Raw Reality

Today I was wondering about Barnes & Noble waiting for Jessica. I innocently wandered into the special needs section. Most of the books really didn't relate to Ryan. They were either about ADHD or Autism. But one caught my eye. The Horse Boy: A Memoir of Healing.

Healing. That's what I want for Ryan.

As I quickly scanned it I felt an overwhelming flood of emotions. A longing to make his body whole. To make life easier for him. Perhaps to make life easier for me too.

Their quest for healing took them to Mongolia. Mongolia. What if Mongolia had the answers for Ryan? Could I get him there? Would I take him there?

For a brief moment, this national bestselling book stirred up all the emotions and fears that I keep so locked away. Fearing a complete melt down, I quickly put it all away, crossed my arms in a self-protective hug and reassured myself that it will all be okay.

It will be okay.

Late tonight, Johnathon decided to join in the decorating.
He sure did a great job!

Happy 4th of July!

David decorated the house today for Independence Day.


Didn't he do a great job?

So, cute!

Deborah is really excited to wear her new shoes to church today. You can't see them really well, but they have little butterflies on them. I can't believe how big she's getting. Time is really going by much too fast.

Scout Camp

Jacob just returned home from Scout Camp. He had a great time! He's exhausted but still too excited to rest. :) I thought you all might enjoy some pictures of his adventures. Thanks, to his Scout Master, Mark Slabaugh, for all the pictures. Dwight & I hope you survived the week as well.

The Last Round

This last round of chemo has been a little tougher than others. The nausea and headache came on much earlier than in the past and has not responded well to medicines. The spots that were treated with radiation back in December & January became dark red. That was really odd. Normally, they are hardly noticeable. It was odd to see them respond that way to chemo. On Tuesday afternoon I broke out in dark red patches, which by Wednesday mid-day just looked like one solid patch.

The good news though is that this is the last Chemo! Hopefully, within a few days the trend will start moving upwards and life can become a new normal.

But for today, I'm going to rest and enjoy the beautiful rain!

Yokes

You know the scripture in Matthew 11:28-30:

Come unto me, all ye that labour and are heavy laden,
and I will give you rest.
Take my yoke upon you, and learn of me;
for I am meek and lowly in heart:
and ye shall find rest unto your souls.
For my yoke is easy, and my burden is light.

I have been thinking a lot about these scripture versus for a few days and want to share some of my thoughts with you.

Let's set up the scenario.

Just before this scripture, we read that Jesus had been "commanding" his 12 disciples and then left to go preach in their cities. He is approached by 2 of the disciples of John the Baptist who ask if he is The one that was prophesied to come. Jesus told them to go back and tell John of the blind receiving their sight, the lame walking, the lepers be cleansed, and many other miracles. When they departed, Jesus talks to the multitudes about John. He tells them that "This is he [meaning John] of whom it is written, Behold, I send my messenger before thy face, which shall prepare thy way before thee." After he speaks to them about John the Baptist, he chastises the cities where the forementioned miracles took place for not repenting. Then he counsels us with the great counsel found in chapter 11 versus 28-30.

"Come unto me, all ye that labour and are heavy laden,"

Here's the command: "Come unto me. "

This command or plea seems to be repeated throughout the scriptures:
"Come follow me. "
"Follow me."
"Come unto me."

If you think of the times in which He lived, he walked, and walked ... and walked. He frequently encouraged those who were interested to follow him. Why? Quite literally so they could walk and talk. They couldn't text or Facebook after meeting. So, if they followed him ... walked with him ... they could talk. And, as they talked, they could learn of Him, see His works, and go where He would go. (Wouldn't it be cool to be able to go for a literal walk with Jesus?)

This command or plea still applies to us. "Come unto me." He is pleading that we trust in Him and follow Him. In the beginning, this may be just leaving room in one's heart to believe in a Savior. Hoping. As time progresses, it may be seen as simple desires of our hearts to do the right thing at the right time. Exercising faith ... even if our faith be the size of a mustard seed. As we progress in our faith, coming unto Him will include changing and repenting, allowing Him a permanent place in our Hearts, and enjoying the walk with Him.

Then he says who the command is directed: "all that labour and are heavy laden."

Isn't that all of us? Don't we all struggle to carry our loads? Thankfully, the loads aren't always super heavy, but we all labour and have heavy loads at times.

Then comes my favorite part, the promise: "and I will give you rest."

