Help Me to Believe

A new worry has plagued my mind. Well, not just one... I am also worried about GBM in the spine (once again, too much googling) but there is just one that I seriously need to address. My boys.
They are smart. They know what is going on. They understand that their dad is sick and that he has a tumor. They know that he goes to Salt Lake for medicine. They also know that sometimes people die.  Ever since Josh had his first seizure (yes, he has had another since my last post) the boys keep making comments and asking questions about if their dad is dying or going to die.
How do you answer that? I have told them that he is going to be okay, but I know that isn't good enough because all three of them keep commenting. For example:

• Kimball was emotional tonight. He was worried that his dad would keep having seizures and that he would die before we could go on vacation. He said, "He is our very first dad, and we don't want another dad." 
• On the day Josh had his second seizure (last Tuesday) McKay asked, "Is Dad going to die because Heavenly Father needs him like he needed Josh Graham?" (Josh Graham was a friend, our bishop, and my boss. We all loved Josh and miss him)
• Friday after I drove Josh to work, Benson must have forgotten that we had taken Daddy to work because he was looking for him and said, "Where's Dad? Did he die?"

The truth is Josh and I both have decided that we must accept whatever the Lord's will and understand that in doing so, we will be able to find the peace and strength we need to be able to endure. Josh is better than me. I just want answers. I don't like feeling like things are up in the air. However, I KNOW that I have felt the quiet peace that comes from knowing the Lord is in charge and no matter the outcome everything will be alright.
As adults, with a life of experiences, we still struggle to understand that this life is given to us, and that we need to be okay with just letting go. So, how do you explain that to little boys? They are smart, yes. They have felt the Spirit. I know they have. I have been privileged to witness their sweet experiences. But they are still little boys. I wish that I could protect them from the harsh reality that we are facing. There are no concrete answers that we can give them. No absolutes in one direction or the other. Just that we are doing everything we can, but that ultimately it is up to Heavenly Father. Ultimately, Heavenly Father knows how their dad can best help these boys grow into righteous, stalwart, honorable men (which is something we pray for daily). Heavenly Father can work mighty miracles. He can see the big picture, and we are given so little and must extend our faith. It seems like such a hard lesson, a burden really, that doesn't seem fair to place on little boys.
So tonight, I am contemplating the best way to be honest and fair but to somehow protect them.  We have plans to discuss it for Family Home Evening. I guess I have about 16-17 hours to figure out what the Lord would have me teach them.
When I was in seminary, I had an awesome teacher. Brother Kunz wrote lots of songs and used them in his lesson plans. The songs he wrote all had stories behind them. The one going through my head tonight was about a family who had a son injured in a terrible car accident. To the best of my memory (which may not be so great, given that it is nearly 2 am), the lyrics go something like this:

Help Me to Believe

As I kneel beside his bed, I think about the blessing on his head.

They were the words my Father gave to me. Help me to believe.

I know he hears and answers prayers, when we call him he is always there.

He promised miracles would never cease. Help me to believe.

And help me to put my trust in Thee. Hear my plea, please comfort me.

And help me see-- Miracles never cease. Help me to believe.

As I see him sitting there, I know his life is in our Father's care.

In his eyes I see his faith is complete. Help me to believe.

If I knelt at Jesus feet, He could heal my son so easily.

But I know his power works through me. Help me to believe.

And help me to put my trust in Thee. Hear my plea, please comfort me.

And help me see-- Miracles never cease. Help me to believe.

SIDENOTE: Hmm... I can't remember the rest. I tried to google it to see if I could find the lyrics. (I am getting really good at googling these days.) I just found out that he is teaching at BYU-Idaho. That's awesome. It sounds like his students enjoy his style of teaching as much as I did. One of the quickest ways to invite the spirit is through music, and he did that so often in our seminary classes. Anyway, that song is from his CD, I Believe. 

Tonight, I feel like I am praying and pleading with the Lord to help me put my trust where it belongs: with Him. I am praying for comfort and faith. I am praying for the strength I need to be able to share it with my boys. I want to help them have faith, not fear. I am praying for the enabling power of the atonement to help me do something that I would not be able to do if left to my own means.  

Just so you know what REALLY happened.

