packs and placed them on the side of his head and face, propped up there with a travel pillow I had brought from home. I pulled his socks off and washed his feet with warm wet towels and then rubbed his feet and legs with lotion. I tucked his feet and legs tightly in his fuzzy soft blanket and sat beside him and started reading to him. Soon Jo poked his hand out from under his blanket and signaled for me to hold it. After about 30 minutes he closed his eyes and I stopped reading out loud. He was finally relaxing from his pain and resting. I sat there with him for the next three hours holding his hand as he slept. It was quiet, and peace filled in his room. The Lord was giving Jonah and I a break. I prayed a prayer of thanks giving for all of the miracles and tender mercies and understandings and teachings He has seen fit to give to us. I was so thankful that I was being able to comfort him. Tom was finally able to come just before his meetings. Jo was asleep, but I was thankful he was there. It was now time to leave to take Holland to swim team and my heart broke, as I had to say goodbye to Jo. I explained to the wonderful nurse that I wanted his ice packs to continually be changed every couple of hours and propped next to his face, as this was the only relief he was getting. As I climbed into bed at 11:30 PM, I realized I had forgotten to call the insurance to see what status our appeal had been placed in the craziness of the afternoon. I feel like such a loser sometimes!!

July 22, 2016

I called the insurance company first thing this morning as I sat outside the acute rehab. I talked to the same girl as yesterday. She informed me that the doctor not only decided that the appeal was to remain in the expedited status, but had marked it a “RUSH”!  This encouraged me as I heard those words, however my hopes were dashed when she informed me that it could still be several weeks before a decision was made and there was little chance that I would win the appeal because it mattered not that there is a medical need or that the acute rehab was willing to accept a lower amount of money, or that doctors wanted him to remain there; it was about what was in my policy, the one I had “chosen”, and the number of days allowed for the various facilities. They base treatment off of necessity only within the bounds of the policy and allowances in which you have in the policy you are signed up for. She informed me that I could go ahead and keep Jo in the acute rehab, I would just have to pay out-of-pocket for the treatment and stay! Remember, she says, it is your policy – not ours. Well, thank you very much for your assistance. I sat for a moment longer trying to gain control of my emotions before I headed upstairs to let Jo know what was going to happen today. I tried to call Tom and tell him what was going on. When I got him, he informed me that he was in a hurry and would stop by the hospital on his way to install. I am really having a problem with Tom not being available. I am so overwhelmed and wish I had someone, okay not “someone”; I want Tom to walk this with me.

I walked into Jo’s room to a perky Jo! He was still swollen, in fact his eye looked like a slit from the swelling around it, however he seemed different. He was getting ready to go eat in the common dining area of the unit. He ate one chicken strip and a few sips of water and called it good on the eating.

I was just finishing packing up Jo’s stuff and getting ready to head over to his new facility when the social worker popped into Jo’s room to inform us that the new facility was there to pick him up. They were an hour early. Eeeesh, it unsettled me that I hadn’t made it over to the new facility to hang Jo’s posters up and unpack his things before he was brought over. The driver wheeled in a wheel chair to transport him. This was new; he has only been transported from facility to facility by ambulance. I wondered if it would make him sick. The transport man was so gentle and so kind. He wheeled Jo to their van and asked if I wanted to ride in the van with Jo. I was wishing I had made it over to the other hospital earlier with all of his things so I could’ve gone with him. Austin and I followed the van over to his new facility. My anxiety was getting the best of me as I was driving over, “Please Heavenly Father, go before us!”

While Jo was being placed in his new room, Austin and I made ourselves busy putting up the posters. Austin and all of her kids, and Chloe and all of her kids were there. It was chaos and stress!!! Within just minutes the activity director of the facility came in and asked if she could give the children an otter pop and then left to get them. Jo sat in his chair and watched the chaos. The woman came back into the room and passed out the otter pops and then out-of-the-blue Jo said softly, “I would like one”. I practically fell over in shock!!! Had the woman not been handing one to Jo I would not have believed that he initiated communicating a desire he had!!! In the last 24 hours there have been HUGE changes in Jo. It’s crazy to say this, but as almost imperceptible as the changes are, they are huge changes. It’s his “alertness” and his level of communication, and his ability to keep his head up straight for longer periods of time without my having to remind him to lift his head. His therapists had said he was a rock star in therapy and had moved so well. AND he didn’t get sick being transported!!!

