A tender mercy

My little Ben had no problems playing at friends houses, going to birthday parties, going to Kindergarten, riding the bus.....he did it all....he was happy and had friends and was having fun. It all changed two days after school resumed from the Christmas break. Two days after going back to school in January 2011, something happened to Ben. His teacher called me about 10:00 AM. He had been crying and hiding in the corner of his classroom since he got there at 8:45. I went to pick him up and thought maybe he was getting sick. He said he just missed me. He didn't want to go to school the next day but, I tried to make him. He would not get dressed. I tried to force his clothes on him. It was not possible with his kicking and screaming. I did not understand what was going on. 

After some attempts at leaving him at school unsuccessfully....one where he cried in the principals office for two hours, I told him I would sit in class with him if he would stay and do his work. I didn't realize then that I would be doing that the rest of the year! My wonderful mom helped me out so much by rotating days with me so that I didn't have to go to Kindergarten every day. 

Ben couldn't do anything by himself anymore. He wouldn't go to friends houses, to birthday parties, to primary, to grandmas or cousins. He was such a different kid. It totally freaked me out. With Jonas so sick at home I did not have the energy or desire to really deal with the situation. So I just did what was best for both Ben and I at that time. I went to Kindergarten. As time went on we (my mom and I) were able to move to the back of the room and then out to the hall. I seriously can't believe we did that every day from January until June!

My mom and I also sat in primary with Ben every week. I would sit in sharing time with him and she would sit in class with him so that I could go to relief society. Don't I have the most amazing mom?! I got Ben into therapy in March and by the time June rolled around I was already dreading what would happen when first grade started in August. I told Ben all the time that moms and grandmas were not allowed to go to first grade, but I was positive I would have to leave him screaming in the arms of his teacher every day. 

I started to notice little changes through the summer. He was getting braver. He was becoming a little more outgoing. Two weeks before school started we were at church and his primary teacher asked if he wanted to go with her to class. He pulled on my arm and I just told him to go and I would come in a few minutes. To my utter shock he went!! I could not believe it!! I expected at any second that he would turn around and come back to me, but he didn't. I waited ten minutes and then went and sat in the back of the sharing time room. He kept looking back at me but never came to sit by me. After about 10 minutes I left. They never came and got me! He stayed and then went to his primary class. It was a miracle! A tender mercy. Oh how I needed that! After class got over and I saw him in the hall he just ran and gave me a big hug. I was so proud of him! He said to me, "mom, I just felt like I could do it." Oh that little sentence just melted my heart.

The next week in primary he did it by himself again! I was hoping that was the confidence booster he needed to go to school by himself the next day. Monday morning came and I was so nervous. Ben was also acting nervous, but said to me that he thought he could do it. He agreed to go on the bus and I said I would meet him there to take him into class. 

 When he got to the bus stop that morning there were people from our neighborhood cheering for him. It was so cute and he was "totally cool" with all the attention.

 He was smiling when he got off the bus! YEAH!!

He sat at his desk and was so excited when he saw some of his friends from Kindergarten in his class. He didn't cling to me or even act like going to school by himself was a big deal. He acted like an old time pro! I am so proud of you Ben! You are awesome!! I love you so much and I know your daddy is so so proud of you too!

I don't think I did Ben's accomplishment justice in this blog. I don't know how to describe how amazing this was that Ben was going to school by himself. It would take way too long to go into detail about how horrible those 7 months were of Ben not being able to do anything by himself anymore.  They were long and hard, but he is back. My Ben is back! 

Maybe I should...but I probably won't

Maybe I should go to bed at a decent hour every night so that I can feel better when I get up in the morning...but I probably won't.

Maybe I should exercise every day to help me loose the inches and pounds that keep showing up on my body...but I probably won't.

Maybe I should stop pretending that everything is fine...but I probably won't.

Maybe I should focus on one project at a time so that I can actually get something accomplished and crossed off my massive to do list...but I probably won't.

Maybe one day my heart will actually believe and accept that Jonas is not coming home...but probably not.

Maybe if my entire house gets de-cluttered and organized my mind will feel de-cluttered and organized...but I am not counting on it.

Maybe the next time I watch a Utah football game it won't make me miss Jonas so much that it makes my heart and head feel like they will explode...but I probably just won't watch another one.

Maybe one day I won't hate the thought of going to bed each night without Jonas....doubt it.

Maybe one day I will stop turning to chocolate for comfort...probably not!