Ok, I don't know exactly how I feel about posting right now, but I feel like I need to.
Let's be honest. We live in a small town on the corner of a super busy street. It's no surprise that the word spread like wildfire that we had an ambulance, a paramedic truck and a Uintah County Sheriff at our house on Tuesday morning. It was just before 8am. Just in time for people to be headed to work and dropping their kids off at school. I know that most people are sincerely concerned and we really do appreciate the love and support, so... let's set the record straight.
Josh was getting ready to head out the door to a meeting for work when he said, "Oh no!" and then hit the floor. I barely had time to ask him what was wrong when he was trying to tell me to call 911.
Stupid phone was not on the jack and I panicked looking for it. I actually don't even remember where I found it before I was dialing and rushing back to Josh.
By this time McKay and Benson had clued in to the fact that something was wrong and they followed me into our room where Josh was lying on the floor having a seizure. The woman who answered my 911 call asked me to have someone meet the paramedics at the door. I panicked because I didn't want to leave my husband and I didn't want to send my kids to the door either.
I immediately started calling the most recent calls on my cell phone.
I tried to call my mom. No answer. Must have been driving.
I tried to call my sister. No answer.
I tried Toni. Thank you Toni for answering and rushing out the door.
It's all kind of a blur but it felt like it lasted forever. Josh was conscious the entire time he was seizing and said that it was a scary almost out-of-body experience because he was totally out of control of his body.
I just remember McKay and Benson kneeling at his head asking me if he was dying. I told them that he wasn't, but actually I had a this picture in my mind of the tumor seeping into the channels of his brain and spreading itself further and deeper. I was afraid he was dying too. I wasn't even convinced it was a seizure because it almost looked like a stroke. Only the right side of his body was shaking and the muscles were contracted and pulling at his limbs and face. We said a prayer. McKay was trying not to cry, and he said, "I don't want to say it Mom, you say it." So I did.
Finally the paramedics arrived and at some point Toni and my sister got there. Not sure if it was before or after the paramedics or maybe at the same time. Hmmm... I realize now that I am not sure how my sister knew to come. I had tried her cell but got no answer. Note to self: Must ask Emily how she knew to come.
After somehow farming out my kids and while knowing they were in good hands, and hoping that they (and those taking care of them) would be alright, I went out to follow the ambulance to the hospital. I waited for a minute in the truck and then wondered what was taking them so long. I went to check on Josh. I found them trying to place an IV. Poor Josh. They weren't having very much success and Josh actually got sick and threw up while they were trying to get the IV in this place and that. I guess all the stress from the seizure and everything made him nauseous and it didn't help to have them miss a vein and try for another over and over.
We finally made it to the ER where they decided it would be best to find out from the specialists at the Huntsman Cancer Institute that Josh has been seeing, what they wanted him to do. So after several hours in the ER, he was sent home with anti-seizure medication and we planned to follow up with the specialists.
So on Wednesday, we went to his regular infusion (which is for a study group that he is part of). The nurse practitioner over Neuro-Oncology came to talk to us and said that she thought he would be fine to wait until his next scheduled MRI. We weren't I told her I didn't think it was alright to leave the hospital with no answers. Especially since he had never had a seizure up until that point. She argued that maybe he was over tired. I argued back that he has been plenty tired since he started treatment and it didn't seem likely that just now his body would react by seizing. When Josh said that he would much rather be pro-active, she agreed to schedule an MRI for us. However it wouldn't be until the end of the day and so we would have to make the decision to either stay another night, or to go home. We decided to stay in case we needed to be here Thursday.
Just as we were making the decision, we heard back that we would need to be back on Thursday morning to discuss with members of the tumor board what do do next. His tumor has grown. We don't know yet by how much, since we just got a phone call tonight. I guess tomorrow will be more telling.
Until then, I just keep reminding myself that the image I saw in my mind during his seizure was preparation. Even though the Lord may not answer prayers the way we want them answered, they are always answered in our best interest according to His eternal perspective. We will be ok. Things will be fine. Josh is great and has a really good attitude about it all. Deep inside, I know that now matter what, it will be ok. It's just scary and hard to hear what we heard. Too many things go through my mind. Too many "what ifs" and unknowns are floating around in my head.
In the Book of Mormon it says that murmuring is to disbelieve. I am trying to not murmur. I am trying to be strong like Josh.

A bit of inspiration

Not a lot has gone on as far as Josh's treatment. (Another round of chemo, lots of tired days and getting ready to start another round next week.) But, we have been busy, and I just haven't taken the time to update or upload pictures or anything. So... here's a quickie:

Eliza is 15 weeks old. She's growing fast, and it makes my heart ache.

The boys will be starting preschool, Kindergarten, and first grade. It makes my heart ache.

We went camping over the last week to our traditional spot, Ox Park.  It was a lot of fun, and the best part was that I think the mountain made Josh feel better! He ran with the kids, played ball, shot guns, and went hiking to the "moon rocks." It makes my heart hope!

Then, as I was waiting for some Tylenol to take away this annoying shoulder pain... I jumped onto blogger and found these quotes from Elder Uchtdorf's November 2008 talk on hope. Thanks Aunt Colette for always posting just what I need!