I am confident there is not a soul on earth that could not benefit from this promised rest.

Next he gives us the directions on HOW we can come unto Him and receive the much needed and desired rest: "Take my yoke upon you, and learn of me; for I am meek and lowly in heart;"

At first, this instruction seems like a two-step process. It is, but it is also related. We learn of him as we take His yoke upon us.

Well, to really talk about this part we must know what a yoke is. When I was young, the word yoke always sounded like to me to be something heavy, which is one definition of the word: servitude or bondage. (Merriam-Webster follows the servitude or bondage listing with "especially: Marriage." That made me laugh!) Yet, another meaning of the word is "a wooden bar or frame by which two draft animals (such as oxen) are joined at the heads or necks for working together; an arched device formerly laid on the neck of a defeated person; a frame fitted to a person's shoulders to carry a load in two equal portions."

You can see an example of a yoke in the picture below.


One of my heroes, Neal Maxwell termed it "the atoning yoke." He explained how Jesus willingly "took upon Himself the heavy, atoning yoke in order to redeem all mankind by paying the agonizing price for our sins.... Jesus also volunteered to take upon Himself additional agony in order that He might experience and thus know certain things according to the flesh, namely human sicknesses and infirmities and human griefs, including those not associated with sin. Therefore, as a result of His great Atonement, Jesus was filled with unique empathy and with perfect mercy."

Then Maxwell continues by explaining how taking His yoke helps us to learn of Him. He says:

"So the taking of Jesus' yoke upon us constitutes serious discipleship. There is no greater calling, no greater challenge, and no greater source of joy -- both proximate joy and ultimate joy -- than that which is found in the process of discipleship. The process brings its own joys and reassurances...."

And, then here's the real key:

"Shouldering the yoke of discipleship greatly enhances both our adoration and knowledge of Jesus, because then we experience, firsthand, through our parallel but smaller-scaled experiences, a small but instructive portion of what the Savior experienced. In this precious process, the more we do what Jesus did -- allow our wills to be swallowed up in the will of the Father -- the more we learn of Jesus. This emulation directly enhances our adoration of Jesus. Simultaneously, in this same process, the more we become like Jesus, the more we come to know Him."

So in serving others, in sharing His load, we learn more of Him, and thus become more like Him. Perhaps this is a 2nd step in his counsel. The first step being, "Come unto me." The second being, "Take my yoke upon you."

Each of the counsels/commands/pleas are followed with the promise of rest: "And ye shall find rest unto your souls."

Have you ever had a day when you just wanted everything to stop so that you could rest? I have. I have had days when the fight seemed a little too hard, not because I wasn't willing, but because I was tired. I longed for REST. If only, I had really understood this principle then.

He promises, if we will take His yoke, we will find rest unto our souls.

I have experienced that great rest. While I am I nowhere near perfect in following this command, I testify that this is a true principle. During the times when I have felt like things were really hard, what gave me the most peace was service to others. I don't profess to understand how taking the time and energy to help someone else with their burdens when I already have too much on my own plate helps me, but it does! It really does.

And finally, the reassurance: "For my yoke is easy, and my burden is light."

When we link our efforts to the strength of the Savior, and couple our energies with His, the burden is light. What might be an impossible burden for one to share on their own, will be easy with the Savior's help. I know this to be true. I have had moments of realization of the heavy, heavy burdens I was carrying. In those moments, I realized that because of so many people sharing His yoke, the "burdens" which I have been asked to carry for now have often seemed so light that I did not feel their weight at all.

Tonight as I have thought of this scripture, I imagine an image of many of your faces yoked together with the Savior's carrying my load for me. I am so grateful to each of you. Words are inadequate to express my gratitude and love for my Savior, for each of you, my family and friends, and even those of you who I have never met that have prayed for me and my family. I am thankful to know that we can have rest when we take His yoke and I am thankful for feeling that rest in my life.

LAST CHEMO!

Today was my very last full chemo treatment! (Yes, dear ... "for the foreseeable future.")

Isn't that great! It went well. Since they gave me Benadryl, I could barely keep my eyes open for most of the time. I love the port, but have I shown you a picture of the needle? Why do I look at it every time??? Silly me.

Anyway. It is done and now I'm off to bed. I'm a little nauseous and my head is hurting, but nothing too horrible. Thanks for everyone's support and prayers!

