We Were Given A Gift...

One year ago today my life permanently changed. I no longer had my husband and the father of my children with me on earth. His broken body couldn't function here anymore and he went on with another chapter of life. The day Jonas died was the worst day of my life. It feels foggy, yet clear at the same time. I can't recall some things, but others will stay in my mind forever. Maybe one day I will be able to write about that day, but for now I still keep it hidden in my mind. Death was not a peaceful experience for me. It was horror and chaos. Jonas dying that day was not expected. Some people seem to think that I knew it was coming because of how sick he had been. I had thoughts that he might not make it for very many more months, especially after the doctors told us Jonas needed a liver transplant in order to survive.  I don't think I ever believed it. How could I accept the idea that my husband was going to die? To accept it would mean I was giving up hope. I never wanted to loose hope.

After that painful, horrible, rotten day, my boys and I had to figure out what our new normal was. Everything had changed and nothing seemed fair or right. I started seeing a counselor about a month after Jonas died. My mom was the one who suggested I go talk to someone and I will be forever grateful that I did. She helped me cope with some of the hardest days and nights I had ever experienced. Loosing someone you love and care for deeply brings an actual physical pain to your heart. I remember some nights crying and sobbing and actually feeling that pain. A broken heart is not a figure of speech. It feels exactly how it sounds. It hurts!

I had spent the last three months caring for Jonas. I was his nurse, his wife, his support, the mother of his children, and the one who had to be strong. I had to prepare his TPN every day, make sure I was home at certain times to give him his medications, figure out what to feed him, and be available in the evenings to hook him up to his IV antibiotics. It was exhausting and stressful, but I was so busy doing so many things I didn't notice. I didn't notice until I didn't have to do it anymore. One day I was everything to someone and the next day I was nothing. I was no longer needed. What was I going to do with all this time? I missed doing my job. I wanted to be a nurse and a wife again. I wanted Jonas back. I wanted all these things, but I couldn't have any of them. How could I possibly go on with life?

The answer was simple. My children. My three handsome boys. I am so lucky and blessed to be the mother of Sam, Ben, and Jack. God knew I would not be able to do this alone. He knew I needed three strong personalities to keep me jumping and busy everyday. God knew I would let myself wither away in bed if I could. I was sent these three amazing boys to help me. They are the reason I get up every morning and they are the reason I can still smile. They have no idea how much I need them. I hope they realize one day that they saved me.

During one of my sessions with my counselor I was talking about the time we spent at the Mayo Clinic in 2008. I was telling her that the doctors were calling him a medical mystery and that they were having a hard time knowing how to help him. I don't think I mentioned this in my medical history post, but one of the doctors told us that starving bodies will take nutrition out of every muscle and bone it can. The last place it takes nutrition from is your temples. Joe's temples had been sunk in at one of his appointments and when the doctor saw that he really didn't think he was going to make it. Of course, he didn't tell us that at the time, but only after Joe had started doing better. There were two doctors that had told us (after he was doing better) that they didn't think he was going make it and another doctor at the Mayo Hospital that said it was in God's hands. I am sure there were many more doctors that were thinking the same thing.

After I finished telling my counselor this she looked at me and said, "you were given a gift." I just looked at her not really understanding what she meant. "Heavenly Father knew you were not ready to let him go in 2008." I was thinking in my head...I am not ready in 2011 either! But as we sat and talked some more I started to realize that she was right. (Not that I was ready in 2011, but that we had been given a gift.) We were allowed to keep Jonas in our lives for a couple more years. Jonas was here for the birth of our third son, we were able to go on family vacations and family outings, we were able to have two more years to make memories. We had two more years to learn, grow, and become a stronger family. The strain on a marriage when someone is chronically ill is tough. The stress since mid 2007 was taking its toll on us and we had grown apart. By the summer of 2008 we were doing much better. We were finally able to work on "us" and had fallen in love all over again. It's very true that you have to continually work on your marriage to make it work. I think in every marriage there will be times when you grow apart, but you have to keep working on the "us" part so that you have the wonderful experience of falling in love again and again with your spouse.

