Light

AMERICA’S GOT TALENT — “Live Finale” — Pictured: Evie Clair — (Photo by: Trae Patton/NBC)

Thank you for lighting up social media last night with Evie Clair. I was reminded by a friend that Clair means light and in some languages it means famous. Both seem appropriate for sweet Evie Clair. She has been a light to me through the darkest days of my life. She is a leader who only watches her own lane unless there is an opportunity to lift someone else. She reminds me of my mom and grandmother who also have the name Clair.

Tonight Howie also spoke of light. After her performance he said…

“Before I tell you what I think of that, I just wanna say that our hearts and our souls go out to you, Evie. I know that your father passed this week, and I cannot believe the strength that I’m seeing in such a beautiful young girl, and this is a very dark time in your life, and we all go through dark times. What gets us through is hoping and praying for that light at the end of the tunnel and your voice, and your song, and your presence here is that light at the end of the tunnel, so thank you so much.”

Mel B: “Well first of all, you look absolutely stunningly gorgeous tonight. You really, really do, and I know your dad’s up there looking down and you must be so, so, so, so proud because what you just did was beautiful. It was so pure and so raw, just well done. Well done, seriously.”

Heidi: “Well I can’t even imagine what you and your family must be going through right now and I just wanna say that you’re one brave little young lady and one amazing singer, and we loved having you here and I wish you all the best of luck tonight.”

Simon: “Evie, I’m not gonna judge you. I am going to send you, or tell you how much I respect you, how much strength you have. This was a perfect tribute to your dad. Just the fact it was total silence means that everyone was listening to you. Your voice was beautiful, the song was beautiful, and I am very proud of you, Evie, for what you’ve just done and you’ve given yourself a shot for tonight, congratulations.”

Simon pulled Evie into his dressing room before the show to acknowledge a thank you card she had given him for the funeral flowers. She has found Simon to be such a kind person through this whole experience. Maybe being a father himself has softened him a little.

I’m not sure how the voting will turn out by morning but I feel she has already won no matter what happens. She loves the other contestants dearly and will be so happy no matter who takes home the prize. Her performance was the most beautiful I have ever seen or heard.

Evie had big support last night. Amos’s mom was there along with all of these crazy kids who flagged down Howie for a picture. He was running from the crowds until he realized they were Evie’s family and friends.

What a Wonderful World was Amos’s song and she sang it as a tribute to him. She said in an interview that he was out there on that stage with her and I believe he was.

Evie will be singing a special song tonight with a guest celebrity so tune in again for the 2 hour Wednesday finale.

My gratitute tonight is to my Heavenly Father and His Son who is the true Light of the World. Evie Clair is only reflecting that source. A mother couldn’t ask for more from her children.

Gearing Up for Finals



Tomorrow is the big day and today was a day of preparation.

First we were taken to Universal Studios for live news interviews right next to the Harry Potter ride. My sister messsaged me from Texas to tell me Evelyn was on her local news.

We had all kinds of other preparations today including a meeting about what Evie would want to do for the Vegas show should she win. That would take place on a Friday and Saturday the first weekend of November. So the winner doesn’t necessarily need to be a “Vegas act” as some argue because there are really only 2 shows.

Evie doesn’t expect to win and is not a front runner but the timing of this in connection with Amos’s passing has been so peculiar to me.

Evie is making great friends on set and is loving her time here. She misses her siblings and is so excited that they will be here tomorrow.

Now for voting. There is an app you can download to vote 10 times. There is nbc.com that is also connected to Facebook and you can vote 10 times per email address there. You can also vote 10 times per phone with the number they provide for Evie Clair during the show.

Her song tomorrow is very special to her dad and I can hardly wait for you all to hear it and see her beautiful set.

Thank you all for encouraging me to keep writing the blog. I’ll probably end this one but start another one.

I miss Amos so much and think about him almost every minute. I find myself praying that I will dream about him. Last night I started a dream that he was in but quickly woke up. I felt like Christopher Reeves in the movie “Somewhere in Time” as I  tried desperately to fall back to sleep so that same dream would continue. 

This photo was from the day Evie first appeared on America’s Got Talent and Amos watched from a hotel near the hospital while recovering from a surgery.   I never would have believed at that moment how things would play out. I’m sure there is a purpose and until we understand all we can do is hang on and find joy in the journey.

Sleepless Night

Last night was both incredible and horrific. The home videos they played before  Evelyn’s performance touched me so deeply and carried into my dreams. I was only able to sleep for about an hour last night so I’m surprised I had a dream at all.

After her performance I found a quiet place back stage to tell her that her dad’s organs were failing and that he had been placed on life support. I asked her if she wanted to get home right away or wait until after the results show. Her eyes filled with tears and she seemed confused but she decided to stay.

