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

1 comment:

  1. Oiiii, finaly a new post :) :) :) :)
    How exciting news Jo, sooooo glad to hear you are doing so well after the surgery.
    Lots of strength and patience to all of you!
    Ulla from Finland

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