August 18, 2016
I had dropped Jo off after having lunch with me so he could get to his afternoon therapy session. Therapy was going to be in the pool today and this means that after he is all done they will roll him to his room and he will get a shower. I told Jo to call me after he was done and I would come get him. About two hours later I got a text asking if I was coming. I asked him if he was ready and he said he was and that he was already in his wheelchair, so I said I’d be right there to pick him up. As I walked in the room his CNA was just finishing dressing him by putting his shoes on. I was confused. She looked up and began to explain to me that she didn’t know I was coming to get him and had put him in a hospital gown for the night. (It was 4:30 PM) The hospital gown was lying in a heap on the bed. I can’t explain why this was so freaking sad to me except maybe that, what 21 year old kid gets into jammies at 4:30 PM in the afternoon? Certainly none of my kids opt for that. And why doesn’t he speak up for himself and question what is being done to him. He just takes it all. After I got him into the car and we were driving down the road I asked Jo why he didn’t say anything to the woman when she started to dress him in the nightgown. He answered with, “I didn’t know what was going on!” Eeeesh, this made me even sadder!!! He said, after she was done and he could get to his phone he text me and asked when I was coming. My mind started wondering what his life would be like without his mom and family, and then I thought, “How many people are there out there with no one to help them get where they desire to be-in any aspect of their life?” Whew, I could hardly talk. I looked at Jo and saw no expression except one of, “Just happy to be here” and I asked, “Jo, how come you never ever complain?” His answer threw me over the edge, “I don’t have anything to complain about”. Holy crap, and here come the tears!!
August 19, 2016
I took Jo to the doctor to see if there was any damage done to the optical nerves. He has had a difficult time seeing text when he is trying to read. He has asked why everything is so small now. The facility drove him to the doctor; Chan and her girls came with us on the facility transport bus. Getting into some buildings, public bathrooms and other public places can be quite a challenge and my eyes have been opened to the struggles of those with disabilities to maneuver through life trying to get normal things done. There are many things that take so much more time and so much more effort to accomplish because gaining access to what you need is like going through an obstacle course. One of the hardest things is finding an establishment that has a “Family” bathroom. I cannot go into a men’s bathroom and I cannot take Jo into a women’s bathroom. This really limits where we go and how long we are able to be gone.
The first thing Jo said as we were entering the office was that he needed to use the bathroom. My heart sank as I saw no family bathroom and the bathrooms were not wheelchair accessible. Fortunately, the receptionist saw my struggle and offered the doctor’s personal bathroom. I was thankful I had brought one of my older daughters because this was clearly a two-man job. I hadn’t factored in this issue and therefore we were causing the doctor to be delayed in his schedule. He was kind and acted cool and collected as we finally entered the exam room.
As the doctor completed his thorough exam, he was astonished to find that although he would have anticipated damage to at least some of the 6 major optic nerves, Jo’s eyes looked perfect!!! He said Jonah’s prescription changed only the 10%, which would be considered normal in the 3 year time period since Jo’s check-up prior to his mission. This is yet one more miraculous blessing!!
Later on our way to lunch, my granddaughter, Emery (3), was sitting next to Jo talking to him. She uses her sing-song mommy-talking-to-a-little-baby tone and voice whenever she addresses Jo and then uses her excited-lottery-winning voice as she reports Jo’s responses back to her mom. Jonah was just being his “new normal” quiet-self, never changing his facial expression, as Emery talked and Jo answered her. Chan and I were just being quiet observers.
Emery: “Jonah, say Ellie!” (Ellie is Emery’s 8 week old baby sister)
Emery: “Mom! He said Ellie!!!”
Emery: “Now say you love the fair!!” (Our county fair was just a few weeks ago)
Jo: “I love the fair.”
Emery: “Now say you love mustard!!!” (Wait, WHAT? Mustard, where did that come from????!!! I had to look up at her and Jo through my rear view mirror as I started a laugh I couldn’t control!!!)
Jo turned and looked at her and said, “NO!” Him turning his head is a BIG deal because generally he doesn’t move his head from side to side.
Emery: “Jo, do you want to hold Ellie’s hand? She won’t bite! I’m holding her hand and she’s not biting meeeee!”
Jo didn’t move or say anything.
Emery: “Do you want your mama, Jo? . . . Named, Gramma??!!!”
She totally lightened my soul!!!! She is such a sweetie!!
August 22, 2016
One of Jonah’s best friends, Greg, suggested Jonah take a religious class this Fall Semester at Dixie State with him. As the three of us discussed this, the idea of it sounded perfect. It would be a great opportunity to see how Jo will do in a classroom situation. It will allow me to see how difficult it is for him to read from a text for assignments. It will allow me to see how well he can sit and listen and interact with his teacher and fellow students. I will be able to see if he can tolerate some of the rigors of school without it affecting his GPA.
The two boys chose two classes. We signed Jo up and he attended his first class today and absolutely enjoyed the experience. He will be going to class one hour a day, Monday through Thursday. We have informed the nursing facility and they have been wonderful to accommodate the classes and move his therapies to work around the classes for his last week in the facility. I’m so excited to see how this all goes.