Tonight our family was sitting around the family room talking. Dwight was sitting on the floor with his long legs straight out and Ryan was lying in between his legs near his feet. When Dwight started talking, I noticed that Ryan would get just a little bit fussy. So, one time when Ryan was fussing, I said to him, "Ryan if you want to be with Daddy, then ROLL to him." He laid there quietly for about 1-2 seconds and then I saw just a slight movement with his left leg and hip. He was trying to roll like the therapist has taught him! Then when that didn't work, he curled up and tried to roll to the other side. It didn't really work either. But, I wanted to acknowledge his attempts and his understanding of my words. So, I went over and helped him with some gentle prompts so that he could roll to Daddy. Once he made it up to Daddy, Dwight picked him up and said, "Oh, Ryan, I'm so glad you came to see me!" Then he held him on his lap. Ryan had the sweetest smile and then sat there with such a look of contentment.

Isn't it great that he understood my words? I'm SOOOO thankful!

Texas Parent to Parent Conference

Dwight and I attended a Parent to Parent Conference on Friday and Saturday. It was interesting. Some of the classes were better than other classes. Unfortunately, some of the speakers were not aware of who their audiences would be. Some thought they were speaking to parents only, when the majority of their classes were professionals, and vice versa.

Unfortunately, we ended up not feeling comfortable using the childcare available at the conference ... a story for another day. The conference is intended to help bring parents of special needs kids together and to learn from one another. I really was very focused on attending the sessions and checking on Ryan & Dwight. So, I didn't meet a lot of people.

I did meet a great couple though. They have a young daughter that they adopted when their 4 kids were all older. They shared some of the things that worked for their daughter. It sounds like Ryan and her share a lot of similar qualities. And, you know what? She walks. She started when she was about 4 1/2. Isn't that wonderful! Oh, the things we have to look forward to!

Michelle

I've often said to people who are new to our church congregation that I wish I had time to tell them all the wonderful things I know about the other ladies in our congregation, of their service, of their accomplishments, of their talents. It would take weeks, I'm sure. I feel the same about all of my friends. I wish I could tell you of each of my friend's talents, service, and accomplishments.

Today though I want to tell you about my friend, Michelle. Michelle is one of my favorite people. Michelle holds a very dear place in my heart.


I remember the first time I met her. I sat next to her at church and she has a LONG last name. When she first said it, I thought, "I'll never be able to say that or remember it." Then she broke it down into 3 syllables. It was easy and I've never had a problems with it since. I also discovered that day that she and I had a few things in common. One of which is that we both enjoy teaching our children at home, at least most days we enjoy it. :)

If I were asked to describe her I would probably whisper to you that she has ballroom dance skills, and a Master's Degree in education. Those are the things that might take you a while to learn ... like they did me. I would then also tell you that she is: an amazing mother, a strong woman, and a faithful daughter of God. She is also funny, loving, gentle, compassionate, giving, devoted, hard working, brave, adventurous, fit, beautiful, humble, trustworthy, non-judgmental, gracious, easy to laugh with, easy to cry with. She is my friend.

She is also my friend who came over with clippers, a razor and shaving cream to help me make the transition from long hair to very little hair. This was such a blessing to me. I asked Michelle for several reasons. One was because she had asked what she could do to help me. Another was because I knew she had experience shaving her husband's head. But, the main reason I asked her was because I knew it would be okay if I did break down and cry. You probably remember that I thought I was going to be okay with the process of losing my hair, but I wasn't entirely sure. I knew that if Michelle was there with me it would be just fine.

And, it was. She was so gentle and encouraging. We laughed a lot and had a conversation that I'm confident I would not have had with any other person. :)

Michelle, my dear friend, please always remember how much I appreciate and love you! No matter where you move or how long you are gone, you will always have a place in my heart and in my home. Thank you for being my friend! Oh, and happy birthday!!

Neurologist Update

Ryan and I went to see Dr. Seals today. He was wonderful as usual!

We discussed the effects of the change in medications. We're still seeing several seizures a day. So, he upped Ryan's medicines again. He is now taking Trileptal and Lamictal. Hopefully, the combination will work.

I also asked if Ryan might grow out of the seizures, as I've heard some children have done. He said that some children do, but it depends on the cause of the seizures. The bottom line is there is not much of a chance of Ryan out growing them. However, we are blessed that he is responsive to medicine. There is a chance that if with medicine we can get him to the point where is having no seizures that his brain may decide that it's supposed to behave that way. If that happens, we may be able to back off some of the medicine without him starting to seize. (I hope I explained that right.)