We got his posters up and Jo into bed and the therapists came in to talk to us. As it turns out, one of Jo’s therapists grew up in Toquerville with my older kids and remembers being in the same ward at church. Jo was just 5 years old when we moved to Toquerville. Each therapist came in to talk with Jo and I, and listened to Jo’s experiences with therapies. We told them that he has been battling vertigo and that it has still been a huge barrier to moving forward with walking and crawling and going from sitting/lying to standing. Each one acknowledged what we were saying and talked of their experience with this. We told them that we had a goal for Jo to be able to attend Savannah’s wedding in a week and a half and all of the therapists jumped on board with this. By the time they were done, I was so excited. I was also relieved that Jo would have the weekend to rest and recoup from his surgery before hitting therapy hard.

The admissions man came into Jo’s room and dictated by cell phone, to a staff member who was at Costco, to buy food items Jo would eat. The nutritionist was also called into the room to ask Jonah what foods he would eat and while the three of them collaborated she came up with menus to put together a special diet for Jonah.  I am so incredibly thankful for this amazing act of kindness and extra mile service. Eating has been such a barrier for Jo in healing.  At one point in my conversation with the admissions man he said he would make a run to a restaurant to pick up whatever it was that Jonah was requesting. I would not allow him to have to do that, but wow!!! He gets it!! And THANK YOU, THANK YOU!!! Jo was feeling apprehensive and that was making me feel sad and stressed. Everything is new and different again and his last experience outside of acute rehab was ridiculous. I reminded Jo that now that he was in this facility we could bring him home for visits regularly. I left feeling so much more peaceful.

Tonight was Savannah’s wedding shower. All day long I kept thinking I couldn’t go because I couldn’t leave Jo in the new place alone, however as things worked out, Tom was able to go sit with Jo until he fell asleep. He said Jo did well. The shower went so well. Many friends we haven’t seen in so long, and family, came to support Savannah. Savannah’s new mother-in-law to be sat quietly, for most of the shower, not quite certain how to handle the Tuttle clan. We had yummy food and played some cute games. It was nice to experience some normalcy!

July 23, 2016

We went to the stake center to the 24th of July Pioneer Day celebration breakfast. I was anxious about bringing Jo home for the day. He is transferring so well now and he seems to be doing so much better with vertigo. He states that he doesn’t feel dizzy anymore, except when they roll him. He is doing so well with holding his head up and keeping it up. We decided we would try to take Jo to eat out and asked him what he wanted to eat. He said he wanted to go to The Habit for a cheeseburger. Eeeesh, that was just a little scary to me to take him out and I didn’t think he would be able to eat the food, but if that’s what Jonah wants, that’s what Jonah gets. To The Habit we went and we sat him at a table near the water misters. Jonah’s burger, fries and Powerade were set in front of him and the family took up residence at five tables in the outside patio area. After Jonah asked me to smash his burger down so he didn’t have to open his jaw wide, he meticulously ate every bite of his burger. He drank a 24 oz cup of Powerade, and ate an order of fries with fry sauce. HIP HIP HOORAY!!!!!  HALLEIGHLUAH!!!!! He hasn’t eaten like that for three months!!!! Oh my word, it is miraculous to see this! I waited to see if he would become sick. . . nothing. . . he was ready to go home for a visit!! Okay, here we go!!! It is hard to believe that having his skull back in could make this big of a difference, however it has. What a HUGE miracle!!!!!

Tom couldn’t stay at the house with Jo and me because he had to go to work working on things around the house that have been neglected over the past several months, so that meant it was up to me to get him to the bathroom, wiped and moved back to the couch. When the time came, Heather Saige helped me get him off the couch and to his transfer chair. We rolled him down the hall to the bathroom. She helped me stand him up and move him to the toilet and then she left the room. Jo and I finished the rest together. Heather ran and grabbed the things I needed and then we transferred him back to the couch. It felt wonderful to have been able to accomplish this great task. Jonah is such a trooper to have to deal with all of this. He is always so thankful.