Now, had I known the next two years were a gift I would have done things SO MUCH different, but, you know...we aren't supposed to go there. So I try not to. Things really were good between me and Joe. Better than good. They were as perfect as they could have been. We loved each other and we loved our children. Yes, I wish we would have had the "if I ever die" talk and I wish I would have video recorded him more often. I wish he would have had the chance to write letters to our boys and let them know how much he loves them and how proud he was of them. He loved being their daddy. I wished I would have known (or realized) that his time was almost gone and that I would have had a chance to tell him once more how much I love and appreciate him. But I try to remain grateful for the years I had with him. I try to stay positive for my boys so that they can have a happy childhood. I know I will see Jonas again and I dream about that awesome reunion we will have one day. We are so blessed to have a loving Heavenly Father. He blessed us with our Joe for two extra years. I will forever treasure the memories we made. When I am having one of those hard nights I will try and remember that because I am loved, I was given a gift.

Joe & Sam 2003

Joe & Ben 2005

Joe & Jack 2008

The Final Medical History

To see previous medical histories click here.

On January 12, 2011 Jonas was admitted to the hospital again. They admitted him for severe swelling, fatigue, and a continual high bilirubin count. This hospital stay was different though...he actually seemed to be doing better after a few days and we left feeling hopeful. That didn't seem to happen at the end of very many hospital stays. He started seeing a physical therapist during this visit which seemed to help him a lot. When he was discharged on January 16th we set up appointments to continue with the physical therapy. He had started to feel so much better and the bilirubin count was coming down. On our way home from the hospital he wanted to visit all the guys at work. It was so good for him to go there and visit with his co-workers. He had been home from work since mid November and it made him feel so good physically and mentally to go out and be able to visit people. He was even feeling good enough to ask if there was work that he could do at home. It was a very positive day.

A few days later Joe heard from his boss at work and because of legal issues with Jonas being on short term disability he was not able to do any work from home. I think hearing that news was really hard on him. He felt so useless at home and was going crazy with not being able to do anything all day but watch movies and sleep. He had finally started to feel better and he desperately wanted to work. But Joe was a fighter. He did his physical therapy exercises every day and never gave up hope that he was going to get better.

 On January 28th we got some more positive news. His liver doctor had found a stone blocking one of his bile ducts and thought they maybe it was the stone causing the bilirubin to stay in his body. His hope was to remove the stone and then have the bilirubin free to leave his body. Dr. Hutson was excited, Jonas was excited, I was excited, it was a really good day! On the way home from that appointment we talked about how in a few months Jonas would be feeling so much better and would be back to work and back to his "normal" life. We were feeling so hopeful and so happy on that drive home. The next day Jonas went in to have the stone removed. I waited in the room with Joe's mom and when they brought Jonas back in from the procedure the first thing he said to me was, "there was nothing there." I thought he was joking. I said, "you're kidding" with a smile on my face. He said in a very sad voice...."there was nothing there, they found nothing". I just looked at Kathy and we didn't know what to think. I don't think we understood what he was saying. Then the doctor walked in and told us that when they went in with their scope they had found nothing. Sometimes MRI's can show artifacts or "ghost" images on the film.  What Dr. Hutson had seen on the MRI was one of those artifacts. There was no stone to remove. There would be no bilirubin leaving Joe's system. There would no getting healthy in the next few months and moving on with our life together. It was a heartbreaking and frustrating day. We were devastated. Joe felt defeated. 

Things really went downhill after that day. Jonas had become very depressed and spent most of his time sleeping. I don't know if it was the sadness that kept him asleep or that his body was dying and God knew he wouldn't be able to deal with that. Either way, it ended up being a huge blessing that he spent his last three weeks sleeping most of the day. 


On February 14th Dr. Hutson fit Jonas into his schedule to see him in clinic because of how poorly he was feeling. I was helping at Sam's Valentines party in school so Joe's mom and my mom took him to his appointment. I knew he would be admitted to the hospital because he had become so much worse in the past two weeks. 


