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
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
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