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.

And the wicked mother bear comes out...

What am I going to do? I am so angry and upset in behalf of my sweet McKay that I just have to get it out.


I know this is a baby picture, but you can see his cute hand and his personality is easy to read in that smile!


Because our lives have been so crazy for the last couple of months, and I am not sure what the following weeks/months will entail, I signed up Kimball and McKay for the summer connections program. I figured that it would be a chance for them to do some fun things that I might not be willing to do with a new baby.
Anyway, today was only the third day, but last Thursday McKay said that two boys were being mean to him about his arm. (In case you don't know, he was born with an ulnar club arm and has only two fingers on his left hand.) He said they were calling him pig-arm and crab-kid. They told him that it made him ugly and they didn't want to see it.  He said that he just ignored them but that it made him feel bad. (OF COURSE IT DID!)
For the most part, he doesn't really ever talk about his arm or act like it ever affects him. But, there have been a few incidents. Most recently he was disappointed that Eliza was born with all ten fingers. I guess he was hoping that SOMEONE would be like him.
We have spent so much time telling him how great he is and how special he must be that Heavenly Father sent him with a special arm and that he could still do everything everyone else can do. We've told him how much we love his arm and how much we love him and what a great kid he is.
I told him on Thursday (through gritted teeth and boiling blood) that he should just tell them that even though his arm was different, he was born that way and that he could be their good friend and do everything that they could do. I want him to always be the bigger person and not stoop to the level of someone who simply doesn't understand that people are born with differences. Yet, on the inside I was fuming mad and wanted to let those kids know what I thought about them. I wanted to tell them that they should think about how they would feel if I told them I thought they were ugly and didn't want to look at them because they had brown eyes, freckles, or because they had feet! Something to make the point that it was something McKay couldn't help and that they were out of line!
Whether it is because these kids just haven't been taught or they are just stinkers and brats on their own, I can't help but be furious because we have tried so hard to let him know that he is perfect just the way he is and that there isn't anything he can't do. I was upset about it all weekend and I actually talked to the person in charge and she felt it best to talk to the teachers over his age group and that maybe they could find a way to address the issue sensitively.
So, fast forward to today. Apparently the kids were calling him "two-finger man" today and running and screaming and saying "Get away from him before we have to look at it!" OH MY GOSH! SERIOUSLY?  He tried to talk to them and tell them what I told him to say but they just kept running away from him. So, he said he just decided to ignore him. Then, he said that someone was nice to him. He said that the little girl told him that it looked like another finger was trying to grow and so then he would have three. He felt like that was nice, and I am sure the little girl was trying to be nice. But, I don't want him to feel like he has to have five fingers to have friends or to be able to do the things other kids are doing.  Even Kimball was feeling protective. He said, "When I see the boys with the black hair I will tell them that I am in first grade and you are my brother so they should be nice." It made me feel proud that Kimball wants to stick up for his brother.
What am I going to do about this? I think that I might go and have McKay point them out to me so that I can talk to the kids. I will do my best to be kind and sensitive about it, but I feel like I can't just sit back and let him be made fun of everyday. If I don't stand up for my own son, who will? Am I wrong? Would it make it worse for McKay? He doesn't need people tearing him down when we have worked to build him up!
This is what I feared when he was born. This is what I cried about. This is what I worried and stressed over when he was only a few hours old. I knew it would come. It is inevitable. Kids can be so mean. I remember elementary school and hearing kids make fun of other kids. The teasing only changes and gets worse through middle school, junior high and high school. But, this is what we are facing right now. This is what my poor little McKay has to hear. He is such a great kid and can be a good friend. The little brats are missing out on an opportunity to have a really good, fun buddy.
It makes me realize that when he starts Kindergarten in the fall that I can't just sit back and hope the kids are compassionate. They won't be. I have to take the initiative to say something. Or do I? Does it make it worse? Think about Finding Nemo. I know that is maybe lame, but that is what I keep thinking about. Think about how Marlin tells the kids at school that Nemo has a "lucky fin" and that he was born with it. Nemo is humiliated. Am I going to make it worse by saying something? But I can't sit back and do NOTHING!  Aaaahhhh!

A heavy dose of surreality

Today was Josh's last day of treatment! There will be 28 days of "normal" life until he has to start another cycle of chemo. He will also have an MRI at that point to determine how effective treatment was. Until then though, I am so glad he will be able to rest more and be able to stay home. Although I just asked him what he thought he wanted to do tomorrow and he said that he thinks he will go to work!
Lately I have been feeling like this is all so surreal. It feels like the weirdest thing to realize that we are actually facing this. We are actually living this. This is something that always happens to other people, and it is always so upsetting and worrisome to hear their stories.
When my friend, Josh Graham, got sick I remember feeling the same way, thinking that it didn't seem real. It was SO hard to wrap my head around it. My heart ached for him and for his family. It just didn't seem fair, but I was amazed and inspired by his positive attitude and rock-solid faith.
Now, even though it has been a little over two months since my Josh was diagnosed, I am feeling that same feeling. I can't wrap my head around it. That surreal feeling was so strong at the Relay for Life during the survivor/fighter and caretaker walk. It was actually kind of hard and emotional. I just kept thinking: "I can't believe we are here doing this," and "How did we get here?"  "How is it that so many people just randomly get thrown into this heart-breaking, scary, and yet faith-building/testing reality?" and "How are we among all these strong families and friends?"

This is just after the walk and I was feeling a little overwhelmed by everything. It felt so good to just have Josh put his arms around me and remind me that no matter what, everything would be okay.

Benson didn't want his daddy to go without him. He walked with him all the way around the track with all the other survivors/fighters. What a cute little man. He is such a sweet little boy. 

This was the first time that we have ever participated in the Relay for Life, and even though we didn't participate in everything, I was impressed by how many people support the event and take the opportunity to honor and remember those who have experienced cancer in one way or another.

We have great friends who put a team together in honor of my Josh and in memory or Josh Graham. One of our friends that organized the team, brought luminaries for us to decorate. Because I thought what Kimball put on Josh's was so cute, I decided to take pictures of what we had done to remember them.
The first one is for Josh Graham and I just wrote just a few of the things that we remember and admire about Josh. (Toni, in case you read this, I hope you know how much we all loved your Josh and how I admire your strength. My heart still aches for you, and yet you set such a good example for me.)
The second is for my Josh and Kimball wrote a message for him on the back. The picture is of Josh throwing a ball with Kimball.

Before I put this post to rest, I have to post a picture of my baby. Eliza is one month old! Seriously? It's not fair. I hate that time goes by and they grow out of the newborn stage so quickly.
She actually has a little cold right now, and because she is still so tiny I took her in to the doctor to be sure that it was just a cold and that everything was fine. The doctor reassured me that she is fine, and we just have to wait for the virus to run its course. The fun part of the visit was that I got to have her weighed and found out that she is now 7lbs 11oz!! Way to grow Eliza! Holy smokes! That's a whole pound and two ounces since she was born a month ago.
Here she is just chillin' in the swing. See how her hair still sticks up all over everywhere? Benson says, "She meeds to fix hers hairs!" He is so cute about making sure I know when she needs me. They all love her so much. McKay is always so good to be sure he gives her a love and probably could never hold her enough and Kimball sings to her about how much he loves her and will always protect her.