Notes from Dr. Hutson's report of his visit with Jonas on February 14, 2011:
"Jonas returns today for follow up of an autoimmune induced cholangiopathy (a disease of the bile ducts). He is being treated with IV Solu-Medrol for the last eight weeks and cyclosporine was added two weeks ago. He has continued to have a downhill course. Over the last several days, he is no longer able to walk on his own volition. He has nausea and is unable to eat. He has been having abdominal distension and his ascites is worse. His energy has been very low and every time he eats, his stomach feels more bloated. He has not been having any fever or chills at home, but he has become quite lethargic and his wife states that he has become confused at times as well."


"Jaundice most likely caused by an autoimmune cholangiopathy with destruction of the bile ducts. He is currently on IV Solu-Medrol and cyclosporine in an effort to treat this condition. There are no similar patient reports available in the literature. He also has had a downhill course physically since he was last seen.

On the 15th Jonas ended up in ICU for 24 hours because of a paracentesis procedure they had done to try and drain some of the fluid in his body. He developed a site bleed which they had a hard time getting stopped. They ended up replacing 2 units FFP, 1 unit platelets, and 4 units PRBC transfusion. That was a ton of blood! What is so frustrating about this is that I didn't even know it was happening! No one ever called me! I got a call from my sister in laws mom who works in the pharmacy at the U of U Hospital. She was calling to see why Jonas had been moved to the ICU and she wanted to make sure I knew he was there. Well, I had no idea! I was so glad she had called and told me. I was so upset and thinking about it right now is actually making me ticked off. I, of course, didn't say anything to the doctors. I am not a confrontational person and just told the doctor it was ok when he apologized for not being able to reach me. He said he a tried and had a wrong number (whatever) but, thinking about it now I should have yelled really loud at him and made a big fuss about it. That was horrible of them to not let me know that my husband was needing a blood transfusion and was in the ICU. I am ticked!

On Thursday February 17th Joe's team of doctors came in and told us that they had done everything they could but felt that in order for Jonas to get better he would need a liver transplant. They also said that he would not be able to get a liver transplant unless they could determine if he did or did not have the M. Kansasii infection. If he still had the infection he would not be a candidate for a transplant. I remember hearing what they were saying and looking at them every now and then but I was mainly focused on Jonas and what he was doing. At this point he was very confused and wasn't really aware of what the doctors were saying. He had a build up of (something that I can't remember the name) in his blood stream that was causing his confusion. I remember watching Jonas try and open a straw and put it in his cup. It was so hard for him to do and I was so worried about him and why he couldn't do such a simple thing. I don't think what the doctors were telling me really sunk in.


On Friday Joe's doctors told us they would like us to meet with the Palliative Care team. Now, I guess I was the confused one at this point because before the doctor mentioned palliative care he was talking about physical therapy and seeing if Jonas would qualify for the rehab program. Then he started talking about palliative care. So when the palliative care representative came in and started telling us about what they do and when we could set up his appointment we (me, Jonas, Kathy, Denny, & Melissa) were all a little shocked. This is what palliative care is:

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

She started talking about what decisions we would need to be making if Jonas became worse and what his wishes would be. I think we were all speechless. We thought he would be getting physical therapy and she was talking about what Joe's wishes would be if he were to get worse... 

We initially set up the meeting for the next day which was Saturday, but I called back that night and told her we wanted to change in until Tuesday, February 22nd (since Monday was a holiday) she said that would be fine. There was no hurry.

So we got through the weekend and Monday with not much change. Jonas was usually asleep when I was there. I think it was on Friday that I told Jonas what the doctors had said about his liver. I tried to make him understand so that he would knew what we were up against. I told him he needed the liver transplant or he wouldn't make it. He said "OK". But thats all that was said. We talked about how he would get stronger with physical therapy and that hopefully he could get the transplant. We still had hope. There was no talk of death or "what if's". In fact, we had never in our entire marriage talked about death. It was just something that Jonas couldn't talk about. It was too hard for him to think about let alone talk about. I left Monday night thinking I would be back the next afternoon to talk to the Palliative Care team. We would talk about what they would do to make him stronger and what tests they would do to determine if he still had the lung infection. We were going to discuss if Jonas should be moved to a Skilled Nursing Facility until he got strong enough to come home. But none of that took place. I wish I would have never left the hospital that night. I wish I would have stayed there all night holding his hand telling him that I love him.