Maybe one day I will feel joy again....wow, that's an interesting thought....joy.....what's that?

Maybe I should figure out what to do with the rest of my life and focus on my future and stop grieving for the past....yeah, right....that's what someone with a "focused" mind would do.

Maybe I should not blog at 2:00AM because they end up being too depressing to read...hmmmm....

Maybe I should just go to bed....

Happy Birthday Joe!

It only takes 4 generations of Webster men to start a fire! ;)

Yup, another hard day.

You don't realize how many "special" days there are during the year until the one person you want to be with on those "special" days is gone. Our boy's birthdays, our wedding anniversary, holidays (lots of them), Joe's birthday, my birthday, mother's day, father's day.....there are so many days to celebrate with the ones you love during the year!

We have had a tradition of going up to the canyon to celebrate Joe's birthday with our families. I think we have been doing it every year since we got married. There was one year that we missed and everyone was so disappointed that we didn't do it that we said we would never miss again. We all enjoy it so much. In the beginning years, (when I was really ambitious), we would cook a dutch oven dinner and cobbler. After a few years, I switched to just making dutch oven potatoes and cobbler. The last two or three years I have just been doing the peach cobbler and I have everyone bring up their own dinner. I guess I have become less ambitious over the years (or smarter?) but it is so much easier to just do the peach cobbler rather than the whole meal! Plus, everyone LOVES the peach cobbler so I think it works out okay.

I wanted to continue with our tradition this year, so last night we all met up at Mueller Park canyon for dinner and peach cobbler. The cousins always have so much fun together playing in the creek and getting filthy! I remember going to Muller Park canyon with my family when I was younger and it was always so much fun. I am so glad my kids get to go too. We always roast marshmallows and have a great time visiting with each other.

Sam is showing us his battle wound....umm...scratch...

Since Jonas wasn't going to be there (physically) to open his presents and for us to sing to him, I had everyone bring up balloons to send to Jonas. I got this idea from my friend who also lost her husband just over a year ago. (Thanks, Mandy! I tend to "borrow" lots of her ideas because she always has such good ones.)  My boys were so excited to send birthday balloons to their daddy. I think everyone was excited to do it. We wrote messages on the balloons and sent them to heaven.

Unfortunately, a rainstorm came through right before we released the balloons and the mylar ones I had brought wouldn't go up. They just kind of floated off to the side. So we gathered those ones back up and took them to the cemetery today. I was relieved when Sam and Ben said they would be fine with that. They got to send up a latex balloon instead so that made them happy. Jack never wanted to let his balloon go, but he did leave it at the cemetery today for his dad.

When it started raining Sam got sad that it ruined daddy's day and possibly smore making...

The rainstorm didn't last very long and we got back to making our peach cobbler and roasting marshmallows. I was so grateful the storm passed through quickly. Sam was so upset when it started to rain. He came and whispered to me through tears that daddy's day was ruined. I was so sad to see him this upset. But, it wasn't ruined. The rain stopped. We got to make our smores and send our balloons to heaven. As we were getting ready to go home, Joe's nephew Jayden (who just turned two) wanted to sing happy birthday. So we sang happy birthday to our Joe. Thanks for having us sing Jayden!

Who's two year old is holding a box of matches?!

When we were driving to the cemetery today Ben said, "I think dad caught all the balloons from his party."
Sam said, "me too!"
Jack said, "me too!"

Happy Birthday Joe. It was so different being up in the canyon without you. I miss you so much. My heart aches to see you again. You are always on my mind and forever in my heart. I love you!

Mayo Clinic part 1

This is going to be a very difficult post to write. All I did was type the title and then burst into tears. I don't remember crying very much when I was in Arizona. I guess now I realize that this was pretty much the beginning of the end.  And it sucks.

You can read Joe's medical history part 3 here

We left Utah on April 1, 2008 to go to the Mayo Hospital & Clinic in Arizona. Jonas was so sick at this time. I could see all the bones in his back.....it was so sad and so awful. He had lost most of his muscle and could barely walk. His face was pale, his cheeks were hollow, and his eyes were sunk in. Seeing my husband like this was heartbreaking but also so scary. He was my protector, our family provider, my sweetheart, my best friend.....I felt helpless and so very very alone. This is the last picture I have of Jonas before we went to the Mayo Clinic. This was taken March 16th and we left April 1st. He weighed around 120 lbs in this picture. When we arrived at the Mayo Clinic he weighed 108 pounds!