August 26, 2016
Today was Jonah’s last day at the rehabilitation center; he is coming home for good. It has been absolute torture for all of us to take him back to the facility at the end of the day over these last few weeks. As soon as his therapies were done each day I would go pick him up from the facility and bring him home until 9:30 or 10:00 PM. Over the last several weeks I have been “practicing” doing things like helping him use the bathroom, shower, eat, take his medications, get into bed, transfer from the wheelchair to bed, couch, and car, and dressing/undressing him. I have felt that I can do all of these things now and have been so tempted several times to just bring him home. The only reason I haven’t is because I would be robbing therapies from him. The way our insurance is dictating Jo’s recovery is by the limitations it has set in it’s contract regarding level of care. If I took Jo out before his 40 days in this facility, he would not get the remaining days of therapy. They would just take those therapies away from him and he would move to the next level of care, (Home care) and the number of therapies he gets for that level of care would kick in. It is really sick and wrong if you ask me. They are actually spending more by forcing him to stay in a facility when he doesn’t need that level of care any longer!!! Jo actually has about 7 more days he can stay, however I can’t make Jo do this any longer.
Jo still cannot hold his head up for long periods of time. He lifts his head up when we remind him to do so and he is better at keeping his head up for longer periods of time, but he still doesn’t do it automatically. I have to remind him to swallow the saliva that pools in his mouth naturally. He chokes several times a day when he is swallowing saliva or a drink. He has a very limited number of food items he will eat regularly. He still spends the majority of his day lying down. He cannot sit up, without slouching, for an extended period, without support and he prefers to be prone to sitting because his bum is so so so tender. He has little balance when he is stood up and cannot stand by himself. He is able to move from chair to bed easier, but still requires a great deal of assistance. Once lying down he cannot move his body over. This is a problem when I am putting him to bed because he ends up sleeping on the edge of the bed because I absolutely cannot move him over by myself. He cannot undress or dress himself, by himself. He needs many many cues to move his legs, arms and head in the correct manner. He is on 8 different medications still. He absolutely hates taking pills now and if they are not coated or if they are very big it is a little frightening to him to take because they feel like they choke him. On his discharge paperwork it says that he is incontinent. I have not experienced this when he is with me. Maybe we will have a problem through the night, but if I am there to help him get to the restroom, he has no issue telling me he needs to go! I am a little baffled by this diagnosis.
They had him in the harness yesterday, walking him on the treadmill to teach his brain the motions of walking again. He wears out quickly doing this and a therapist sits to the side of the treadmill and manually moves Jo’s left leg in the correct walking motion while the treadmill slowly moves. He has only been able to tolerate about 5 to 8 minutes at a time.
I would be absolutely lying if I said I wasn’t freaking out about having the full responsibility of Jo’s care on me. I am absolutely frightened of not having anything but an emergency room available for medical questions/issues through the night. I feel as though I am a young mommy with a young child again. His stroller is a wheelchair. He is a picky eater. I have to shower and wipe him. I have to have someone tend him if I need to leave him and it has to be a very specific person who can help him to the bathroom and know how to transfer him safely and care for his consistent choking and understand which medication is for which issue.
I got to Jo’s hospital right after I dropped Heather Saige off at school. Jonah was already up, ready for his day and sitting in his wheelchair. I quickly took the posters that we made for him in the beginning of this ordeal, off the walls and packed his clothes into bags. Within a half hour his release papers were signed and I was loading him into the car. As we drove away, I looked into my rearview mirror and was overwhelmed by the thought, “Here we go!! Another phase finished. He’s only 21 years old and has his whole life ahead of him!!! Everything is going to be right again, just have faith and patience!”
August 27, 2016
Our first night went well. Jonah slept well. I had set up the baby-cam in his room, next to his head, so that I could see and hear him while in my room. We practiced before he went to bed having him say, “Mom!” as loud as he could. Our problem is that Jonah’s loudest voice is still just the volume of a loud whisper. I worried that I wouldn’t hear him call for me to help him to the bathroom or help him with any other thing he would need. It’s been a long time since I have had to hear a child call for me from another room and I have lost that wake-up-to-any-sound ability. As it turned out, the speaker in my room was not enough to wake me with Jo’s soft voice, so Jo decided to call me on his phone. That worked, I awoke and all was well. I still like having the video and speaker in my room because it is easy to check on him throughout the night.
In the morning, I pulled Jo up out of bed and transferred him to his wheelchair. We began his showering process and then dressed him. We then hurried to the kitchen to begin breakfast. This morning he was willing to eat a bowl of cereal and two fried eggs on toast. I gave him his handful of morning pills and he took them without incident- that was a huge relief. I felt pretty accomplished. Guess what??? He’s not incontinent, he called me in the night and we went to the bathroom!!!! Freak, I just get so gosh darn mad sometimes at the crap Jo has had to deal with!!!!
Even though it is a Saturday, the home health agency now assigned to Jo sent a physical therapist out to our home to do an assessment. The therapist informed me that a sweetheart of a man that we have known for the last several years was Jo’s real therapist, however he was overextended in work right now and would see us in a few days. This news was a tender mercy for me. The therapist began with the same general activity tests I’ve seen all of the therapists do initially: “Squeeze my fingers as tight as you can Jo”, “Bring your knee up. As I push down on your knee, you resist”, “Follow the end of my pen with your eyes without moving your head”…. He said he was amazed at what Jo was able to do given what he had read about Jo’s injuries. He asked Jo what he would like to gain from therapy. Jonah’s pat answer is always the same, “I want to walk!”
The therapist then went on to do therapy exercises with Jo. It was neat to see him use the things in our home as the “tools” to assist Jo in his therapy. The therapist rolled Jo’s wheelchair to a position facing the kitchen sink. He had Jo grab the edge of the sink and pull himself to a standing position. At the sink and counter he had Jo do all kinds of strengthening exercises. He pulled out a resistance band and had Jo do resistance exercises using his arms in various ways. Jo used the counter as he would one of the bars along the walking platform at the rehab center and moved himself down to the end of the counter and back. Before the therapist left, he gave Jo and I handouts describing his exercises and instructions to do them several times a day until he comes for his next appointment.