The Lord has given us a reassuring message of hope: “Fear not, little flock.” God will wait with “open arms to receive” those who give away their sins and continue in faith, hope, and charity.

And to all who suffer—to all who feel discouraged, worried, or lonely—I say with love and deep concern for you, never give in.

Never surrender.

Never allow despair to overcome your spirit.

Embrace and rely upon the Hope of Israel, for the love of the Son of God pierces all darkness, softens all sorrow, and gladdens every heart.

Endure it well...

What exactly does that mean anyway?

The scriptures say "...peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes." (D&C 121:7-8)


A small moment? Give me some of that perspective. I understand what we are supposed to do. I understand that our perspective is so much different than the Lord's. I understand that in the grand scheme of things, our lives are a fraction (a small moment). I understand that we are here to learn and grow and to become more like Him. I understand that without trials and opposition, we wouldn't be able to do so.  


So, my question is this: How do you "endure it well?" What qualifies enduring well? Being happy about it? Surely that can't be. Just accepting it and moving on? Is that giving up? That's almost what it feels like. Just living life day to day and praying for the strength? It feels like just barely surviving. It doesn't feel like enduring well. Pray for distractions? Those distractions come to an end, and then it's after mid-night. It's quiet. There's nothing to do, really, but listen to thoughts. Then, replay conversations and actions over and over and wonder what can be done to better endure or to be a better, more humble person. What can be done to endure it well?

Blessing day blessings

Ok, it's been almost a month since Eliza's blessing, but I actually had Mindy (melindasmithphotography.blogspot.com) take pictures of her and the boys a while later because it was just too much to try to do pictures with everything going on that day. So, I am just barely getting around to posting.
Her blessing was on June 27, and we had the support of so much family. Josh's family traveled hours to come and my family went to a lot of work for the day and dinner afterward. I get anxious and a little uptight with so much going on, but I am so grateful to all that everyone did to make it a great day.
Josh blessed Eliza and it was a sweet, tender blessing.  I was so overwhelmed by gratitude for such a precious baby and a strong husband.  Enjoy these oh-so-precious pictures:  (Thanks again Mindy)

The Facts:

We went back to Salt Lake last Wednesday to see Josh's doctors, and for an MRI.

So here's the latest:

• Josh's tumor has shrunk by a little over a centimeter. It was 4.5cm and is now 3.4cm. 
• He finished another cycle of Temodar (chemotherapy)
• He will start another cycle of Temodar in about 21 days from today
• He will continue to receive an infusion every two weeks as part of the study he is participating in. (It is a double blind study, and we aren't sure if he is receiving Avastin or saline)
• He will not have another MRI until September unless there is a need for one. 
• We are fine, just taking one day at a time.
• We are still overwhelmed and completely humbled by all that has been and continues to be done for our family. We continue to pray for blessings to be upon each of you for helping us carry the burden.

The "Rest of the Story"

Thanks to my mom and Colette for reminding me that I need to update with "the rest of the story" about McKay.  Especially since I got myself all worked up, and so many of you were supportive and helpful in your comments. I've got more to blog about Eliza, her blessing and the boys and Josh, but for now... McKay:
I left you wondering what I should do about McKay's situation. It turns out that I didn't have to do anything. McKay took care of it.
His teachers played a game with M&Ms and talked about how each M&M was good, but that they were all different. They gave the students a chance to tell something different about themselves. Their answers were typical for five-year-olds.
However, when it was McKay's turn, he stood up in front of those 20-plus kids (including the ones that had been mean) and told them that he was different because he had two fingers. He showed them his arm and told them that he was born that way, that Heavenly Father sent him to our family because we love him. And then he told them that he can do everything each of them can do. He told them that he was special and that he wanted to be their friend.
Yes, that was my five-year-old little boy. That was my little boy standing in front of the class with poise and confidence and just taking the opportunity to tell it like it is and to make a point that it is NO BIG DEAL.
Disclaimer: I try really hard when I blog to be real. I try to not talk about only the good things or the bad things, but to talk about our life like it really is. I try to not paint myself as someone I am not. As a super-mom, whom I KNOW I will never be. We aren't perfect, we have days that we are lazy and watch more TV than we should. My boys are hilarious, active, sometimes naughty, and often tender hearted and sweet. I try to be a good mom, but I have my moments that I am not proud of; that I wish I could change.
That being said, I am going to take the opportunity to say that I am SO proud of my little boy. I am so proud that he was brave and that he reached out to be their friend, even after some of them had been so cruel. I am thankful, that despite the mistakes I make as a parent, McKay is a good boy. He took the initiative to be the bigger and better person and now he has friends waiting to play with him everyday.