For some reason I can't remember what it was like at the airport in Salt Lake but I do remember the plane ride. I felt like I was in a constant state of heightened alert. Every bump the plane made I worried it was hurting Jonas. I couldn't stop watching him. I was worried he would have a diabetic seizure or pass out from pure exhaustion. When we arrived in Arizona we had to walk up a ramp. I do not know how Jonas made it. I am pretty sure he was being carried by angels. We walked off the ramp into the airport....he was breathing so heavy....his body was shaking. He needed to sit down, so I told him I would find a wheelchair. I found someone to bring him a wheelchair, we got our bags, and went to the shuttle pickup. I remember when the guy brought the wheelchair to Jonas that it was so hard for him to stand up and move to the wheelchair. I have a vivid memory of Jonas collapsing into the wheelchair. He had no strength left.

We arrived at the hotel and every move Jonas had to make was a huge effort for him. He made it off the shuttle, I checked us in, and he immediately went to bed. I was so stressed about what I was going to get Jonas for dinner. Everything he ate went straight through his body. Nothing sounded good to him. I think I forgot to mention that before his hospital stay at the University of Utah in March we had gone to see a doctor at Salt Lake Regional hospital. He had done an endoscopy on Jonas and thought he had celiac disease. It had not been confirmed yet, but also not ruled out, so Jonas was trying to avoid gluten at this point. He was also avoiding dairy because it seemed to make him worse. So no gluten and no dairy....seriously.....this rules out a great deal of food. I felt so helpless. I felt so incompetent. I did not know how to care for my husband and it was a horrible feeling.

We had to be at the Mayo Clinic at 8:30 AM the next day. I don't know what I was expecting when we got there but definitely not that. I guess I thought we would be checked in and he would be staying in a hospital. Wrong. We met with an internal medicine doctor that looked over Joe's medical records, I told her his story, and she did an exam on him. She then told us to go down to the lab to get blood drawn and then to come back to another area to get our schedule. She would be working on making appointments for us for various doctors over the next week. All the doctors were located in the Mayo Clinic building but we would not be checked into a hospital. We would have to travel back and forth each day from our hotel to the clinic on a shuttle. I was so upset. I knew Jonas was not going to be able to do this. He was too sick, too weak, too stressed, too frail. I felt like the weight of the world was just thrown at me. How were we going to do this?

It took a long time to get blood drawn because Joe's veins were so bad. They had to first give him fluid because he was severely dehydrated. After many times of trying they finally got a vein and took 18 vials of blood for various tests. We went and picked up our appointment schedule and were both very upset when we found out they were having a hard time getting an appointment with the immunologist. (Remember that in Utah they had told us that the immunologist was the doctor that needed to figure out what was wrong with Jonas and he couldn't be seen until May.) Hearing the news that the immunologist was hard to get into at the Mayo too was almost more than Jonas could take.

I had to push Jonas in a wheelchair to his appointments. I remember how hard that was. I had to carry our laptop, my heavy bag, Joe's diabetic bag, and push a wheelchair. It was tough! I have vivid memories of pushing Jonas in his wheelchair. The hallways were so long. I remember that we got off the elevator on the wrong floor a few times and couldn't find some doctors offices. We had to wait for an hour sometimes to see a doctor. Jonas was as ornery as a bulldog! (Not really sure if bulldogs are ornery, but I thought it sounded good.) I remember we had about a two hour wait for one of our appointments and I took Jonas to a waiting room that had recliners for the patients. I got him settled in a chair and covered with a blanket. The room was dark so that the patients could sleep so I went to the waiting room next door and tried to concentrate on checking my emails. But, I was always so worried about Jonas and if he needed me or if he was ok. Being at the Mayo Clinic was really really stressful!


Traveling back to the hotel that night was really hard on Joe. Every bump the shuttle hit, every turn it took seemed to cause pain for Jonas. He had to sit with his eyes closed and concentrate on not throwing up or passing out. We got back and he just wanted to sleep. I went and got him some soup which he never touched. He threw up a few times that night. I didn't know how we would get through another day.

The next morning we had to get on the shuttle again. It was another awful experience. When we arrived at the clinic Jonas got back in his wheelchair and we began the process of finding doctors offices and waiting for our appointments. I think Jonas had a cat scan that morning and then doctor appointments in the afternoon, but I don't remember which doctors we saw. I think it was later in the afternoon when I decided to call the internal medicine doctor that checked us in and was coordinating all of his appointments. I told her nurse that I was real worried about Jonas and to check his blood work to see what his potassium levels were at. They said they would call me back.