He was encouraged with Ryan's vocals and especially enjoyed Ryan's smile.

Oh, and since we had discussed my cancer at the last appointment, today I gave him my good news. (I stated it as being in "remission" so that I wouldn't stress yet another doctor with the terminology of "cancer free.") I loved that he celebrated with me the joy of being in remission. I could see it in his eyes and his staff's eyes that they were truly happy for me and glad to hear the news. Isn't that wonderful? Sometimes people think of doctors as money-hungry, greedy people. I'm sure there are some out there like that, but my experience has been very opposite of that. They are kind, self-sacrificing people. Can you imagine the years of sacrifice that not only the doctor put into becoming a doctor, but also his family? We have been blessed with a team of good-hearted, wise, knowledgeable doctors. What a blessing!

Discouragement

This morning I did the normal Sunday morning rush to get the children ready for church. Yet it seemed that no one was ready on time and no one seemed to be concerned that we were running behind. We finally managed to have everyone ready but Ryan (and me). I was feeling so overwhelmed and frustrated that I just sent them all out the door to church with Grandma Mann and even thought about just staying home. But, as I put dinner in the crockpot, I realized that I was allowing myself to feel discouraged. I started to wonder why.

Why would I feel discouraged now? After all, the cancer is in remission. Ryan is not having as many seizures. We don't have as many doctors appointments. I am very blessed. Why would I feel discouraged?

As I thought about it, I realized that for the past few months of intense times, I have focused on the things of most value and allowed other things to fall to the back of the list. I have focused on family, scriptures, prayers, faith, gratitude, etc. Now that the intense times have lightened, I have started to worry about the nit-picky stuff with the house, and my weight, etc. Not to say that those things aren't important, but they are NOT the most important things.

Just realizing it took the power away from those things to discourage me. I am still concerned about getting this extra weight off me. It doesn't feel good to be out of shape and I am more out of shape than I have ever been in my life. I'll be 42 soon and I want to be fit and forty, not fat and forty. So, I'll work on it, but not before I do the other things and not with more effort than I'll give the more important things.

So, I return to the approach of "Let us CHEERFULLY do all things that lie in our power" with a renewed zeal and the knowledge that "we may then stand still, with the utmost assurance, to see the salvation of God, and for His arm to be revealed."

I *know* without a doubt that God will bless and has blessed our lives. I look forward to sharing more of those great blessings with each of you.

Jacob's Job

Jacob decided early this year that he wanted to take $100 to spend at Scout camp. If you know Jacob, you can probably guess that he is anticipating spending the full $100 on junk food & sodas. Since camp is only 6 days, you can also probably imagine Jacob on about $16 per day of junk food & sodas. Oh, my!

Obviously, we are not going to give him $100 or allow him to foolish spend $100 from his savings account. Our response was the typical, "Get a job." So, he did. Every time he met a neighbor or friend, he would tell them that he was looking for opportunities to earn money. He would tell them that he could pull weeds, or mow lawns, etc.

Thankfully, he had more work than he had time to do.

I have to admit that as Mom, I was a little nervous about turning Jacob loose with a lawn mower or a weed eater. I could easily visualize a one-handed Jacob going to scout camp guzzling soda and somehow managing to eat candy by 2 handfuls at a time even with just one hand. :)

So, I took him to his first job, and was relieved when he came home tired from hard work and with all his limbs still attached. Later that same day I took him to his 2nd job, where I watched him mow and trim a lawn like a pro. Amazing! Why am I paying a landscaper when I have Jacob???

"I'm going to be fine."

As we walking out to the pool yesterday, Deborah kept saying to me, "I'm going to be fine." She repeated this exact phrase to many at least 6 different times. I really didn't know why she was saying it. But, then again, she's 3. I don't know why she says a lot of things.

After we entered the water she said to me, "I'm going to go under water and I'm going to be fine." So, she did. And, she was fine.

Imagine ... at 3 years of age, she is not only setting (and accomplishing) her goals, she also understands the power of positive self talk.

So, I have a goal that I've been working on, and probably need to do a lot more positive self talk to accomplish. Starting right now, I'm going to assure myself that "I'm going to be fine." And, I'm going to accomplish my goal.

How about you?

What if?

Do you have someone in your life who just knows exactly how to "push your buttons?" Someone who makes you a little crazy? I do.