When we got back to the hotel, the nurse who cared for Amos last night called me to tell me she didn’t believe he would make it through the night. That resulted in uncontrollable anxiety in me that led to a flare up of my own plurasy which makes it  hard for me to breathe. I lay awake most of the night with my heart racing thinking of my sweetheart and all he was going through and the extent of my love for him and the past 20 years we’ve spent together.

I prayed for the dawn to come without another phone call and it finally did.

He was sustained through the night and to me that is a miracle. It helped me to find my hope again that more miracles can come.

His dad told me the life support is holding steady for now but that he was just made aware that a hurricane is heading toward his home in Florida prompting him to get back. Thank you  Dean for everything.

Amos’s mom arrived in the night as did his brother Tom. America’s Got Talent made arrangements to get us home immediately after the live results show tonight rather than tomorrow as planned. We are so thankful to them for their kindness and understanding. Simon isn’t the only one who gets emotional about Evie Clair. Dozens of producers and staff members are going through this challenge with us and we love them for it.

I know I wasn’t the only one who had a sleepless night. My kids at home are struggling and I’m anxious to get back to them.

Today in addition to the life support, they have him on dialysis and are struggling to keep his blood pressure stable.

Hang on best friend.

Hope Number

I’m so proud of this girl. She has so much light to share with the world. She loves her family and her Heavenly Father more than anything and I can’t wait to see how she continues to shine.

They took us to the top of a mountain past Beverly Hills this morning. We were doing some filming for the portion they will show this Tuesday just before her performance.

We arrived before the film crew and had a quiet moment together out of the city to pray together. It was a very special and peaceful time for us after news that Amos had had an excruciating night.

Many doctors feel that upping his pain meds in his condition would be very dangerous. His heart rate is up and he is now requiring oxygen. For this reason, I am flying home for a few days to help him get through these hard days. Many thanks to the good people at America’s Got Talent who arranged that and care so much for us.

The doctors said they couldn’t find a place to decompress the liver. It was very difficult to get the information they were looking for without the scan they needed yesterday. They said trying to use the ultrasound was like comparing apples and oranges. They do show many issues with his liver but see nothing they can do about it. They are going to consult with Dr. Lanauze for ideas.

Amos got some TPN nutrition last night and His billiruben numbers went up to 9.8 from 9.1.

With many people giving up on hope for him, I asked him today what his “hope number” was. He asked me what I meant and I told him it was like the pain number that they are constantly asking him except it was a scale of how much hope he has that he will survive this from 1 to 10. Without another thought, he said “10!” No matter how bad it gets, his hope number is what matters to me.

I can’t explain to you how much I love this partner of mine. Yes, life is harder than it has ever been for either of us right now but we will have each other forever and today is just a small moment in eternity.

 

We’ll Remember Tonight

My blog is late today but this day has been so full that it spilled over to the next day. I agree with the lyrics in Evie’s song “We’ll remember tonight for the rest of our lives.”


Not being with Amos on our anniversary was difficult but it was also about the most special and memorable anniversary I can remember. Evie’s light shined so brightly that the whole world had a glimpse of the love we have in our marriage and our home.

So many people helped us feel loved and comforted today. I didn’t expect Simon Cowell to be one of those people but it was so thoughtful of him to publicly send his love to Amos. We have also felt that genuine love and concern from the entire America’s Got Talent staff   and even other contestants and their families.

Amos fought all day to be awake and ready for the show. Thankfully AGT sent him a link to watch it since the Trump rally in Phoenix and violent after effects superseded America’s Got Talent in Arizona. His oncologist walked into his hospital room tonight just as he was watching Evie so Dr K had a chance to see her too. It isn’t hard to find a link to watch a clip but I suggest watching the whole show on nbc.com. They have an incredible tribute to Amos where they show him at the prison and at church as bishop. It was incredible from start to finish.

Amos is really struggling today despite his will to enjoy the show. The things he is enduring are unimaginable. They are considering a procedure that would permanently numb parts of his digestive tract so he could live with less pain medication.

Some good news…the ostomy specialist came and found that the blood in the ostomy was from a leaky blood vessel near the opening and not a perforation in the bowel.

Margine Saves the Day

Evie and I said our goodbyes to Amos this morning before jumping on a plane. We will miss him but know he is in good hands.

My girls were supposed to dress up as animals this morning for spirit week and I thought Phoebe did a cute job helping them pull it off.

The true hero of the day besides Phoebe was Amos’s nurse Margine from Aegis. They are the best home care company ever. We went to change Amos’s Fentanyl patch yesterday and realized there weren’t any left.

I tried Amos’s oncologist’s nurse who never responded. Then I tried the oncologist directly who said he couldn’t call in a refill on a controlled substance.