September 9, 2016
Jo’s occupational therapist finally came for his first evaluation. He came in and asked Jo to take off his shirt and put it back on. He asked him to take of his shoe and put it back on. He then said, “Looks like you’re doing pretty good. Call me if you need anything more!” Are you kidding me??? All I could think was, “What an ass!!” There is so much to occupational therapy. I guess he is just about minimal. You are dealing with a 21-year-old boy with his whole life ahead of him. I just don’t understand!!!
The last week and a half has been a challenge for Jo and me. Jo decided last week that he didn’t want to go to Institute. No matter what I said, he would say, “I don’t want to leave you. I just want to be with you and the family.” I probed with questions like, “Has anyone been unkind to you?” “Has anyone been making fun of you?” “Do you feel like you are understanding what is going on?” “Is something scaring you?” “Are you feeling self-conscious?” There was nothing I could get out of him except, “I don’t want to leave you.” My heart was sinking a little as I thought that this was a sign of things going backwards. I wondered if he felt that he was missing out on being with us during the lunch hour. Lunch is our family’s time to be together and usually most of the siblings gather for lunch somewhere. Because Institute is during the lunch hour, Jo has been missing out on that time. He always was fed, but he wasn’t with the family at lunch. I am going to try to get the family together before the class so he can do both and see if that works.
September 16, 2016
We weren’t allowed to get a walker with our insurance because of technicalities, which said if Jo needs an electric chair then he doesn’t get a manual wheelchair, walker or any other device too. Since they had come to measure Jo for his electric chair two weeks before leaving his last facility, it is a done deal. His therapist had instructed me to go to the thrift store to buy a walker. I hadn’t thought of that, so I went and found a beautiful nearly new walker the exact size for Jo for $12.00! When his therapist came this time he brought a walker he had purchased for Jonah too. It absolutely touched my heart that he would do that for Jo. Jonah has been working hard to have the ability to walk with a walker. His therapist walks him up and down the hall with it and counts the number of times Jo begins to fall backwards and the therapist is needed to correct him. It was a little frustrating to Jo to hear him say that it is consistently at least six times per run that he has to be caught from falling.
It has been amazing to watch the therapist work with Jo while Jo is on his hands and knees. He is able to rock forward and back and to each side. The therapist must help Jo pull his left side up repeatedly as that side of his body looks as though it is melting after a few minutes. That side is so much less able to receive the proper neurological signals from the brain to remain up in comparison to his right side, which isn’t compromised from the injury. All of these exercises are meant to help re-map his brain to recognize those body parts on the left and use them properly.
I stand there watching this exercise with the same emotions I have when I am watching a terrifying movie. This reaction is brought on by the horrifying memories I have of Jo in the neuro-rehab in this same position, his face crumpled from the pain he was experiencing in his head for being in that position. Within moments vomit would explode from his mouth from the pain and vertigo. Then for the next several hours he would be unable to stop vomiting because of the cycle it started. Jo still gets a headache from being in position that places his face downward in a prone position, however it is not as severe as it used to be and the pain and minimal vertigo abates within a few minutes after he has sat up.
The therapist has worked with Jo to help him move himself over in bed. He has gotten quite good at this. I no longer worry that he will fall off the edge of the bed.
Jo has also gone back to attending his Institute class; he hasn’t missed another day. He participates and has been asked to prepare a thought to present in class.
September 17, 2016
This morning the young women of the church had the responsibility of cleaning the church. Because two of my girls were not available I felt like I should go over and clean to take their place. Our building has a strange layout compared to other more modern churches and there are “wings” and rooms I have never been in. As I worked my way through the chapel and out a side of the room I have never been in I ran out of cord for my vacuum and went in search of an outlet so I could continue. This room was a miniature foyer and was lined with couches and chairs within its narrow corridor. There were no outlets on the vacant walls so I began pushing the chairs and couches away from their walls. As I pushed the largest couch away I found a pile of programs. As I was gathering them the thought came into my mind that they were from the Sunday of Jonah’s accident. Even as that thought came into my mind I thought how absurd it was to think, as that was five months ago. My stomach stung as I read date on the front of the program because not only was it for the day of Jo’s accident, but it was also for my own ward. On the front of each of our ward’s programs there is a message. I don’t know if I even read the message on that April 17th, however the message written for that day is quite profound for me, given the trials that were to come over the next days, weeks, and months. There are no coincidences. I felt like the Lord was telling me, “I’m still here. I knew what was going on then and I know what’s going on now. I know you!” It said:
The Church of JESUS CHRIST of Latter-day Saints
St. George 8th Ward
April 17, 2016
The Lord is on Our Side
Men are, that they might have joy.
2 Nephi 2:25
“Let us be of good cheer as we go about our lives. Although we live in increasingly perilous times, the Lord loves us and is mindful of us. He is always on our sides as we do what is right. He will help us in our time of need. Difficulties come into our lives, problems we do not anticipate and which we would never choose. None of us is immune. The purpose of mortality is to learn and to grow to be more like our Father, and it is often during difficult times that we learn the most, as painful as the lesson may be. Our lives can also be filled with joy as we follow the teachings of the gospel of Jesus Christ.