Jo is still experiencing bone pain in his head and the area around his ear and upper jaw is still quite swollen and very tender. Jo said it is difficult to chew because of the pain of moving his jaw. I have continued to place ice packs on his face and this seems to be the only thing that allows him to be able to rest.

I asked Jo if he wanted to try to go to church in the morning. He was excited about the prospect, so we arranged to have Austin’s husband go pick him up in the morning because Tom is at meetings by 7 AM every Sunday. By 9:45 PM it was time to pack Jo up and return him to the facility, he was so bummed and didn’t want to go. Tom and I tucked him into bed and said a prayer with him. Jo told me he had slept flat in bed last night to show me he didn’t need a hospital bed!! He said he was so “comfy”!! Silly boy!!!  I reminded Jo, Jon would be there to pick him up by 7:30 AM, and told him I loved him as we walked out of his room. I cried all the way home. This just plain sucks!!! And yet, I am so thankful to have the facility because I don’t feel I am ready/trained well enough to have him home safely, however handling what I did today gave me way more confidence. I know I will be Jo’s sole caretaker the majority of the time. I have to be able to do everything.

July 24, 2016

Jo was sitting in his wheel chair at the door of his room waiting when Jon got to the facility to pick him up. Jon asked if he wanted to get dressed there or come home to do it and Jo said he wanted to go home to do it.  What a difference just twenty days made in Jo’s healing!!!!! July 3rd Chloe and I attended Jonah’s branch in his convalescent hospital and we had to take turns holding Jo’s head in an upright position throughout the meeting and have a barf bag on his lap in case he threw up at any moment, and now here I am today ironing a shirt for Jo to wear to our ward’s church service. He is able to hold his head up on his own and has been doing well with his digestion and nausea.

Jon had Jo ready in no time flat. He was shaved, with after shaved sprayed and we were off to church. Before I left for church I felt prompted by the spirit to listen carefully as there was something important I was going to learn. I was a nervous wreck bringing him into the building. I am still always worried about how he is feeling. I see and feel every one of his movements and hear all of his noises with hypersensitive nerves. I never know when he is going to get a headache or get dizzy or too tired. It isn’t an easy or fast task to take Jo out of the chapel and there was a little bit of a claustrophobic feeling to sitting in the far side of the chapel and I wanted to move to the other side, near the door but it was too close to the meeting starting and the available seats were taken now. The girls had all fought to be the one sitting closest to Jo. I had wanted to be closest to him on the bench so I could easily watch and question him as to how he was doing, however the girls were so excited to have him there and I didn’t want to take that experience away from them.

Jo sang with each hymn. It was so fun to hear him sing. As the meeting wore on Jo began to fidget, trying to make his bum less sore. He has now spent three and a half months either lying or sitting on it and he has lost so much weight his bum is actually getting pretty boney. He took his feet out of the footrests and set them on the floor. He tried pushing himself up and back in the chair. He placed his feet back in the rests. There aren’t too many ways to change positions in a wheel chair.  I finally asked the girls to move so I could sit next to Jo. I’m sure he got tired of my asking him if he was okay. He only said he was getting tired and that he could hang on until the end of the meeting. He was so thankful to be there.

I tried hard to pay attention to the speakers’ messages and worried that I might have missed what I was supposed to hear, however as the last young man began to speak I felt drawn to his message, he was talking about being strengthened by our trials and adversities. He began talking about our ability to “beat around the bush” of our trials by making the choice to go around the adversity so we don’t have to have the trial. As he said those words, my mind was pondering how it is that we do that. I thought of how some saints had chosen to stay in their homes and towns and not come across the plains to Zion in the early days of the church and then I thought of our modern day miracle of medications and our ability to use birth control to keep ourselves from having children because it isn’t convenient at the time, for one reason or another. Then the spirit explained to me that the way this message pertained to me was in my ability to move away from the home we are in. This is something that I have considered doing since just before Jo came home from his mission. Our home is so small and we haven’t been able to do to it what we had planned to do to make it more comfortable and larger for our family. I have been angry, at times, about being in this house. This thought process ended last year when Tom was made bishop, however as I have been realizing I am bringing my son home to this house I have felt it would be so much easier to find a larger home, one that would better accommodate a wheel chair and shower chair and hospital bed; maybe a home with a bigger shower and one more bathroom. The spirit told me that the Lord was asking me to stay where I am, even though I had the ability to “beat around the bush” of my trial and adversity and move. I replied, “Okay, I understand. I know that thou will provide.” I knew I was to stop even the thought process of considering moving until Tom has fulfilled his call as bishop.  Here was my message and I will do as I was taught.