She called me back about an hour later saying that his potassium level was 2.6 and to go to the Mayo Hospital ER. Normal was about 3.5 to 5.0. If your potassium gets too low it can cause severe effects on the heart, nerves, and muscles. We had to take a shuttle to the hospital. I don't remember much about the ride over there and I don't remember if we had to wait very long to be seen at the ER. I do remember that after some blood work was done they found that his calcium and magnesium levels were also low. They gave him some IV supplements and were monitoring his heart closely because his heartbeat was very irregular. At 3:00 AM, after another blood draw, his potassium had dropped to 2.2 which was the lowest it had ever been. They gave him IV potassium supplements and then admitted him to the hospital.

I. was. so. relieved.

I felt some of the weight being lifted off my shoulders. I could breath a little easier. He would now be under the constant watch of nurses and doctors. They could figure out how to nourish him. They could get him to the bathroom when he was too weak to do it on his own. They could worry about the fact that he looked horrible and that he may die at any moment. I could now just focus on being strong and positive for Jonas. I would continue to be the unemotional mess I really was. I would not let Jonas see me cry. I was calm and collected on the outside. I pushed down my fears and never found my tears. I am so sorry Joe. I am so sorry I couldn't take care of you.

Yellowstone 2011

I am having a real hard time making myself write about our experience at the Mayo Clinic & Hospital. I don't think I have ever dealt with the emotions I had during that time and it's really hard to go back and face them. I am trying though. I hope to get that post done soon.

We went camping in Yellowstone with my family at the end of July. The kids had a blast and I had my moments of enjoyment. It was really hard being there without Joe. The week before we left was exhausting! Preparing a packing list, locating camping gear, grocery shopping, packing, stressing about what I would forget, more grocery shopping, finding items to entertain the kids in the car.......it was all so overwhelming and I was exhausted the night before we left. The tiredness never really left me during the vacation and I started to get sick. By the drive home I had laryngitis, a bad cough, and a cold.

Our hike to the upper falls. How was it? Ben HATES walking. Can you envision how pleasant the hike was?!

Swimming in the lakes and rivers were always a highlight. 

Kyle, Kaleb, & Ben were checking out the elk across the river

I sit and wonder if I will always feel this worn out and drained after our family vacations. I want my kids to have fun memories in their childhood and I don't want them to miss out on things because they don't have a dad to take them camping, fishing, rock climbing, hiking.....all the things Joe loved. But I wonder if I can really do it? It's hard. It's exhausting. It's just not that fun. Which makes me very sad because I enjoy being in the outdoors and I think all those things I mentioned "used" to be fun. I want them to feel fun again....but it is SO hard doing it alone! (Yes, my family was so awesome to help me out the entire time but......you know......I just needed Joe there). Thinking about going on another camping trip sounds miserable and that REALLY REALLY makes me mad that I feel that way! 

Jack loves the bugs to crawl on him

Ben learned how to skip rocks. It made him so excited!

Sam was thoroughly entertained by burying and smashing ants at the lake

I don't want to sound like I was miserable the entire trip because there were plenty of times when I was having fun and enjoying the outdoors. It just wasn't the same. Nor will it ever be the same and that totally sucks. BUT......my kids had lots of fun and for that I am truly grateful. I sure love my boys. I COULD NOT get through this without them. They bring laughter and smiles to our home. They make their mom get out of bed every day and because of that they are my guardian angels.....along with a push and shove from Joe here and there.

Ben's always happy when he gets to help with the fire....

Smores were a HUGE favorite of everyones! I definitely had my fair share of smores. Seriously. I just love me some smores!

Jack is happiest when he is creating. Creating HUGE messes.

 Ben discovered this elk above our camp ground. He came running back to camp saying he had found a moose! The kids were all so excited (along with the adults) we all walked up to check out our moose. She was a cute little "moose" or ummm elk. Sam cracked me up when I told him to turn around so I could take his picture. He isn't smiling because he is so afraid to turn his back on this ferocious beast!

My boys love to fish. Well.....they love to fish when they catch a fish.....(that did not happen on this little evening trip). They were disappointed we didn't get to cook some fish on this trip. Sam and Ben could eat fish for dinner every night if I let them. They love it!

My boys are so lucky to have Dan, Kyle, Phillip, & my dad to help them with all those things that their mom is just not that good at. Thanks grandpa and uncles!! You guys are the best. We sure love you.