Thomas S. Monson in
A Future as Bright as Your Faith, p. 113
Thomas M. Tuttle, Bishop
Kenneth J. Prior, 1st Counselor
Michael R. Searle, 2nd Counselor
September 19, 2016
Jonah has been working with a home health speech therapist. She has been working really hard to get Jonah’s decibels to a level he can be heard. I have felt as though I should be getting hearing aids because I say, “What Jo?” or “Say it again, I can’t hear you”, at least 100 times per day. She has him do exercises that sound like she is Julie Andrews teaching her charges to sing in the Sound of Music. Sometimes we all burst out in fits of laughter at the strange squeaks, squawks, and horn sounds escaping from Jo’s voice box, as it is revolting from the strain of the exercises. One of the exercises she asked him to do was to say as many words as he could think of that start with the letter “F”. I thought, “What??? Why the letter ‘F’?” But I didn’t say a word. Jo looked at her with that blank look he has and started to say his “F” words methodically, in a semi-rhythmic manner: “Family. . . fruit. . . first. . . fog. . . fresh. . . frog.” Then, as though he were running out of air, he yells (I use that word lightly) out like a machine gun: “FAT, FART, FAGGOT”!!! His therapist snaps her head up and back to look at Jo and with big eyes calmly states, “Well, it started out nice.” We were being silent observers from the kitchen, however we could not stop ourselves from laughing and Jonah then melted into laughs too!!! The girls and I all decided that the T-shirt I am going to have made from this experience would have to have “F-Science” across the front and “FAT! FART, FAGGOT!!!”, across the back. Maybe I can sell these with my book!!!
Jonah has been working so hard to be steadier. He has begun to try to walk around the three sides of his bed. He calls me in to watch him. Believe it or not this practice has made him steadier with his walker. His physical therapist has also been working to steady him as he is going from the sitting position to the standing position. He has worked and worked with Jonah on this and he has gotten just about flawless with standing up without falling backwards. He is incredibly steady as he stands and has few, if any, times when he has begun to lose his balance. He is very good at “righting” himself. Jo said he hates using the walker because the walker only has two wheels and rubber slides on the other two legs. The legs with the rubber slides rattle his head as he is walking; the slides scrape along the walking surface shaking his upper body as he pushes the walker along. I asked if he felt he could steady himself with a crutch. He thought he would like to try so I ran and grabbed a pair of crutches out of the garage to try. The crutch was scary to watch him use. It seemed as though the crutch was “pushing” him over. I watched him try to use this for two seconds and then confiscated the crutch. Tom and I went to Walgreens and picked out a beautiful cane and Jo has been using this for the past week.
Jo wanted to try to drive!! I kept putting him off, but I finally gave in and took him over to the church parking lot behind our house and let him have at it! He did really well with controlling accelerating and parking in parking spots. His turns were wider than they should be and he wasn’t real good about responding quickly with turning his head and pushing the brake. We’ll keep working at it. I think I will assign his Sheriff brother Zach to drive with him and see what he thinks.
I have really been feeling like my body is falling apart, I’m pooped out and exhausted. The aches and pains I get sometimes freak me out. My right leg and right arm begin to ache, shooting pain down and around my leg from my bum to my foot and from my shoulder to my wrist. The pains I have in my gut drive me crazy sometimes. I keep telling myself, “It is stress, relax and you will feel better”. One night as I was praying and thinking, “I don’t have the energy to do anything other than what I have to do to take care of my family. I don’t want to do any other thing I am being asked to do”, I heard the words, “Forget yourself and go to work!!! I will take care of you, and your body!” As quickly as the words came, I was filled with peace and I understood that the Lord was telling me all was well and that as I continue to do as He asks and have faith in Him, I will “run and not be weary”. I will “walk and not faint.” I felt instantly better emotionally.
Holland text me from seminary today to share this scripture that really spoke to her heart: Isaiah 61:3
3 To appoint unto them that mourn in Zion, to give unto them beauty for ashes, the oil of Joy for mourning, the garment of praise for the spirit of heaviness; that they might be called trees of righteousness, the planting of the Lord, that he might be glorified.
The Lord is so good to hear our cries and answer and then make beauty out of our ashes!!!
September 21, 2016
Jo has been practicing and practicing walking without devices. His therapist has spent much time walking with Jo around the block, using a belt to steady Jo as he walks. Today we filmed Jonah walking down the hall of our house without any help devices; no walker and no cane!! He is still a little unsteady, but he has gone from not even holding his head up consistently and being wheelchair bound to this in just a little over 4 weeks. Coming home has been good for him!!!! His physical therapist wants him to see a neuro-specialized physical therapist to begin to “fine tune” and help Jo with the tremors he experiences mostly in his left leg and helping him with the extreme negligence of his left arm. Jo’s friend, Greg calls Jo’s leg his little Finding-Nemo leg (That just makes me smile. It is so true!). Jo rarely uses his left arm and so it just flops on his side. He has strength in both extremities; it is not an issue of that. It is an issue of re-mapping his brain to recognize and then use those limbs. It will be absolutely imperative to use the limbs correctly – not in a compensating manner – in order to map the brain correctly!!
As we left the last rehab facility Jo was in I asked the discharge guy if I could just bypass home health and use those therapy visits in an outpatient facility so Jo would get the equipment he needed to progress. He told me that I could, however if I did that I would be taking away those 30 visits he would otherwise get. I was ticked but I am learning to “play the game” in some situations. The other day while Jo’s therapist was at our home he made a comment that Jo was nearing the middle of his visits of therapy. I told him he must be mistaken because Jo was to get 30 visits of therapy from each discipline of therapy: occupational, physical and speech, with home health. He told me that he may be wrong, but their insurance person had been told by my insurance that Jo only had 20 visits from each discipline, PERIOD!!!! He advised me to call my insurance.