After church Jo rested on the couch. He asked me to pull up my blog so he could read it. He was having a difficult time focusing on the words by himself and asked that Chan and I read him the entries. It was difficult for Chan and I to read the entries without great emotion. Jo would comment every-once-in-a-while, “Oh man!” or “Whoa” or “That was bad”. We only got through the first month of entries and he was overwhelmed and told us to stop. He asked to go in a lay in his bed. He cozied up in the covers and said, “This feels so good!” He slept for three hours. I had to check on him like I did my brand new babies. I would go in every ten to fifteen minutes and get close to see he was breathing and check his temperature. I love looking at his peaceful face and know he is happy!!! I just thought, “Thank you Heavenly Father for giving him back to me!” Jo is probably so tired of hearing me say, “I love you!” or asking, “Who loves you, Jo?” No matter how sick he is at the time, I always get at least a grin with the answer, “You do!” and “A lot!” He gets kissed and hugged constantly when I’m near. Tom just rolls his eyes and teases Jo with taunts about him being my baby boy!

The family gathered for dinner and Jo just sat and took it all in. The brothers and sisters were engrossed in various conversations about guns, presidential candidates, wedding, and church, and Grandbabies were everywhere, running in and out of the house. Some were on the trampoline jumping as water from the oscillating sprinkler, placed strategically beneath the tramp, sprayed them. As they jumped and slid across the tramp, water was released into the air from the mat in unison to each jump and slide.  Other grandkids sat in the unplanted flowerbed filled with sandy dirt and built sandcastles and mud pies. Their skin was getting toasty brown as all ran around shirtless in soggy shorts or droopy panties. Screams, laughing and cries were the dominant sounds of the afternoon. I am still absolutely amazed at how the kids will randomly pause in their riotous play and walk up to Jo and lay their head on him and tell him, “I love you, Unka Jo”. It kind of reminds me of a child “checking in” with mom to see that she is still around and he/she can then continue to feel safe playing. In response, Jo wraps his arms around them and while gently rubbing their back says, “Oh, I love you too!”

I had two profound thoughts come as I experienced this time with my family today. The first came as I realized the words that had been given to me days ago, in the first verse of “Be Still My Soul” had come to pass. Just three days ago I was feeling as though the bottom was falling out, as I had fought the insurance to allow Jo to stay in acute care. I thought I had lost the battle only to find a whole new beautiful bunch of people ready to help and serve Jo at his new facility. The bonus was that the new facility allowed him to be home with his family more. I am so very thankful!!!!:

Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.

Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

The second thought was that the Lord already knew what Jo needed most in order to heal at this point. Jo needed to feel close to and be with his family. This new facility allows for Jo to come home and still allows for Jo to receive the therapy and medical care he needs. The Lord has healed him enough, in the blink of an eye, through his skull being placed again. He is now in the perfect situation to continue to move forward in his learning to walk and use his body again.

I have been given a stronger testimony that there is life after this life. I bare testimony that we existed as spirit children before we came to this earth. We had wonderful relationships then and these relationships span through time and the veil. I believe our family unit goes on beyond this earth and that the veil is thin and we are ministered to, and served by our loved ones that have gone beyond the veil. I know this!!! We are not alone! I KNOW God has Jo in His hands, I know it! I fight the fight until the end and watch, with tears sometimes, as He closes a door I tried so desperately to open or keep open, and even through the sadness, the tears, and mad craziness that I feel can consume me at moments, I know He will always guide, provide, protect, comfort, teach, lift, sustain, and love me!!! I can't tell you how many times I have screamed, "I'm DONE, I can't do this anymore without you Lord!!” and He has answered me and sent peace and help.  I believe there is a plan for each of us. He will provide the way! I heard these words the other day from the song, “Oh What A Friend We Have In Jesus”:
Oh, what peace we often forfeit,
Oh, what needless pain we bear,
All because we do not carry
Everything to God in prayer!