But, last night I had a thought. We've all heard the saying "What would Jesus do?" Great saying. But, what if you learned that the person who makes you the most crazy was the best friend to Jesus? Would it change the way you treat the person?

What if?

Ryan's mic-Key Button

We changed out Ryan's mic-Key button again today. (I'll spare you of me singing the song, yet again.) It's the exact same, just a new one. It took all of about 10 minutes. In fact, our appointment was at 2 pm and I was in my car pulling out of the hospital at 2.02 pm. I wish all appointments were like that. :)

The scriptures tell us to liken them unto ourselves, right? Well, today as I was driving, I realized here's how the beginning of Doctrine and Covenants 123:17 is likened to me:

"Let us CHEERFULLY do all things (including driving) even while on Prednisone!"

Man, I am one impatient driver on Prednisone. Today I was driving up a very heavily congested street and was just unwilling to let anyone pull out on to the street. Normally, I let a car out of the parking lot. Not today. In fact, one lady was very aggressively trying to cut me off... I won.

I hope it wasn't any of my friends. Even if it was maybe they didn't recognize me since I was driving a rental SUV. :) Whew.

The Good Effect of Prednisone

I hate Prednisone. You may remember that from previous posts. I think the saddest picture ever taken of me was taken just after finding out chemotherapy would involve Prednisone. However, I have found a side effect that I like. (Forgive me if this seems inappropriate to share with the world.) So... drum roll, please ... it gives me bigger boobs!

Whewhoo! ... or is that a Whoop, Whoop!

(Too bad it's a very temporary side effect.)

Change of Plans: Chemo is back.

The good news didn't change. The biopsy report still showed "no residual disease." Whewhoo! However, after reconsidering, the Doctor presented two options to me today when I went for a consultation before the schedule "maintenance treatments." We could continue with the plan of moving immediately to the "maintenance treatments" of once every six weeks for the next 2 years, or we could do the more conservative, safer route of 2 more aggressive chemotherapy treatments.

Obviously, what I want is to have to do nothing. What I want is to be a Mom and a Sweetheart with the time and energy to show my family how important each of them. What I want is to never feel sick to my stomach again. What I want is to ... well, it's not making me feel better to list the things I want but don't have right now.

So, I'll tell you the story instead.... during the past weeks, on a couple of occasions I have heard the quiet whisperings of "You really need to finish out the chemotherapy." But, I didn't want to do it and it wasn't what the doctor recommended. So, I ignored. (Geez, as I typed that just now, I thought, "You'd think I would have learned. Heavenly Father told me to that an aggressive treatment would be effective, but we spent 2 months treating it with the less aggressive method cause I didn't push to be more aggressive. I really need to listen and act.) Anyway, so when he brought up the 2 options, I immediately knew that what I needed to do was to finish what we started and then go to the maintenance option. So, that's what we're doing.

When I told my sweetheart, Dwight, about the doctor recommending 2 more doses of chemo, he said, "I felt impressed that you were quitting too soon." He is so kind to allow me to get my own answers, but I really appreciate when he shares his feelings and impressions with me. He helps to reinforce my confidence that what I'm feeling is really coming from Heavenly Father and not just from me. Do you ever need that second witness?

Anyway ... thank heavens for a doctor who is willing to be humble enough to continuously be learning. Thank heavens for the technology that allows doctors to share all their findings and to learn from one another. Thank heavens for the angelic staff that takes such good care of me while I'm there. And, thank the heavens a few times for a port that allows me to get stuck only once instead of 3 or 4 times!

The treatments went well today. I'm feeling a little weird right now. I will say that I was a bit disappointed to know that I'd have these side effects 2 more times. Yet, I know it is the right decision. I'm so thankful that I know I have a Heavenly Father who loves me and cares so much about every detail of my life!

Oh, and I'm thankful for the good friends who helped today: My mother-in-law has been such a sweetheart to be here with the children and such a joy to talk with. My friend (and Ryan's friend) who played with him and loved him ... and even likes me! My friends who brought over a really, really delicious dinner, chicken & dumplings. Yummy! Ya'll know how to cook!

And, now I'm off to bed to try and get some sleep. Ryan is having his mic-KEY button (m-i-c-k-e-y m-o-u-s-e ... can you read that without thinking of that song?) ... sorry ... he's having it replaced tomorrow. I'll let you know how it goes.

Keep those prayers coming, kay?