Long-story-short, I found out that SelectMed had made a change just this year (OF COURSE IT WAS THIS YEAR and someone forgot to inform the discharge guy at the convalescent hospital Jo was in last!!!) in how people would receive this benefit. They were now clumping home health therapies with outpatient therapies and giving a total of 20 visits per discipline, THE END!!! This change takes 30 visits of therapy away!!! This meant that Jonah would not be given the chance to go to the neuro-rehab outpatient facility for very many visits!!!! This neuro-rehabilitation is so so critical to getting him back to high functioning. I got so so so mad as I spoke to the woman at SelectMed and ultimately melted into tears on the phone. I honestly couldn’t even speak!!! I wanted to punch someone!!! I was informed that Jo gets just 3 more physical therapy appointments, 19 occupational appointments and 7 speech therapy appointments for the whole rest of the year!!!
Now I see the blessing in having the home health Occupational therapist being lazy because it has given Jo more visits with a neuro-rehab occupational therapist!!! They told me I could try to appeal for more. I told them I had written an appeal for more time in the neuro-rehab facility back in June and they still have not gotten back to me on that appeal!!! There are so so so many wrongs in our medical system!!!! The Lord has provided all along and I have to hold onto the belief that He will continue to do so. I have to stand on this or I will go absolutely CRAZY!!!! Needless to say, I discontinued home health and got appointments for Jo at the neuro-rehab outpatient facility. They are so booked up, his first two appointments are 2 and 3 weeks away!!!
Just after Jo’s accident I was supposed to have my first colonoscopy, as a good health measure. Needless to say, I cancelled and I put that off until today!!! Yesterday I spent a blissful afternoon drinking four liters of what I could describe as thinned out snot. I fortunately have had friends that have gone before me in having this test and gave me some excellent tricks to use to make the drink more palatable. Two days ago I opened the gallon jug and poured two packets of crystal light in before adding the water to the “fill” line. I shook it up and placed the jug in the back of my fridge to get extra cold. By the time I had to start drinking it yesterday there were ice crystals in it and after shaking it all up I was drinking a salty fruity slush! It was still a little intense having to drink 8 oz of it every 10 minutes. I learned to take a quick sip of water after each 8 oz to swish the taste away. I kept myself distracted throughout the ordeal with a sewing project and got through it just fine.
Tom and I arrived at the surgery center at 7:30 AM. I was thankful to not have to think about it too long before. They ushered Tom and I back to a long row of curtained stalls, each having a gurney, and a chair. Within just a moment the nurse was there to start an IV and the anesthesiologist came in to chat. Next thing I knew I was being pushed into a small exam room. One of the male surgical techs asked me if I was the mother of Jonah. He told me he has been following Jo’s story through my blog and asked me how Jo was doing. It always feels good to hear of someone’s care. As I finished my sentence the anesthesiologist pushed a syringe of Micheal Jackson’s death drug into my IV and I don’t remember another thing until hearing, “Everything looked great, we’ll see you in 10 years!!!” Now that was music to my ears!!! Tom had me home and parked on the couch by 9:15 AM and I laid my head down on the pillow and closed my eyes and didn’t wake again until about 5:30 PM. I am really a lightweight with drugs, a little goes a loooong way. Jonah stayed by my side the entire day!!!
September 22, 2016
Jonah has been battling two issues: a sinus infection and a big toe with double in-grown toenails. For the past two weeks I have tried every oil and netty pot potion to try to get the sinus infection under control. I didn’t want him to have to go on an antibiotic right-off-the-bat because he has had so many in the past six months and I didn’t want the antibiotics to roto-rooter his gut again. I just kept telling myself that the minute he becomes uncomfortable I will race him to the doctor. He ended up on anti-biotic and everything has cleared up.
His big toe needed a little surgery and we will be persistent with the aftercare of daily soaks, anti-biotic ointment and wrap to make sure it heals properly and without further issues. I felt so bad for him that he had to have another procedure. As is Jo’s disposition, he didn’t want to have to have one and he was nervous, but he held tight to my hand and was silent throughout the whole thing. His foot doctor was a gem: kind, quick and painless. We were in and out of the office inside of 40 minutes.
One of Jo’s exercises in speech therapy has been to hold out a note, any note, at a significant decibel for longer than 20 seconds. Jonah’s longest time has been 17 seconds. This has been something he has consistently failed. Again, this is an issue of using multiple things in his body, together. We need to increase his lung capacity and then increase his ability to push the air out. And then work with his vocal cords to get volume and his mouth to form the words coherently at a steady speed. Up until now, Jo will start a sentence in a pretty regular manner and then by the end of his thought he is rattling off his words as though they are one long word. He just runs out of air and therefore volume. This morning he had a new speech therapist that was filling in for his regular one. She brought a few fabulous and interesting news articles for Jo to read out loud. She worked with him on his volume and was pretty successful at helping him keep his volume and rhythm at an understandable level using this practical manner to do it. She was also successful in getting him to tell her what each article was about. The most incredible feat that this therapist accomplished was getting Jo to hold out his note in a remarkable decibel of over 60 and length of 27 seconds!!!
Today was Jo’s follow-up with his internist. What a fabulous Brilliant he is!!!! He is so NOT full of himself or his knowledge. He listens and asks questions. He and his nurse were genuinely excited about Jonah’s progress. I didn’t get spanked when I told him I had taken Jo off of all but two of his medications. He suggested that we go to a lower dose of the heart regulator med and slowly wean him off, which is exactly what I wanted. He also agreed that we keep giving him his med for his stomach. Other than these two, he is off of everything.