Our last picture together...taken on February 18, 2011

The Angels Who Welcomed Jonas Home

Sometimes late at night when I am at my lowest, one of the only things that comforts me is knowing that Jonas is not alone. He is surrounded by people who love him and by family members that he never had the chance to meet here on earth. What a glorious reunion he had!


 He was greeted by his brother-in-law, Jesse Person. Jesse married his high school sweet heart Melissa Webster when Jonas was on his mission. They married in October of 1995. Jesse was an amazing man. He was kind and thoughtful and one of the things I remember most about him is how respectful he was to everyone he met. He was such a gentleman! Maybe he learned that from getting through boot camp and becoming a United States Marine, but I am pretty sure Jesse was always that way! Everyone loved listening to Jesse's stories. He was so animated and he had the BEST laugh! I can still clearly hear that distinct "Jesse" laugh. It is unforgettable! We miss him so much. He was killed in a car accident on February 11, 2002. Ten years ago today. What a horrible time that was. I remember everything about that day and I sometimes wish I didn't. It was horrible. He left behind his beautiful wife Melissa and their two sons; Jordan, age 5 and Davin, a month away from turning 2. Melissa was 14 weeks pregnant with their daughter Briauna. Jonas and I named Ben after his uncle Jesse.....Benjamin Jesse Webster....we were both so proud to have Ben carry on that name. I imagine Jonas and Jesse are having a great time discussing history together and enjoying each other's company in the grand library I imagine there is in Heaven.

Jonas was also greeted by his Grandpa Fred Todd and Grandma Veryle Todd. They are Joe's mom's parents. Now, those two were a crack up! They were always saying the funniest things...even if it wasn't the most appropriate of a comment at the time....yeah, they just said it how it was. Tactful or not! But they were very caring and loving and were always so concerned about how each of their children and grandchildren were doing. Jonas and his Grandpa Todd enjoyed talking physics together. They were both very smart and had some long physics discussions together. I am so glad Jonas gets to be with his Grandma and Grandpa again. Now they can talk as long as they want about physics and I am not there rushing Joe out the door! (In my defense....have you ever sat in on a physics discussion?!?) :)

He was greeted by his Grandpa Byron Webster. Joe's Grandpa "Bud" helped us with so many projects over the years. He knew how to fix anything! He was always so kind and willing to help us. Jonas always looked forward to the times he spent with his Grandma and Grandpa Webster. Over the years, we had many BBQ's and holiday dinners with the Webster family and I always enjoyed the time we spent there. Bud died in November of 2010 just 3 months before Jonas. His funeral was the last time people saw Jonas before he got really sick. Bud left behind his sweet wife Alberta. We love her so much and we miss our Grandpa Bud!

Jonas was greeted by one of his best friends Ryan Furness. They went to school together, were on the Taylorsville swim team together, mountain climbed together, and had many good times together. I remember when we heard the news that Ryan was in the hospital. One day he got flu like symptoms and a few days later he was in the hospital and never came home. I remember going to the hospital to see him. He was in a coma and they didn't know what was wrong yet. Later they found cancer in his stomach, but I remember how sad his wife was. They had one young boy and I remember feeling so sad for her. It was a very hard time for Joe. Now Jonas and Ryan can climb, swim, and camp all they want. At least I hope they get to do that in Heaven!

I am so thankful for these wonderful angels that were there to greet Jonas. He also had cousins there, great-grandparents, my grandpa Leary, my uncle Denny and my uncle Al, and many more that I am not even aware of. Thank you so much for taking care of my Joe. Thank you for being there to welcome him home.