Margine said it would be difficult but didn’t give up. She had to go through lots of red tape to make it happen so fast but had them delivered to our home before the end of the day.

Phoebe was so relieved and Amos is doing better with new pain patch tonight. He has another appointment with Kundranda tomorrow and I hope they will be able to think outside the box on a new plan for Amos’s treatment.

Evie and I made it to Hollywood today. We ran into Celine Tam, Darci Lynn Farmer, Pompeyo Family Dogs and Yoli Mayor. We are excited to see the first group hit the stage tomorrow and begin preparations for Evie to perform live next Tuesday at the Dolby Theater.

Tonight we went to see Dunkirk (wow) at the historic Mann’s Chinese Theatre. I was sad to see that they have renamed it TCL Chinese Theatre since my maiden name was Mann and I always used to think it belonged to me.

Porter landed the roll of Antony in his high school’s production of Sweeney Todd. I am so excited that he even had the slightest desire to be involved in a musical. Congratulations Porter.

Thank you to whoever brought dinner to my family tonight. Also many thanks to Sean and Rebecca who had room at their home for Bree and Tanner this weekend. Love having friends with spare rooms.

Upswing

Amos said to me tonight that he is sensing an upswing. We did notice that he had more energy. Getting worse wasn’t an option so the only way was up. It really helps to be able to drain his stomach at home.

He actually wanted to get dressed this afternoon and as he came down the stairs for the first time in a couple days, he realized his brother, Tom, from Washington was sitting on the couch. Tom loves surprises and thought he would come into town early to see his brother. 

It was a good thing he came early because I had to run Evie to Gilbert and Amos needed to start his TPN before I got back. Dean and Tom worked together to figure out all the complicated steps with the help of FaceTime and Nurse Margene.

Evie was a hit tonight as the guest speaker/performer for a young women mutual night in Gilbert.

She told them about her experiences on AGT and answered questions. She made them cry with some really special songs then made them laugh with her Miranda Sings impression.

Thanks Phoebe and Michelle Owens Rigby for setting up such a fun night.

The timing was perfect because NBC aired a special “Road to the Finals” edition of America’s Got Talent Tonight so all the girls got to watch Evie on TV while they were with her.

If you missed this episode, catch it on NBC.com tomorrow. It had lots of footage we hadn’t seen and was really well done.

Dean and Connie were super stars today. Cleaning, cooking, shopping, caring for Amos, spending time with my kids, installing lighting and finding ways to make things more efficient. What a blessing they are.

We all plan to keep the upswing going and get Amos through this rough patch.

Low Visibility

Coming home from the hospital, we hit a huge dust storm that turned into a huge wind and rain storm. We found out there was another fatal accident near our home and we heard this one had four fatalities. This monsoon season has turned all the grass really green but has taken too many lives.  Grandma, Amos and I were coming back from the cancer center while Porter and grandpa were coming back from the store. We all experienced low visibility and had to slow way down or pull over. We got home just as they did and enjoyed a wonderful evening together.

We saw the oncologist today and got some good planning done. Grandma was worried but had it out with the doctor and feels much better. After Amos gets fluid draining catheters placed in his stomach and lungs, then regains some strength through TPN feeding over the next couple weeks, they will start him on chemo pills.

Our home health nurse got us an incredible new hospital bed and a wheelchair. They were delivered today. I just know they are going to make life better for my sweet Amos.

One of our wonderful missionaries is getting transferred tomorrow so he came to say goodbye tonight. We will miss him.

We are so excited to have a friend in the ward who works at GoDaddy and is going to help supercharge Evie’s website behind the scenes.  You are the coolest friend ever Ezra.

We also had a visit from the entire Stake Presidency tonight. Love those good men.

With all the stuff going on today plus rehearsals and getting ready for an AZTV7 spot for Evie tomorrow and her CVX Live trip, we got to watch most of the acts on America’s Got Talent tonight. We were super impressed with a few of them and are excited to meet some really talented people in a couple weeks.

The storm was crazy and the visibility through it was terrible, much like the visibility through our storms right now, but we know our way home by heart and we are making our way back there together even if we have to slow way down or pull over.

A True Light in His Darkest Days

I had to leave the hospital for a couple hours today and Amos’s good friend Tyler showed up just in time to care for him while I was gone.

I sent Tyler a message to thank him and this was his response…

“Grateful for the opportunity to spend time with him! He is a True S.T.U.D. (Spiritually Tuned Up Disciple). He is a good friend and a great example to me!”

I love this picture for the adorable smiles on both of their faces.

Amos had a really difficult day. The doctors crushed our hopes early this morning. I asked if the fluid build up could be a sign that the cancer was dying since I was told that by the ER doctor. He said it was actually a sign that the cancer was growing.