And then one more line from another song, “Dear Younger Me”:

You were never meant to carry this beyond the cross

Christ has already bore our grief, sorrow, pain, and sin. Don’t carry your burden longer than is necessary. Lay it at Christ’s feet and walk away!

I have said for so long that Jo is going to be the same as he was before his accident, but recently I have realized that I am wrong! He is going to be better than what he was!! He has been able to go through a sanctification process of sorts. He is already more than he was; he has been purified in a sense. He has been allowed to touch heaven and be changed forever, having a sense of who he was before he came to this earth and knowledge of his great worth and the foreordained mission he has been given to accomplish while he is yet on this earth. He has a great deal more to accomplish and many people to influence and serve in order to fulfill his life’s mission. 

When we brought Jo back to the facility his nurse came into the room concerned that we had had him out for too long. I felt bad that I hadn’t thought to call and let them know that Jo was doing well. She stated that we needed to at least take his meds with us when we take him out. She was so right! It made me emotional and teary, not because she did anything wrong, but because it was what I needed to finally let go of the anxiety I had felt throughout the day. Man, I am a case sometimes. I am thankful for the concern and care of his nurse.

July 31, 2016

Jo was able to come home everyday this past week after his therapies were done. I have grown in my abilities to meet Jo’s needs. What a great blessing it has been to have this time to learn without having the full responsibility of care on our shoulders yet. Tom has been very absent this week and therefore the transporting and care has been up to my girls and me to handle the majority of the time. There have been some scary moments. Today I was helping Jo in the bathroom. My older children were otherwise occupied and I thought Jo and I could handle it. However when I got him up from his transfer chair and moved him just two steps, his left leg gave out and we slowly dropped to the floor. Jo’s neck knocked the edge of the shower chair and I panicked. There was absolutely no way for me to get him back up. Within seconds I had help from my older girls and we got Jo back up. I cannot even tell you how scary some of the things are that happen. I shook like a leaf and was quite teary for a bit after. I have been told so many times, by so many people, that there will be times when I will fall with Jo when caring for him. Chandler told me that the other day when she was watching Jo for me, she had to move him. She said, she had said a prayer for the Lord to give her the strength she needed. She said as she grabbed Jo and lifted, it was as though he weighed nothing. She said she just couldn’t believe it.   I watched him so carefully for the rest of the evening to be sure we hadn’t hurt him again! Just before taking him back to the facility I asked him if he was bumming and he said he was a “little bit”. I asked him why and he stated it was because he fell with me. I told him there are no worries unless he was hurt.

During the church meeting today all men were asked to come to the front of the chapel and sing the hymn, “Ye Elders of Isreal” for the rest number. IT WAS BEAUTIFUL!!!! I asked Jo if he wanted to go up-I didn’t know how I was going to get him up there, but I thought we could work that out. Jo said he didn’t want to go up, but he sang softly from where he was sitting. Jo had turned to me after the song with a giant smile and shining eyes and said, “I love that song! It reminds me of Nephi and David and the armies they led. After the meeting a few men came up to him and expressed their love to him for singing the song with them. It shocked me that anyone had noticed. Music has been so important to Jo in his healing process. He listens for hours to the Mormon Tabernacle Choir station on Pandora using his iPhone and the speaker in his room. The words and music have calmed him and invited the spirit to attend him in his great moments of pain and anguish, and hours of loneliness when we were unable to be with him! 

Savannah’s wedding is this next week. There are still so many things to do to be ready. Our plan is for Jo to get to go to the sealing in the temple on Friday. He is so excited to get to be there. He is one of Fred’s groomsmen too, and has been working to increase his stamina.
I LOVE MY BOY!  #JustWakeUPJonah