Jonah has not had a hard time sleeping like they said he would. He has not battled depression of any kind, like they said he would. He has not been annoyingly verbal or have trouble maintaining healthy boundaries and proper social ques. . . and on and on. The only thing that we have noticed is that he has “woken up” more and more. He is more and more like the smiley, giggling, happy-go-lucky Jo that we all know and love (except the occasional argument he has with one of his small nieces or nephews, which can seem a little ridiculous and take me off guard)!!! He initiates all kinds of conversation. He has all of the knowledge he had before his accident and can access it easier than I can recall things in my own brain. He tells me 100 times a day, “I freaking LOVE you mom!! You do so much for me!” And “You are so beautiful mom!”
September 30, 2016
Today was Jo’s mission reunion!! I was so glad that Jo’s mission president was from the St. George area because his reunion is just up the road a bit and was totally do-able. Over the last few weeks I have been trying to figure out someone to go with Jo to this reunion so he didn’t have to show up with one of his parents. At first one of his old mission companions had reached out to us and said he was coming down and would love to take Jo with him, however events with school ultimately interfered with his ability to come. As I dropped Jo off at Institute yesterday, I asked his friend, Greg, if he would be available to attend the reunion with Jo. He said he would be happy to take Jo. Jo has such stellar friends!!! They have stood by him through high school, through their missions and through this accident!!! They are true brothers!!! I have been amazed at the magnitude of their devotion to Jo. Greg came promptly at 4 today to get Jo and they were off! Jo said it was so good to see everybody, especially his beloved president and his wife. All were amazed to see where Jo is in his progress and were a witness to the great miracle of Jo’s healing!! I think he stunned his mission president the other day when he called him and the president heard Jo say, “Hello President, it’s Jonah!!”
President Holm was one of the first of Jonah’s visitors in the ICU within days of the accident. It was President Holm that took Jonah’s stilled comatose hand in his and watched Jo’s entire body jump. Until that moment we had seen absolutely no movement to any stimulation in Jo and wouldn’t for many more weeks after. It was President Holm that tried to explain to me, as tenderly and careful as he could, that it may not be the Lord’s will that Jo live. In response he received my blistering reprove that Jo would not only be healed, but he will be WHOLE!!!! At the time I wanted nothing more to do with him, as with anyone who was a non-believer in what I knew and held on to. Despite this, President Holm continued to visit Jo as often as he could. It has been about a month and a half since he has seen him.
So many times Jonah will just randomly say, with a giggle and smile from ear to ear, “Jesus is just so great!!!! I just love Him so much!!! He just has given me so much!!!!” The other day Jo was teaching me that whenever the word “Lord” is used in scripture it is referencing Jesus Christ and that Christ means, “The chosen One or Messiah”. I feel Jonah KNOWS Christ and he has a very personal relationship with Him!
October 1, 2016
We have entered the six-month point of Jonah’s recovery. I can honestly say that I didn’t anticipate Jonah being and doing as well as he is at this point in time. Every medical personnel I spoke to told me to be prepared for a marathon and not a sprint. What I have experienced, since he has been home especially, is a sprint!!! Jonah has all of a sudden woken up, and moved in lightening speed to gain abilities he once had.
I crack up all of the time because when he is with me people will address me instead of him. They talk above and around and about him instead of to him and then they are shocked that he talks to them in a “normal” manner; with intelligence and clarity. They will ask me how he is doing, so I turn to Jo and ask, “Jo how are you doing?” Jo answers and the look of shock on the inquirer is funny. He participates in Sunday School with astounding and unusual understanding of the doctrine. He has helped give numerous blessings and has stood in on priesthood ordinations. He has given beautifully thought-filled prayers. He talks about wanting to marry and plans for his schooling and career. The other day while we were driving he played the song, “Stand By Me” and said with a smile, “I will sing this to the girl I want to marry and then ask her to marry me.”
We found out that Jo was given credit for the college courses he was taking at the time of his accident. Three of the four professors gave him the grade he had the day of his last class attended, since he was just a week away from finals. WHAT A BLESSING THIS IS!!!! I felt like we had won the lottery as we left his counselor’s office with this news. I have been to the disabilities center at the college to find out what resources will be available for him in the spring semester. I have obtained the documentation of his injury and letter from his physiatrist stating Jo’s special needs in order to gain access to these services. We will meet with his college counselor again in November to register for the classes we decide he will take. He is just 15 credits away from his Associates degree. It is truly miraculous that he is still on target for meeting this first educational goal, with only minimal setbacks!!
I received the letter informing Jo that he was found disabled back to the day of his accident and will receive disability and SSI. When I read him the letter, Jo raised both hands in the air and with a humorous cheesy grin yelled, “I’M DISABLED!!! I don’t know why this was so hard, they just need to come visit me and they could’ve seen I’ve been in a serious accident!” With this assistance he will also have a secondary insurance, which will help with his numerous co-pays. What a relief this has been. I know he will not be on this forever, however this takes a huge burden off of him while he concentrates on his schooling, therapies, and healing.
I am so thankful for the knowledge I already had regarding the goods, services, organizations and programs available to apply for, for Jo, through my experience as a social worker. I know too that angels have gone before us and made “the crooked places straight”. There were many frustrating moments trying to meet the demands of each application, however a way was made to accomplish them all despite Jonah not being able to speak for himself and not having a power of attorney in place for me to act on his behalf. I can’t tell you how many times I thought, “Why in the world would I have ever had a Power of Attorney in place before his accident?” It is certainly something I will consider as each one of my other children reaches the ripe old age of 18 and they are still living with me.