The oncologist later said that his malnutrition has made his cancer untreatable right now and that we need to consider a feeding tube if the fluid draining they did today doesn’t help him start eating better. They then told me that the fluid in both the lungs and stomach would probably return but that the draining would give him some temporary relief. They are checking for colitis.

He wasn’t allowed to eat all day because of a biopsy he had from 2 to 4. Now he is resting after watching America’s Got Talent with Evie. That was the best part of his day and has been a true light in his darkest days. It was a great show tonight. Just ask Macy Gray. If you missed it, our Miss Evie Clair made it through to the Live Show at the Dolby Theater next month.

Thank you Christy for taking such good care of my kids. Love you sister.

Thank you John P. for your prayers and kind words of encouragement tonight. Oh ya, and for discovering Evie Clair.

You’re Here for a Reason

Let’s start with reporting on some problems we are solving around here!

  • The sleeping problem was solved with a little thing called the Wedge Pillow. This cool pillow wedges up against the back of the bed and keeps him in an upright position. I’m so excited that it works for him and he won’t have to sleep in an uncomfortable chair anymore.
  •  The work problem is being solved by something called Intermittent FMLA which is job protection for eligible employees who occasionally need time off for dr. appointments, physical therapy or disease flare ups.  This will give Amos 48 unpaid days of work that he can use whenever he needs without losing his insurance or his job. I think this is the right answer for us. We have looked into both federal and state assistance programs but none of them seem to quite fit our needs. Being able to stay employed and keep his insurance but not feel obligated to work is amazing.
  • The yard work problem was solved by my amazing kids who spent one of their last days of summer mowing and sweeping and hosing and picking up trash in the yard. This also solved the “I’m bored” problem today.

Evelyn has been so helpful and generous this week. When we first moved into this house we had a leak in our ceiling that caused some water damage. The home warranty covered the repair but not the damage so I dried it out and covered it with a temporary foam until I had money to fix it. Our sweet Evelyn made some money from an upcoming performance and asked if she could donate a portion of it to get the ceiling fixed.

David Fuller at Four Sons Construction did excellent work. I love having a professional construction guy so close.

Evie also took a huge load off me by doing all the back to school shopping. She got online and looked up all her siblings school supply lists, shopped for the best deals then put everything in my Amazon cart for me. I thought all the attention she is getting would cause her to begin to focus on herself too much but it seems to have done the opposite. I’m so grateful for her strength right now and understanding our situation so well. Porter is another story, but he is starting to get that the world doesn’t revolve around his car or his next date.

My wonderful, helpful, beautiful Visiting Teachers came today. They brought me a book called You’re Here for a Reason by Nancy Tillman. I read it to my kids and Evelyn read it to Amos as he was trying to relax after work. He loved it so I wanted to share it with all the people I love….all of you.

You’re here for a reason, you certainly are.   The world would would be different without you, by far.   If not for your hands and your eyes and your feet, the world, like a puzzle, would be incomplete.  

Even the smallest of things that you do, blossom and multiply far beyond you.  A kindness, for instance, may triple for days… or set things in motion in different ways.

It travels much further than you’ll ever know.. under the tree tops… over the snow…til it’s wandered…  and fluttered… and floated… and twirled — making things happen all over the world.

You’re here for a reason.  It’s totally true.  You’re part of a world that is counting on you.   So don’t be too worried if some days fall flat.   Good things can happen even from that.  

Life can be tricky, there isn’t a doubt.  You’ll skin your knees trying to figure it out.   But life works together, the good and the bad, the silly and awful, and happy and sad, to paint a big picture we can’t always see… a picture that needs you, most definitely.  

Remember that next time a day goes all wrong…to somebody else, you will always be strong.   And that ball that you lose or that kite you let go could make someone’s day — you just never know!  

You’re here for a reason.  If you think you’re not, I would just say that perhaps you forgot — a piece of the world that is precious and dear would surely be missing if you weren’t here.   If not for your smile and your laugh and your heart, this place we call home would be minus a part.   

Thank goodness you’re here!   Thank goodness times two!  I just can’t imagine a world without you.

All I can say is that our lives would definitely not have been complete without tasting the best ribs in the world tonight. Sister John is a talented cook for sure! Amos was like “Wow, did you make this food?” I wanted so badly to take credit for it. He could only eat a few bites but they were the best bites of the day. Thank you Shea.

As most of you know, Evie Clair will be appearing on this Tuesday’s episode of America’s Got Talent. We have a picture to share from the holding room of Evie with the best friends she made during the Judge Cut round. Meet a family band called Pelican212. They are amazing people who had a great effect on her life. These kids are so talented and inspiring and just fun to be around. She hopes she will get to see them again.

AMERICA’S GOT TALENT — “Judges Cuts” — Pictured: — (Photo by: Ron Batzdorff/NBC)