October 4, 2016
I took Jo to the dentist to have his teeth cleaned and x-rayed. I fully expected him to have issues after so many months of little scrubbing of his teeth and throwing up so much. However, his teeth were all intact. There were no cavities or deficits from the constant stomach acid. It made me so excited, I cried!!!! What a HUGE blessing!! I didn’t want the expense of the dental work and I didn’t want Jo to have to endure the work. When his dentist sat down in the chair to do his exam he told Jonah he makes all of his clients memorize this poem: “Dr. Hall says, brush them all!” Jonah repeated that several times that day! Now when I hand Jo his tooth brush to brush his teeth he says, “Dr. Hall says brush them all!” He is such a funny kid!!!
Jonah has been able to spend more and more time away from home. He has attended several DSU Rugby practices, as a coach. He has been out to lunches and dinners and to friends’ homes. He has been having friends over to our house for bonfires in the back yard. He has been putting himself to bed when he has been out late, which means he has to change from whatever it is he was wearing into basketball shorts. He’s been getting out his own cereal and bowl, spoon, and milk. His quality of life skills and activities are improving so quickly.
October 10, 2016
I have been making Jo do typing lessons on the computer to help his hand. He has been able to do the assignments at approximately 16 words per minute with 98% accuracy!! I so am impressed he can do that well.
Jo is now completely off of all of his medications. He is so so happy to not be taking any meds.
So many individuals have come to me and said, “Jo is healed because of the faith of his mother!” Every time I hear that I feel chagrined because I know it wasn’t BECAUSE of my faith, but because it was God’s will and plan that Jonah live and continue to fulfill his mission and work on this earth. I have wondered what another mother, having great faith, might feel like if they were in my same situation and their son was not spared. Would they think that their faith was less than mine? Would they feel angry that they felt they had great faith that the Lord could heal and yet He did not? They may have greater faith than my own, they just didn’t understand that there is another component and that is the will of God. It took my faith in God’s plan being greater than my own, and knowing that His ways are higher than mine, to go to Him and ask Him if it was His plan for Jo to live and be healed, knowing it might not be. It took faith to stand with integrity of faith after we received a conviction of His word that Jo would live and be healed even while we were being bombarded with reports of the opposite outcomes. It took faith that the Lord had Jo in the palm of His hands during those despairing weeks when it seemed the doctors could do nothing to ease the pain and suffering Jo was enduring. It took faith to look up and not around, to reach for my Father in Heaven and stay connected to Him when the natural man inside me was ready to give up. It takes faith to continue to reach for goals that many do not believe possible and yet I am being directed to pursue for Jo.
During this past October 2016 General Conference President Uchtdorf gave a talk called, “Fourth Floor, Last Door,” which puts so beautifully what I have been taught about faith through the trials in my life. He said:“Faith is a strong conviction about something we believe—a conviction so strong that it moves us to do things that we otherwise might not do. ‘Faith is being sure of what we hope for and certain of what we do not see.’
While this makes sense to believing people, it is often confusing to nonbelievers. They shake their heads and ask, ‘How can anyone be certain of what they cannot see?’ To them, this is evidence of the irrationality of religion.
What they fail to understand is that there are more ways to see than with our eyes, more ways to feel than with our hands, more ways to hear than with our ears.
The Apostle Paul encourages us to seek the voice that speaks to our spirit, not just to our ears. He taught, ‘The person without the Spirit does not accept the things that come from the Spirit of God but considers them foolishness, and cannot understand them because they are discerned only through the Spirit.’Faith is powerful, and often it does result in miracles. But no matter how much faith we have, there are two things faith cannot do. For one, it cannot violate another person’s agency.
One woman prayed for years that her wayward daughter would return to the fold of Christ and felt discouraged that her prayers had seemingly gone unanswered. This was especially painful when she heard stories of other prodigal children who had repented of their ways.
The problem was not a lack of prayers or a shortage of faith. She needed only to understand that, as painful as it might be for our Father in Heaven, He will not force anyone to choose the path of righteousness. God did not force His own children to follow Him in the premortal world. How much less will He force us now as we journey through this mortal life?
God will invite, persuade. God will reach out tirelessly with love and inspiration and encouragement. But God will never compel—that would undermine His great plan for our eternal growth.
The second thing faith cannot do is force our will upon God. We cannot force God to comply with our desires—no matter how right we think we are or how sincerely we pray. Consider the experience of Paul, who pleaded with the Lord multiple times for relief from a personal trial—what he called ‘a thorn in the flesh.’ But that was not God’s will. Eventually, Paul realized that his trial was a blessing, and he thanked God for not answering his prayers the way he had hoped.
No, the purpose of faith is not to change God’s will but to empower us to act on God’s will. Faith is trust—trust that God sees what we cannot and that He knows what we do not. Sometimes, trusting our own vision and judgment is not enough.
I learned this as an airline pilot on days when I had to fly into thick fog or clouds and could see only a few feet ahead. I had to rely on the instruments that told me where I was and where I was headed. I had to listen to the voice of air traffic control. I had to follow the guidance of someone with more accurate information than I had. Someone whom I could not see but whom I had learned to trust. Someone who could see what I could not. I had to trust and act accordingly to arrive safely at my destination.
With this kind of faith, though we may not understand why certain things happen or why certain prayers go unanswered, we can know that in the end everything will make sense. ‘All things [will] work together for good to them that love God.’
All will be made right. All will be well.
We can be certain that answers will come, and we may be confident that we will not only be content with the answers but we will also be overwhelmed by the grace, mercy, generosity, and love of our Heavenly Father for us, His children.”
I add to these words my own testimony of these truths!!
October 12, 2016
We have had our first visits with the neuro-rehab occupational therapist. As I sat in the office with the occupational therapist and Jo and I listened to his philosophy on our broken medical system and their emphasis on meeting the minimal levels of quality of life rather than getting an individual to their maximum capacities, it took everything inside me to hold back tears. I was listening to someone with the ability to put my own thoughts and feelings into words and it felt so good and gave me some relief.
He began to explain to Jo that each visit with him was going to be like attending a music lesson. He said something like this, when you want to play an instrument, you take lessons. If all you chose to do was attend the lessons each week and then didn’t take the time to practice that instrument using the fundamentals from each lesson, how good would you become at playing? Coming to your therapies will be the same. You will be given certain fundamentals to take home and practice. Each piece will build on the next, just as it does in music lessons. He went on to explain that to meet the insurance company’s standard of “functional” one must only have to be able to lift one’s arm once or twice. However, if you were a painter it would be imperative to be able to lift your arm hundreds of times in order to remain successful in that meaningful work; therefore therapy should be given to accomplish that. As I continued to listen I knew this guy KNEW!! He understood how important it will be for Jo to get his hand and arm and leg to work normally again and the best part was he believed it will happen, with work, using each part correctly so it maps the brain correctly. WHAT A HUGE BLESSING THAT JO’S HOME HEALTH OCCUPATIONAL THERAPIST WAS A MINIMALIST AND FELT HIS JOB WAS DONE!! It has given us 19 visits with this Brilliant!!!! I would be feeling devastated right now that Jo would not have had the chance to work with this amazing man. I know the therapist will be limited by the insurance also, however he will give us his all while he is allowed.
We only got this guy because the home health neuro specialist that came out to see Jo at the request of Jo’s home health physical therapist (our sweet friend from years ago), called him and told him about Jo and despite not having a slot open to see any new patients, he accepted an appointment to evaluate Jo. Because he has no openings, he has set up the next two appointments to see Jo on his DAY OFF!!!!! We are so blessed!! I am so very very thankful and I know the Lord has gone before us!!!! We will work so hard with what he gives us!
During our last visit, Jo’s occupational therapist told him that he should be doing things like folding clothes and washing dishes along with the exercises he assigned. He said, life can be an excellent therapy for getting skills back, as long as you don’t develop crazy ways of compensating. I wish you could have seen Jo’s face. He has ALWAYS hated doing these chores!!! One of his favorite responses lately is putting both hands up in front of him, with his palms facing out and while making a pushing motion he says, “Whoa, whoa, whoa!” Now a few little chores are a part of his practice regiment! Whoa Jo. Silly boy!!!!
October 16, 2016
Jonah was a groomsman in one of his best friend’s wedding this past Friday night. He had a ball! His therapist took his cane away this past week and he is now walking without any help devices. His therapist did not want Jo developing any bad postural issues by the lean he does with his body using the cane. It is a little nerve-racking watching him walk. We have to remind him to not walk with a stiff leg. It is a little scary for him to walk with a bend to his knee because he doesn’t trust his left leg to carry the weight of his body as he transfers his weight there while moving his right leg forward. Again, this all has to do with mapping his brain with proper, non-compensating, movements.
Jonah was asked to speak in Sacrament Meeting today in his Young Single Adult ward. We all attended. He spoke about the growth that comes from adversity and the purpose adversity plays eternally for us all. He bore his testimony and talked of his love for the Lord. I worried a couple of times because a he would start to get the giggles, and I wondered if he would gain control again in order to continue. His left leg starts to jiggle so severely sometimes it is hard to concentrate on anything else because jiggles his whole body. As he stood to talk, his leg started with the spasms and he apologized to everyone that he was shaking, which made him start to laugh. He looked over at us and then back at everyone and proceeded with his talk. I just marvel at his strength to continue to move on in any circumstance. He has not let one thing get him down!! His answer to everything is, “It’s alright! I’m alright!!”
Here are the points, taught by Joseph Smith, which Jonah shared and elaborated on in his talk:
“[Jehovah] will not deliver us unless we prove ourselves faithful to him in the severest trouble. For he that will have his robes washed white in the blood of the Lamb must come up through great tribulation [see Revelation 7:13–14], even the greatest of all affliction.”
“Men have to suffer that they may come upon Mount Zion and be exalted above the heavens.”
Trust in the Lord
“The power of the Gospel will enable us to stand and bear with patience the great affliction that is falling upon us on all sides.”
“My only hope and confidence is in that God who gave me being. … He is my comforter, and he forsaketh me not.”
“Having confidence in the power, wisdom, and love of God, the Saints have been enabled to go forward through the most adverse circumstances.”
“Stand fast, ye Saints of God, hold on a little while longer, and the storm of life will be past, and you will be rewarded by that God whose servants you are.”
George A. Smith once received counsel from the Prophet: “He told me I should never get discouraged, whatever difficulties might surround me. If I was sunk in the lowest pit of Nova Scotia and all the Rocky Mountains piled on top of me, I ought not to be discouraged but hang on, exercise faith, and keep up good courage and I should come out on the top of the heap at last.”
I Love my BOY!!! #JustWakeUpJonah.com